7 Year-old with Digestive problems....could It Be Celiac or Chron's?

Updated on April 14, 2015
S.L. asks from American Fork, UT
52 answers

I am the parent of 3. My oldest, a 7-year-old girl, has had gastrointestinal problems for about 3 years. Lots of pain varying in severity, and hard for her to describe. She always pointed to different locations. It happened most days, with a few little breaks, but mostly she had just chronic pain. Also, I journaled things but could never find a food or food group that caused the problem. After a year of this off-and-on pain, I knew things weren't normal. She went to an allergist, and tested negative for the major food allergies. (he suggested I keep celiac in the back of my mind) She went to a pediatric GI who said she probably had a "functional" bowel disorder, such as IBS. He suggested I journal the pain, etc. (he also suggested celiac could be a possibility) We did take his advice and journal her diet and the pain, we tried eating for ibs, but nothing helped. She was still in pain. And worst of all, she was afraid to eat, and not eating well, so she was really not gaining, and looked sick and malnourished. I was getting desperate, feeling that the dr.'s couldn't help.

This roller-coaster went on for about 2 more years. Then, about a month and a half ago, she was in severe pain for several days, and wouldn't eat at all because it hurt to eat. I had never seen her in this much pain....she was crying and just laying there. Even walking hurt. And.. she needed to eat more than just the broth I could force down her!!! I took her to the e/r thinking maybe it was her appendix. After ultrasound (couldn't find the appendix) they decided it may have ruptured, and they'd better do surgery. The surgeon did a laproscopy and found that the appendix was fine, but they removed it anyway. Then, he decided to look further with the scope, esp. considering her history. In her small intestine, right at the duodenum, (where the stomache drains into the bowel) there was severe damage and inflammation. Also, a little further down, there was another site of inflammation, but not as large or severe. He decided to do a bowel re-section and remove the damaged part at the base of the stomache. When he was talking to us later, the surgeon said that he thought it looked like other patients he's worked with who have Crohn's disease. He thought that perhaps the inflammation was causing blockage, and that coupled with the general "raw-ness" of the site, this may have been why she was in pain. But, he said it would be very rare to see this kind of damage in someone this young. Because he's not a pediatric g/i, he referred us back to our pediatrician. He did want us to follow up with him, once a specialist had read the pathologist's report and done further examination. We are now waiting to get into our pediatric g/i. Our pediatrician has been supportive, but readily admits he doesn't know enough to help our particular case. I asked if we should test her for celiac disease (which affects the small intestine) and Chron's disease. He thought celiac was unlikely....and perhaps testing would be a waste of time.

The good news is that my daughter did feel better after the surgery, and ate more than she has for quite a while. The bad news is, that for the last week or so, the pain has come back.....

I thank you if you actually took time to read this.... I guess I'm just wondering if anyone out there has had a child with similar symptoms, or if you've had a child diagnosed with Celiac or Chron's. I really just want answers, and while we do see a great specialist next month, I still want to be as informed as possible before I go in. My gut instinct, as a mom, is to just have them test for everything. But, I know tests aren't always reliable. So....if anyone has any informed advice, I would love to hear any that you have for me. I'm at a total impasse. and, I love my daughter. I have prayed to have strength and wisdom. I know God answers our prayers, sometimes by sending the right people into our path..... I just hope that's what will happen in this situation. If she's never going to get better, I just want to know so we can help her live life to its fullest! If she can get better, I want to help her do that.

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K.P.

answers from Provo on

My husband has had Crohn's disease for 13 years and the symptoms sound very similar. They couldn't diagnose him for the first three years, and finally diagnosed him during an emergency surgery to remove part of his small intestine. Since then he has had another brother get diagnosed with Crohn's and the rest of his family seem to suffer with irritable bowel syndrome, although it's not full-blown Crohn's yet. Diet, stress, and adequate rest are very, very, very important. Doctor's won't tell you much about diet, so you have to do a lot of research, keeping records, and trial and error yourselves.

With my husband, and the same has proven true with this brother (so these could be family things, but I believe they are all major irritants to anybody with as sensitive stomach and digestive tract), here's what's worked for them as far as diet goes...

Purified water: we've found that tap water makes my husband sick, no matter where it's from. We invested in a very high-quality water filter, and it's made a huge difference. It's important to drink a lot of good water to be healthy.

No caffeine: one little sip of Coke even and it causes pain. When he's very sick, even the caffeine in chocolate will irritate him. Caffeine is in some medications (Excedrin, for example, so be careful there).

No soda: even if it's caffeine-free, soda is hard on the stomach and will upset my husband.

Limited dairy: it's different for everyone, but my husband can't tolerate milk. He drinks soy milk (we think Soy Silk brand tastes the best). However, he can have cheese and other dairy products in moderation.

NO MSG: When you're reading for this on ingredient labels, its full name is monosodium glutimate. This is the number #1 irritant for my husband, and we've met several people with sensitive stomachs of some kind, and this is a trigger for pain for them as well. Monosodium glutimate is an additive that's primary purpose is to enhance flavor. However, it does this by overstimulating the glands in your mouth to overreact so the flavor tastes bigger than it really is. The problem is these glands are also throughout your body and so it can make your body overreact in sensitive areas and flare up. It's a terrible additive and is not healthy for anyone. It's primarily in things like broths (instead of using bouillion or canned broths--all of which contain MSG, we use bases--"Better than Bouillion" is a great brand, comes in all flavors, and tastes much better than bouillion anyway), gravies (make from scratch and you'll be okay), flavored potato chips (plain chips and Sun Chips are usually okay), ramen noodles (the flavoring packet is the culprit), salad dressings (especially most creamy dressings, we use LiteHouse brand, it's in the produce section), cheap chinese food (even if they say there's no MSG, it will make him sick), bacon, sausage, nearly all canned soups (except for Campbell's Healthy Request line), etc. The good news is you can usually find brands of all these things without MSG, you just have to carefully read labels. Be careful with eating out. Most restaurants, even nice ones, think they don't use MSG because they don't add it when they cook, but they don't realize it's already in some of their prepared foods--especially gravies, sauces or marinades, and salad dressings. Eating out in general usually makes my husband sick because it's just too hard to determine if those foods really have irritants in them.

Take care with preservatives: through trial and error we've found that some preservatives irritate my husband--primarily potassium sorbate and sorbic acid (not to be confused with ascorbic acid, which is vitamin C). Basically anything that ends in a "sorbate" irrites him. There might be others that do irritate him, but these are the ones we've pinpointed. Foods that contain these are soft flour tortillas and many yogurts, sour creams, and other dairy products. Again, these can easily be avoided and you can find other brands of the same item without this preservative.

Red meat: now, this doesn't always upset him. We do eat red meat. But we eat it in moderation and according to how sick he is at the time. Chicken usually doesn't upset him.

Artificial sugars: Another lady already explained this in great detail. We've never tried eliminating some fruits as she's suggested, but know that most fruits and especially fruit juices can upset my husband when he's very sick. Gum is a major culprit for irritating him, though. For some reason he can tolerate the "Orbitz" brand of gum, but I'd be careful!

Vegetables are okay!: Sometimes the only thing the doctors will tell you is to avoid ruffage, such as very fibrous vegetables and foods; however, and it may be different for everyone, we've found that vegetables don't upset my husband. If you're worried about it, I would just make sure they're well cooked. Some vegetables like broccoli are gas-producing, so that may hurt an already injured digestive tract. Anyway, just use your common sense here.

Take care with sugar: we've found that it's just too hard to completely eliminate sugar in my husband's diet. Remember that stress is a HUGE trigger for flare-ups. And it was just too stressful for my husband to give up sugar completely. I'm sure he'd be much better off if he did, but he'd rather handle sugar on his own terms and have the control over it. So he eats sugar in moderation. Sometimes when he feels himself getting sick, he'll self-discipline himself to cutting majorly back on sugar or completely eliminating it for several days to a few weeks. It does help the less sugar he eats.

Probiotics are great: It would be good for your daughter to supplement with a probiotic, such as asidopholus or lactobaccillus (I don't know if I'm spelling these right!). Anyway, these are the friendly bacteria that promote a healthy flora in your digestive tract. Make sure you are using a high quality brand. We like Culturelle (can be found in most pharmacies, Wal-Mart, etc.) Your doctor might be able to recommend some too. If you're only going to do one supplement, a probiotic would be the one to do.

A word of caution with "natural remedies." I think there is a lot to be gained and learned from using or researching natural remedies, but it can be VERY, VERY confusing, expensive, and extremely stressful when doing so because they all have 10,000 reasons why theirs is the only remedy that works, yet each remedy or natural treatment plan seems to completely contradict each other. We have personally spent thousands of dollars trying various methods. We probably learned one or two things from each method that in the end really helped and could be implemented realistically in our lives. I wouldn't discourage you from exploring the alternative route, but I will tell you to use your common sense and your gut intuition when you consider if you want to try these things. Your daughter, young as she is, has to be willing to try these things too, or they will just cause her more stress and that equals more pain in the end. All the do's and don'ts that I mentioned above that we do may seem overwhelming at first to you, but the nice thing is, for most of them, you can eat many of the same things, you just have to buy a different brand, so in the end the resulting diet doesn't feel too extreme for the sick person. People with Crohn's or other digestive disorders are usually underweight anyway, and some of these extreme natural diets only cause them to lose more weight, energy, and strength. So again, use your common sense!

It would also be wise for your daughter to eliminate as much stress in her life as possible. You need to stay positive for her and she needs to not feel forced or pressured into anything in life. Very ill people tend to get quite depressed too, so perhaps some professional counseling might help her get a better hold of her stress and anxiety and outlook on life. The more positive she is, the less sick she will be...because, again, stress is a MAJOR culprit for digestive disorders.

Good luck! Digestive problems are incredibly frustrating, but they can be helped. Hang in there!

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M.E.

answers from Salt Lake City on

I would test for everything. That's never a waste of time because it will give you peace of mind. I know from personal experience that wheat and gluten are a huge problem with celiac. I would advice to at least stay away from that. It's easier than you think. There is a store in Taylorsville called Against the grain. So great and helpful. But, you can get brown rice flour and make anything and buy wheat free foods even at the regular store. Also, I would 100% recommend you to Dr. Matthew Burnett. Look up www.utahnaturalmedicine.com He may have the answers you are looking for. Best of luck and keep looking for answers. Don't dimiss Dr. Burnett as just another type of doc that will tell me the same stuff, he will be a source of great information to you.

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J.H.

answers from Salt Lake City on

This is a very tough thing to go through. There are people in my family with cystic fibrosis and chron's. I have a son with the same problem he is now 15. He has had digestive problems since he was a baby. Here are some things you can do for your daughter that might help her feel better. Yogurt & Cranberry Juice. The yogurt has enzymes in it to help with food digestion. My son always eats some yogurt right before he takes any vitamins or medication, he doesn't get upset stomachs as much. Cranberry Juice, helps keep your body clean and regular and helps with digestion. My son drinks cranberry juice a few times a day as needed, he doesn't spend as much time in the bathroom anymore. Also if you buy organic fruits and vegetables this may also help. Herbal tea is also something else that might help. I found also that my son has a reaction to gluten so I look for gluten free products. Diet is the best way to help your daughter. Be observant an watch for things that may upset her more than others and adjust her diet accordingly. Good Luck

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L.N.

answers from Denver on

Hi S.,

My heart goes out to you and your daughter. I wish you the best in figuring out what's going on.

I can't believe your doctors keep suggesting celiac sprue(an autoimmune disease caused by gluten intolerance), but not testing for it. It seems that if they can't write a prescription, they don't want to know about it. My husband and several of his family members have celiac sprue, all have different symptoms. I have a gluten intolerant gene also, but have never had symptoms. We had our sons gene tested at birth and they also have the gene for celiac disease. So they have never had gluten. They are also casein intolerant.

There is a simple cheek swab from ENTEROLAB.COM ($150)you can do to see if your daughter is genetically predisposed to celiac or gluten intolerance. They also offer stool tests for gluten, eggs, soy, yeast, & milk which test for auto-immune responses rather than allergic reactions. (For example, I test negative for wheat allergy "prick tests", but have a gluten intolerance gene.) Check out their website. They specialize in intestinal issues. You can also just call and talk to someone there. They are a wealth of information.

In the meantime I would start your daughter on a gluten free (GF)diet TODAY. If it is celiac or chron's, this is the best way to get her feeling better. If not, you are not hurting anything. There are a wide variety of great GF foods in health food stores and in regular grocery stores these days. There are also amazing GF blogs out there with advice and recipes. you can just google GF blogs.

We have been GF for 5 years, so feel free to contact me directly if you have further questions. [email protected]____.com

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T.T.

answers from Denver on

Well, I have suffered from IBS since the age of probably 9 or 10. I wasn't diagnosed until I was in college, tho, because I was embarrassed of my symptoms. But I can tell you that it's not IBS. I would definitely test for Celiac, especially since her joints were hurting. Celiac can affect things like that, whereas inflammatory bowel disorders usually don't. Go with your instinct and have her tested for whatever you thing is necessary. You're her mom and know her best and want the best for her so don't let doctors push you into doing something or talk you out of doing something. Do whatever you can for her. I wish you luck! I can tell you how horrible it was for me as a kid having stomach pain and problems a lot of the time. I can't imagine what your daughter might be going thru. I hope you can find a solution. :)

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C.S.

answers from Denver on

Hi S.,

I am so sorry your little one has to go through all this! I don't have any advice, informed or otherwise, just wanted you to know I will keep you all in my prayers. I hope whatever is causing the problem, gets resolved soon. Good luck and God Bless!

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W.H.

answers from Fort Collins on

I don't know anyone personally, but I have worked in Health Food Stores for over 10 years now. Look for the book Patient Heal Thyself...not sure of the name of the author, but he is a doctor that was diagnosed with Chron's and formulated a fantastic line of products that might help nurish and replenish your daughter from the inside out. His products are called Garden of Life...A lot of modern medicine treat symptoms..which can be good and bad..we have to have faith in the human body and look within. Listen to your doctors, but at the same time these products might help to restore some balance in her digestive tract. In the past years I have seen these products help many people...I'm not saying this will be the answer to your prayer, but It may help your daughter. I wish you the best and you and your family are in my prayers.
Good Luck W. Howard

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R.F.

answers from Fort Collins on

Iam so sorry that your little girl is in so much pain.
I don't have the personal experience with this, but some friends of ours (he has Crohns) told us about a website that has a diet for people with these diseases. Apparently the diet is extremely crucial in preventing/ regulating symptoms. There's also a book (by the lady who started the website), and apparently it's important to read the book rather than relying just on the website. The address is http://www.breakingtheviciouscycle.info (I think the scdiet website someone else mentions is from the same people) and the book is Breaking the Vicious Cycle by Elaine Gotschall (sp?). I pray God will lead you to a solution, whatever it may be.

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J.S.

answers from Salt Lake City on

I don't know specifics about GI diseases (other than the ones I've got :) - which wouldn't apply) but I am kind of a junky for medical mystery shows. There is one thing I've learned from watching these shows and that is not to ever give up until someone can give you a definitive diagnosis. If your specialists are able to rule out the more common diseases - or even if they cannot definitively tell you it is one of the more common diseases - keeping asking to see another specialist, ask them to discuss it with their partners, search the internet, perhaps even see a geneticist. There are many conditions that are so rare, only a few doctors come across them in their entire careers. Don't give up until someone can tell you what's going on.

Good luck & God bless...

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S.B.

answers from Boise on

If your gut instinct tells you to have her tested like crazy, GO WITH YOUR INSTINCT - go ahead and have her tested like crazy! Even if they say that something isn't likely, like the pediatrician saying celiac isn't likely, have her tested anyway. The sooner you can get the problem diagnosed, the sooner you can work on a solution. My heart goes out to you and to your daughter, and I hope everything works out for you!

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E.B.

answers from Colorado Springs on

Sorry you and your daughter have to go through all this. We have been in much the same boat.

My daughter has been tested twice for Celiac (and it's an easy blood test) but it's been negative. She has had many many GI problems (impacted bowel, intestinal biopsies, testing for Hirshsprung's disease, allergy testing, you name it...).

She has Secondary mega-colon, she's had ulcers, an atrophied intestine, and numerous other things.

I'm wondering, does your daughter drink apple juice or eat a lot of applesauce, drink fruit juices, or does she chew gum or eat candy that is sugarless? When we finally found a GI doctor who could help, she told us that the sorbitol (naturally occuring in apples and other fruits, and used to sweeten sugarless gum and other sugarless foods) can be a terrible irritant. She said she thought her practice -- and she was at a major children's hosptial -- would decrease by half if her patients cut out sorbitol. Our daughter has an extreme intolerance to sorbitol, to the point where it was destroying her kidneys and intestines and she was in constant pain, and we removed apples, cherries, red grapes (not green), and pears and anything containing them from her diet. All those fruit roll ups and natural kids' drinks are sweetened with pear and apple juice. Most fruit drinks, even ones called Kiwi Strawberry, have pear or apple as their first ingredient. Even now, if our daughter gets a piece of sugarless gum, she'll get a stomachache and suffer from it. It's gotten better, but we are still really careful. Mannitol and Xylitol are similar. We have spent so many hours in grocery stores reading labels! The good news is, those things are easy to cut out. No sugarless gum or sodas, (aspartame, too, can be a terrible irritant to some people), only pure low-acid orange juice or milk, no sugarless or dietetic foods, no fruit roll ups or gummy bear kind of things. We cut out that stuff 100%, and it worked miraculously. We found baby food that was pure pureed peaches, with nothing added, and substituted that for applesauce. We gave her dried apricots and banana chips instead of fruit roll ups or snacks. We're about the only people in the store looking for stuff sweetened with old-fashioned sugar, full fat and nothing low calorie.

My daughter had an endoscopy last year and it showed a lot of inflammation, due to a tiny hiatal hernia. She had a barium swallow test done and a visual motion floroscopy. They showed inflammation and rawness, too. She takes Prilosec (prescription) which has helped, and uses Zantac (over the counter) when she's hurting. She also went through a year of "food rehab" to learn to eat again, at Memorial Hospital. She was only eating about 4 foods and she's really skinny. That program helped immensely.

We just went through Infectious Disease and Rheumatology specialists. I hope your specialist will help. What kind are you seeing? We've seen about every kind of specialist there is. Right now she's being treated for Post-Viral Fatigue Syndrome, on top of all her other stuff.

Please get in touch with me if you want. You're not alone! I know it's frustrating, but God does not forsake us!

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Y.L.

answers from Grand Junction on

I would definitely check out the alternatives. It sounds like your daughter's chemistry in her system is out of balance. It is not right to have those digestive problems so young. She is still growing and the body has a tremendous ability to heal itself if it is give the correct things. Who knows what heavy metals she inherited or developed through our environment. Check out this website for info on hair analisis and other therapies.
www.wellhavengj.com. You can also call Y. Lange, ###-###-####

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J.S.

answers from Denver on

Hi Shelly --

My sister went through the same kind of thing and was finally diagnosed with Crohn's disease. She wanted to go a more natural way to make herself better (doctors usually prescribe steroids which end up making you feel worse)....

Go to this website www.scdiet.org. It will be a wonderful resource for you -- the diet has been known to help people with Crohn's Disease, Ulcerative Colitis, IBS and Celiac. My sister was on the diet exclusively for 3 years. She said that it was about 6 months when she finally had no more symptoms whatsoever. Everyone has a relapse after 3 months and she said she did and then it got better and better.

Don't forget to go to the resources area and get the book - Breaking the Vicious Cycle.

I send you and your daughter much healing, loving energy --

ps. I think the only way to diagnose Crohn's is a colonoscopy -- you might want to try the diet for a couple of months before you think about putting your daughter through soemthing like that....

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A.J.

answers from Denver on

I can only sympathize with the pain your daughter is in, and commend you for being such an understanding and caring parent. I was diagnosed with ulcerative colitis (intestinal swelling) at the age of 16. It took several years, and tests to finally figure it out.This was a very frustrating time for me and my family, because the doctors kept telling my mother I was maybe faking, trying to get out of going to school, even though I had lost more than 15lbs in a 2 month period. This may also be something else to look for, it is an milder form of chron's disease, but also hereditary. Symptoms varied for me, from severe nausea, cramping, loss of appetite, to not being able to eat at all, diarrehia, blood in stool,etc...

I am now a 31 year old mother of 4, and I am still dealing with this, although it has come and gone over the years, I am able to control it with medication as needed..

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K.S.

answers from Denver on

S.,

First, some background on me/my family -- our now 22 month old was diagnosised this pasy December with Celiac. She was always small and after weaning from breast feeding began to fall off her growth curve. Then she really began to get sick all the time and generally "fail to thrive." After several very scary months, we ended up with gastrointestinal specialists at Children's Hospital in Denver and they right away did a blood test for Celiac. This lead to an upper endoscopy and her diagnosis -- within two months. This has been absolutely life changing -- she has grown to the 40% for height (for the 15/20%) but is still thin. She is still a fairly picky eater but her energy level is fantastic. There is a wonderful book by Dana Korn -- Raising Our Celiac Kids, if this is a diagnosis that you eventually get.

To be honest, with her symptoms, I am absolutely shocked that they have not done a blood test on your daughter for Celiac. While this only can help make the decision to an endoscopy easier, this is fairly simple. And why they didn't do a biopsy for Celiac while they were already operating on her I don't either. I would ask for the blood test and talk with the gastrointenstal specialist -- or perhaps find a new one that specializes in children -- to discuss options.

I am not as familiar with the tests for Chron's but I would also demand that. I have heard that on average it takes sometimes up to 6 years for a proper Celiac diagnosis if the doctors don't do it right away and a simple change in diet (eliminating gluten) makes all the difference.

Best of luck.

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S.S.

answers from Denver on

My heart goes out to you! Have you considered trying the gluten free diet to see if she feels better? Sometimes the tests aren't reliable to show celiac, plus you could start now. I tried this diet for my son because he has autism, and it wasn't nearly as hard as I thought it would be. There are so many gluten free substitutes available now, and it's definitely worth a shot to relieve her pain. God will give you wisdom!

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A.P.

answers from Pocatello on

Bless your heart, and your daughter's heart. Insist on testing, period. Ask your doctor, "If this was your 7 year old, what tests would you do?" As far as helping your daughter eat... hear's a strange suggestion. Maybe talk to your doctor about it and do some research on human milk banks. Human milk (breast milk) is available by prescription for Chrons disease patients and other illnesses, too. It's a "whole" source of nutrition, and your daughter might be a perfect candidate. It would be wonderful to find a food source while you wait for testing results. Also while you wait, ask if you can be put on a list to get in to see the specialist if there is a cancellation. Good luck.

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H.C.

answers from Denver on

I am sorry that your daughter is feeling so bad. I have a sister in law, a mother, and an aunt with celiac. When my daughter was small she would not eat she would gag and she has remained tiny. She is now eight and I finally had enough. I figured if she had celiac it needed to be diagnosed and if she didn't we could finally put it out of our minds. So we had her tested, against the doctor's better judgment. It is a simple blood test and then a two week wait. She came back negative for celiac but the peace of mind has been worth every penny of the cost of the test. I think it was only about $100.00. So, I think with how much pain she is in it would be worth testing so you know what direction to head in. It took the doctors 2-3 years to diagnose my sister in law and she was in horrible pain too. Now that she has changed her diet she feels much better but she also has a lot of allergies on top of celiac so she is not just limited to gluten free but no acidic foods and a bunch of other stuff too.

I think my best advice would be, to be your daughters advocate and make sure the doctors are being passionate about finding what could be wrong.

Hope she feels better real soon.

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S.L.

answers from Pueblo on

I will pray that you find an answer to your daughter's problems. I agree with you about having her tested for celiac and chohns. Even if they come back negative as least you know that you did what you could. I would not allow the doctors to treat you like you are some hovering mother.

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K.E.

answers from Boise on

I have a nephew with celiac's and his symptoms were similar along with being anemic. Even though they haven't diagnosed your daughter with celiacs, you could try putting her on the diet (gluten free) and see if it makes a difference. It usually takes a couple of months of adhering to the diet before they begin to notice a difference and straying from it will cause setbacks. Michael was nearly 20 years old when he was diagnosed. That was several years ago--he is grown and married now and does very well. It took awhile for him to catch on that if he cheated on the diet, he paid later. If you put her on the diet and things improve, you can be pretty sure that she does have celiac's. Good luck! It sounds like you have all had a pretty rough time of it.

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E.F.

answers from Denver on

Hi S.,

My 6-year old daughter was diagnosed with Ulcerative Colitis at age 5. She started having symptoms around 2 and it took us that long to get to the right doctor. One of the hardest things was seeing her in so much pain and not knowing the cause.

Ulcerative colitis is similar to Chron's. UC shows is the large intestine whereas Chron's can show anywhere from the mouth to the anus, but particuarly impacts the small intestine.

Once my daugther started treatment she started feeling a lot better. She still has flares ups but not as severe. We also do a lot of holistic treatment.

What pediatric gi are you going to? My daughter sees Dr. Hoffenberg at Children's. There are a few docs in the area that are really good.

I just want you to know that you are not alone. I empathize with how you are feeling. Please email me anytime if you have questions or just want to talk or cry.

Best wishes,

E.
[email protected]____.com

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J.W.

answers from Salt Lake City on

I went through a similar problem with my son when he was younger (he is 15 now)he actually had clostridium difficile from overuse of antibiotics (different symptoms). The point is it took me almost a year to find a doctor that would listen and actually find out what the problem was (instead of just prescribing more antibiotics), and I was a working nurse at the time. Dealing with medical professionals is difficult but remember; this is your child, do not stop until you get answers.

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M.H.

answers from Anchorage on

I have two brothers and one sister that have Chron's disease. As far as I know there are no blood tests etc that can tell you that you have it. They actually do a lower GI scope to see if there are any ulcers or inflamation. It sounds like that is what they did when she was having surgery and that they definitely found signs of the disease. My siblings all go to a specialist in Utah Valley named Kurt Bodily. Once they are diagnosed then they go on immune suppressent drugs to stop the immune system from attacking the digestive system. After that they have to get blood tests quite regularly to make sure that they have enough white blood cells but not too many. My siblings with the disease all lead fairly normal lives, they just have to be careful about what they eat. It may sound weird but healthy foods tend to 'hurt' worse since they are more fibrous and 'scratchier' as they go through the bowels. Hope this helps.

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H.N.

answers from Salt Lake City on

I read your request and it sounds a lot like what my younger sister went through. I had my mom type up a response because I thought it would be more helpful coming straigt from her. Here is her response.

I am very familiar with what you are going through with your daughter. My daughter, now 17, started developing digestive problems when she was about 10 or 11. By the time she was 13 her digestive disorder was so bad that she was unable to attend school regularly and was practically bed-ridden. She had almost constant abdominal pain, in varying degrees and not always in the same spot, with the worst pain coming usually within minutes of eating. Her body was not able to digest food properly and was malnourished, and she began developing many other illnesses as well. She suffered from insomnia, her back and head ached, her knees were so weak and painful that she could hardly walk at times, and her hormones were so imbalanced that she would grow ovarian cysts.

We went to a variety of doctors, from Traditional to Alternative. We found much more help from the Alternative sources, who seemed to be more knowledgeable about peculiar digestive disorders, and who were more open to trying different treatments besides strong prescription drugs and surgery. For about a year and a half, we would spend several days each week going from one kind of doctor or treatment to another, trying to find answers and relief for her.

We had her tested for Celiac and the results came back positive. She also had sensitivities to dairy, so we tried eliminating those things from her diet. We were discouraged because even with this knowledge, and a strict diet, she was still experiencing pain after eating supposedly "safe" foods, and she was still experiencing many of the other problems. We would even have her receive vitamin infusions through an IV at a doctor's office, and undergo colonic treatments by a trained hydrotherapist to help with elimination. They helped, but she still wasn't healthy, and still could eat next to nothing. Her digestive track seemed to be so inflamed in spots that everything hurt. Any relief she got was only temporary.

Finally one of the doctors told us that he didn't understand why she couldn't get better, because everything we were doing and all the digestive aids and supplements she was taking should have been helping more. He told us about a new science in the field of alternative medicine that some of his other "hopeless case" patients had been trying, with incredible results. It was called neuromodulation, and it had a reputation of being very strange but also very effective in helping patients with a variety of ailments like allergies (including food allergies), sensitivities, FibroMyalgia, Irritable Bowel Syndrome and even ADD and ADHD.

I took my daughter to the neuromodulation practicioner and after the first treatment she felt relief before we left his office, and that relief lasted for many hours. Although the treatment seemed very unorthodox even compared to other Alternative medical practices, we were desperate enough to go back for more treatments because my daughter was experiencing more relief than anything else had produced. At that time she was 14 1/2, and had been very ill for about 1 1/2 years. She continued to improve and soon felt good enough to go to school each day and stay there all day, which she hadn't been able to do for a long time. With continued treatments over the following weeks and months my daughter regained the ability to eat almost everything, including wheat, other grains, and dairy. Her other ailments also basically disappeared.

My daughter is now 17 and in high school. She occasionally has to go back to her neuromodulation doctor for a "tune-up" because her digestive system still sometimes balks at all the junky, processed food that is so prevalent in the American diet, but she attends school regularly and leads a pretty typical teen-age life. Neuromodulation gave my daughter her life back, and I can't recommend it enough. I won't try to explain how it works, but she is living proof that it does. The procedure is safe, painless, non-invasive, and simple. A child could undergo treatments without anxiety or fear.

Since it is an Alternative medical treatment and is not American Medical Association approved, insurance won't cover it. Also, a Neuromodulation doctor is not allowed by law to diagnose or make any claims about curing diseases. He/she should also never try to have you quit going to your regular doctor, because Neuromodulation works with other types of treatment. It is a relatively new field, and many traditional doctors may not know of it or will tend to be suspicious of it since it is not AMA approved. Don't let that stop you from trying it. This is NOT quackery. It really worked for my daughter. Good luck and God bless. Sandra H

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C.B.

answers from Fort Collins on

I know it has to be so hard watching your child go through this. I have a little girl (4 months old) and cried yesterday when she got her first vaccine. God has placed such a deep care for her within me and crazy to think that it doesn't even measure up to how much more He cares for her. I know it's hard when you don't have answers. I was diagnosed with Crohn's disease after 3 years of testing and diets. Recently, I have found a book called Breaking the Vicious Cycle and am currently doing the diet. I have heard nothing but positive feedback on this. It may be worth checking out. Keep clinging to Him.
Blessings!

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K.R.

answers from Denver on

Hi there -

I was diagnosed with Ulcerative Colitis 12 years ago. UC is grouped with Crohn's under IBD (Inflammatory Bowel Disease), which should not be confused with IBS. IBDs are much more serious, chronic conditions.

I think the most important thing you can do is get your daughter in in to see a GI doctor as soon as possible. If your daughter has Crohn's there are a lot of different treatment options to make her happier and healthier.

I was diagnosed in my late-twenties, so I can't begin to imagine what it would be like to have one of these diseases as a child. I do know that it is important to educate yourself as much as possible so that you can support her if she does. A good place to start would be with The Crohn's and Colitis Foundation of America (CCFA). Just Google CCFA or go to ccfa.org. They are a highly-respected organization and a great resource for information. They have a lot of specific information for kids with these diseases.

If it is not Crohn's, please do check for celiac. I know many people with this disease who rebounded almost immediately upon changing their diets.

Good luck...my thoughts are with you and your daughter.

Kris

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H.R.

answers from Colorado Springs on

I do not know anything about celiac or chron's disease, so the only thing about this that I can say is to research on the internet. There are many web sites out there that can break it down for you and even give you questions to ask the doctor when you see him.

When my niece was a baby, she had an allergic reaction to rice cereal that made her constipated all the time and she never gained any weight at all until they discovered the problem. To this day she is still smaller than anyone else her age.

My daughter woke up one morning with severe stomach pain. We thought it must have been her appendix and took her to see her doctor right away. She has had chronic constipation her whole life, and it had backed up into her stomach and that is what caused the pain. They cleaned her out with some medications and she is doing better now, as long as she stays on a laxitive. I dont know if this is a problem your daughter has had as well, but it is worth asking if that can be part of the problem.

I hope you find the answers that you are looking for, and I hope she feels better!

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P.G.

answers from Denver on

My husbands mother had Chrons, and what the doctor saw and did sounds like what his mother went thru. I would diffinatly have her tested for Chrons. I wish you the best.

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A.T.

answers from Medford on

Shelly,

My son has started with some similar issues. I am wondering how your daughter is doing and what you have gone through since 2008?

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M.B.

answers from Pueblo on

IF you think that it might be celiac then get a blood test done to test for that. You have to have the GLUTEN in her system for the blood test to find it.
My husband thinks that he might have celiac so he just stopped eating ALL itemes that had any GlUTEN instead of doing the blood test. He has done this for two weeks and his stomach problems are going away. You may have to go to a health food store to find items for her.
Read about GLUTEN allergies because it causes more trouble for children. GLUTEN allergies will be life long and a rethinging on what you can eat. Good luck.

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T.P.

answers from Denver on

Hello S., I don't know if you would be interested in this, but I know a great medical intuitive named Barbara Noonan. I have done some training with her and even bought my husband a gift consultation with her for father's day last year. You can find out more about her at instituteofmedicalintuition.com. She would be able to give you insight into what is going on for your daughter. Blessings ~T.

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C.O.

answers from Grand Junction on

Check out some alternative healers. Perhaps a medical intuitive. No processed foods might help. Also, eat only organic. Read about the man who wrote "The Makers Diet." He suffered from this condition and created supplements to heal this. The products are under the name GARDEN OF LIFE. I feel for you and pray this information helps your daughter.

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V.S.

answers from Missoula on

Celiac generally doesn't give you the sort of lesions you are describing. Crohn's does sound possible. It is a difficult diagnosis in kids and your daughter's story is not terribly uncommon. What you need is the pathologist's report, maybe some blood tests, and a peds gi who is comfortable with this sort of problem. I don't know where you live but, if there is no one in your town that you feel good with, most university medical centers will have sort of specialist you need. Good luck.

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J.R.

answers from Denver on

My 8 year old had stomach cramps and diarrhea for months. We took him off milk - that didn't help. We took him off the soy that replaced the milk. We took him off wheat - the difference was miraculous.

So we took him to the doctor for testing to see if it was Celiac. The doctor tested him for Celiac, Crohn's, a whole bunch of other stomach and intestinal conditions, as well as food allergies.

All the major tests came back negative, but he IS allergic to wheat and milk! His wheat allergy is severe and he can't tolerate even small amounts.

Here's the thing with allergies. You can be "intolerant" to something and have it not show up on a test (skin or blood). For example, I do not eat any lamb or pork because when I do the reaction is like food posioning. When I went to the doctor these "intolerances" did not show up on any test.

So have your doctor do as many tests as possible to get answers!

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L.B.

answers from Denver on

Try the "gluten free Casein free" GFCF diet. It has literally been a god send. Her color is back, her skin is back to normal, she has gained weight, the meltdown have lessoned, her cognitive skills have gone for a leap, energy level normal bruising went away and I feel like I got my kid back.

Bless you and your babe

-L

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K.P.

answers from Salt Lake City on

I haven't had a lot of experience with either of those illnesses but I just wanted to give you a little advice and encouragement.

Mother's intuition is usually correct. If your instinct tells you to get your daughter tested for everything then do it. Chances are something else is wrong and the right specialist will be able to get the problem solved for you.

It hurts so bad to watch your child suffer when there is nothing you can do about it, I know. My son has a genetic defect called Ectodermal Dysplasia. I effects hair, teeth, nails, skin, sweat glands, and tear ducts. as well as a ton of other things. He doesn't sweat and so he gets these horrible fevers that won't go away and are potentially life threatening. He once had one that was 108.6. Anyway, I just wanted you to know that there are others out there who know what you're going through. I'll keep you in my prayers and remember to follow that instinct. There's a reason mother's were given it and it is usually correct.

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K.P.

answers from Denver on

Hi S.; wow, what a story and what a difficult time for you and your family and your 7 year old! Well, I am sorry to hear that your daughter had surgery, on the otherhand, I am glad she felt better. I definately suggest you do the testing for Chron's and Celiac disease. Dr. Steve and NatureMed in Boulder does this evaluation for children and can help get you started. he can also help with treatment once a diagnosis is made. check out the website: www.naturemedclinic.com best of luck to you and your 7 year old! K. p.

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C.W.

answers from Denver on

Hi S., I am a 26 year old mother with a 4 year old son and one on the way. I am also a third year pharmacy student at the university of colorado. We have learned quite a bit about Crohn's disease and it sounds to me like it is very possible that is what your daughter has. It is extremely painful and we had a patient come and talk to us who is now in her 30's but started having symptoms of Crohn's as early as she can remember which she said was about 5. It is an inflammatory condition where your body basically attacks its own cells. There are good treatments out for it now a days. As someone mentioned steroids are an option but are usually used chronically as low doses or just for exacerbations. Some of the new biological medications are also being used and have put people into complete remission. Unfortunaetly it is a disease that cannot be "cured" but can be managed. You are on the right track by seing a specialist and I would not recommend all these "natural" diets and supplements many people have recommended. This is a serious disease and needs to be treated with proven medications by a physician because they can help your daughter. If it ends up not being Crohn's celiac is a possibilty and I have actually been through that myself. I was having GI problems not long ago, cramping, diarrhea, severe pain, etc. The GI doctor did a blood test in which a marker, tissue transglutaminase was high indicating possible celiac, but to definitively diagnose it a small bowel biopsy (of the duodenum) must be done and since I got pregnant right before my biopsy I have to wait until after I have the baby in July. So this may be the next step if Crohn's is ruled out. In that case celiac can be easily managed by cutting out gluten. Just continue to do what you are doing and have checked out by physicians, they will find an answer for you and your daughter will get better, hang in there.

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D.E.

answers from Denver on

Have you heard about the book "The Maker's Diet". It is not a diet, but an eating plan and information about how the body works and how it digests. The man who wrote it almost died of Chron's disease when he was in college. They sent him home from the hospital to die. He is now a very healthy adult who is a natrapathic doctor and has created some supplements that feed the digestive tract. The company is called Garden Of Life. You can buy the supplements online, or at health-food stores. They make a product called Primal defense that is for gut health, and they now make it in a kid's version. My children have food allergies, and they are all different and all have different symptoms when exposed. My eldest gets migraines, my middle gets upper respiratory infections, and my youngest gets rashes. The only way to truly find out if they are allergic to foods is to start with a very limited diet and add one thing at a time back to their diet for 3-7 days before moving on to the next item. -God is faithful.

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C.L.

answers from Salt Lake City on

Have her tested for celiac. The initial part is just a blood test. Celiac can be fatal.

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S.S.

answers from Salt Lake City on

I am so sorry about your daughter. There is so much great advice on here that I am going to look into some for my daughter who has had similar but not nearly as serious symptoms. I agree with people that have said to look into alternative methods of healing her. Some of the herbs, special diets (no wheat) really work and could save you so much pain, time and money from the medical profession. You will know what is best for her. Trust your gut and God to get to the bottom of it.

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P.L.

answers from Denver on

My daughter began having similar problems at age 11, mirroring the pain that you describe, with no real origin for any of that pain. Lab work indicated that she had had mono or was recovering from mono - but we had just moved back to the states from England where she had tested negatively for mono. Pain in varying joints, many, many doctor visits, a plausible diagnosis of Reflex Sympathetic Dystrophy - many treatments including IV gamma globulin, a bout in a wheelchair when the pain was intense, and many ER visits later, my daughter's bowel perforated while on vacation in FLorida. Surgery in the middle of the night confirmed Crohns at the age of 16 - 5 years from the beginning of the misery. No one wanted to believe this diagnosis in one so young. She is 25 now, on treatment for Crohns, and has two beautiful children. Not sure if your path will be the same, but keep on seeking until you find the right path, and learn the danger symptoms of the most plausible diagnoses so you will recognize if she crosses in to the dangerous zone - as my daughter did. Good luck with your specialist, and do not give up. Just because the diagnosis is challenging doesn't mean that it won't come. Hopefully it will come easier than the diagnosis of our daughter, at 2 a.m. far away from home!

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Y.R.

answers from Provo on

I haven't ever dealt with this, but in my personal research I've done for overall better health, I have come across the Body Ecology website http://www.bodyecology.com/ and I've read stories of adults with Chron's disease or celiac who have started drinking kefir (whether it's made with cow's milk, goat milk or young coconut milk) and that has helped them.

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N.C.

answers from Denver on

Sry no advice, but my prayers are with you. Yesterday my 9 month started have a lot of blood and clots in his poo. I'm being told to sit and wait it out and have an appt. far in the future with a pediatric GI Specialist. This is nerve wracking!

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B.T.

answers from Fort Collins on

Hi S.,
It is so hard to watch our children suffer. You will want to keep in mind that you are her greatest advocate. Having suffered from IBS myself since childhood, I have some idea of the issues involved here. I've also learned that there is no "one thing" that heals problems like this. The best advice I can give is to approach this problem from many angles: insist on some basic testing; try a GF diet; read The Maker's Diet and implement some of his suggestions for improving digestive tract health (probiotics, enzymes, bone broths, etc.); help her deal with stresses in her life; consider the emotional component that contributes to digestive problems (this can be HUGE). Does your daughter freely express her feelings? What was going on in her life when this started? You may want to talk with her about these things and let her know that it is safe for her to talk about her feelings.
Sending you both love and best wishes,

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G.M.

answers from Denver on

S....don't ever give up...the body can heal itself...i have a couple videos i would like for you to watch to understand this. My husband had 3 feet of his bowel removed in Jun 06 and I wish we had known this before he began to have problems years ago. He would not have had the surgery. Get back to me immedeately. Read our story by going to www.areyoubalanced.net...put mcdowell in the search window...email me immediately. [email protected]____.com Wishing you the best, G.

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K.B.

answers from Fort Collins on

Has she been tested for food sensitivities? The doctor draws blood and the test will determine if your daughter is highly sensitive to certain foods. Then you can eliminate them from her diet and see if she stops having the pains. It might be worth finding out.

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D.P.

answers from Provo on

I was diagnosed with Chron's as an adult but it went undiagnosed for about ten years. I have heard of young children having this problem. It could be any number of auto immune disorders or celiac.

The place you described her having the problem in her intestinal tract is in a similar spot as the people that I know personally that have this disease. If it is a autoimmune disorder even if it is not Chron's it seems like they could put her on a low dose of a steroid or anti-inflammatory to slow or stop further damage while you are trying to figure this out.

Entocort and sulfasalazine have worked great for me. If her problems are seeming to escalate I would not wait for a month to have her seen. I would call the doctor's office and explain that her symptoms are worsening again and last time this pattern ended in surgery.

Most Dr's offices keep room enough in their schedule or acute cases and she can probably be seen sooner. My brother has Chron's as well, while he was in Philedelpia going to college and had an acute attact before he knew what his problem was and he got an appointment set up for a month out.

As his symptoms continued to worsen I encouraged him to call and they saw him almost immediately. Unfortunately it was not soon enough to stave off a horrible infection that nearly killed him due to several perforations that was only remedied by two surgeries and a long rehabilitation.

Consider seeing another GI doctor in the interim while waiting for the pediatric specialist. Chron's can go down hill so fast since she has already had surgery it seems like you should take intervention steps as quickly as possible.

There are a couple of scoping procedures that they can do on her lower and upper digestive tract. They can also take a biopsy of her intestinal tract while they are scoping and there is a test that can be run that can indicate whether or not it is likely Chron's. These are both pretty non invasive compared with surgery and are done outpatient.

The Central Utah Clinic is located in Provo and is the only office of Gastrointestinal Doctor's in Utah county that I know of their number is ###-###-####. I know there are other's in Salt Lake County. A rheumatologist also might be able to help if it is an auto immune disorder that just happens to be manifesting some of the more pronounced symptoms as intestinal problems.

Eliminate stress for her and help her learn to manage her stress and anxiety levels. My symptoms are so much worse when I or my body is stressed from circumstance or sickness. I also take a pro biotic called Digestive Advantage for Chron's and Colitis. You can get it at Rite Aide. These to things seem to help somewhat as well.

Good luck,

D.

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D.S.

answers from Billings on

I don't have any similar issues, but if it were me, I would test for everything. Even if the tests aren't always reliable, you may be able to find out what the problem is. It seems you've tried everything else you can with eating for ibs and journaling.
Good luck to you and I really pray that you find some answers for your little girl!

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K.W.

answers from Denver on

Hi Shelly,

I have 2 boys and my oldest just turned 3 and has Celiac disease. My oldest Patrick was diagnosed this last summer/fall of 07 and would not have been if it wasn't for doing a full 3 panel blood test & endoscope biopsy. Some doctors do not test fully and then a person w/Celiac might get told that they don't have it. Anyhow, I've read your account of how things are going with your daughter & I couldn't help, but think that it sounds real simular to how my Patrick has been. Patrick is 3 and has Celiac & has been gluten free, but still complains of tummy aches and at times does not eat much or is picky about what he'll eat. He has always been dramatic about passing stools or urinating & now my youngest seems that way too. I have a GI (Gastro) appointment for them tomorrow (Fri the 4th April. I like you just want to test both my boys for everything especially cancer (lymphoma) which seems to be hard to detect as it goes w/out symtoms sometimes. I've heard that people that have Celiac are more at risk for Cancer etc... I hate to think anything could be wrong w/either of my babies, but I also hate to miss anything if there is. I love my family more then anything in the world & want to make sure that everything is ok. I am with you on the faith in God & the belief in doing everything we can to understand what is going on. I am so glad that you shared your story and hope that our story might help you as well. I'd be glad to exchange phone numbers with you if you want or if you'd like I have a Gluten free / Celiac group named "The Littleton Celiac/Gluten free people of faith meetup" It can be found on Meetups.com by entering the zip code 80126 and or the name of the group. I really hope to keep in touch & exchange info on our situations if you're willing. Much thanks for your time and we'll keep your family in our prayers.
Kind Regards,
K. W.

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M.P.

answers from Grand Junction on

Oh, you poor mom and that poor little baby. I haven't personally dealt with Crohns with my children, but my nephew has been battling it for the past 2 years.....and thankfully I think they have it under control. I haven't looked where you live....but they ended up taking him to Albuquerque where they have many specialists in GI illnesses. He first started out with severe diarreah...and was taking the MAXIMUM allowed dosage of Immodium - which didn't even TOUCH it. Then he started getting awful aches and cramps in his belly. They thought he may have picked up a parasite somewhere and tested him for that and found nothing. They were at a total loss. The Dr.s were stumped. Then he got sores on his legs that got worse and worse. After months of trying to figure it out, they ended up flying him to New Mexico (The University of N.M.). The Dr. walked in and took one look at him and said I know EXACTLY what you have! They put him on a lot of medication which they had to play around with for awhile to find the right dosages and ended up taking a lot of them away completely. He will have to take the medication for the rest of his life, and really watch what he eats....they told him to eat WHITE foods....bread, potatoes, rice etc. and to stay away from fiber - lettuce, wheat bread, etc. I know O.J. really tears him up. The best thing you can do is to get her into that specialist and let them work their magic.....trust that they know their job and will do everything in their power to help you. It's hard when it's out of your hands and you have to rely on someone to make your baby better - but it will happen. We are blessed to live in a country where we have amazing Dr.s with amazing abilities to help our babies. Good luck to you and good luck to that baby girl.

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B.L.

answers from Grand Junction on

Hello Shelly,
My name is B., I am a 31 year old mother of 2 in Colorado. First of all my heart goes out to you. There is nothing more heartbreaking or frustrating than seeing our little ones suffer, and then medicine does not provide us with answers we need. For a quick background on myself, I have suffered from different health problems over the course of my lifetime, and have watched my babies have a few of their own battles, only to be lead on by doctors who insist on guessing when they did not know the answers, and unfortunately we were at their mercy for quite sometime until I decided to take mine and my families health into my own hands because I have learned that we are our own best advocates for us and our families, and no one wants us to get well as much as we do. Thus began my journey through alternative medicine...which basically means getting well from the inside out....Makes sense doesn't it. I would defintitly rather get to the underlying cause of the problem than to be misdiagnosed and on some pill for the rest of my life to simply treat the symptoms. I have prayed about this for a long time and really feel this is a direction God has put on my heart for a reason and to help all those mommies out there who maybe haven't looked at this side of things yet.

First of all, you need to see what your city water is using as a disinfectant. Recently in water supplies across the country they have began using something called chloramine which is a combo of chlorine and amonia. It has an inflammatory property to it and inflames everything from the inside out. I know this because my children suffered severely. The side effects range from digestive disorders, to lung inflammation, to severe skin rashes and people all across the country are reacting. Go to www.chloramine.org to read up on it.

Secondly, I have done ALOT of reading and self educating. Two books I want to reccommend to you. "Patient Heal Thyself" by Jordin Rubin ND, He is a christian, and He got himself well from severe chrons...and amzing story and he is now helping people all over the world. And 2nd, check out "The Fungus Link, vol 1,2,3" by Doug Kaufmann. Addresses fungal disorders within our bodies being linked to almost all health problems and autoimmune diseases. He too is helping people everywhere and I am currently getting ready to implement his program because I too suffer from chronic inflammation.There is a doctor in Dallas who's daugther suffered from severe bladder infections as a child and the doctors were making her sicker and sicker so she , as a mother, put herself through med school to keep her family well...she has done amazing things also. Her name is Mary ann Block check out Blockcenter.com (Ithink it is) All of these should be good resources for you. Please consider these things, you have nothing to lose. I wish you the best and hope your prayers will be answered soon.

Sincerely,
B.

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