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

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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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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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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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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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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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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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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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. ____@____.com

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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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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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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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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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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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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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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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