Celiac, Colitis, Cystic Fibrosis? Chronic Diarrhea? I Am So Worried!

This might sound bad, but have you thought about weaning to formula? My kids were breastfed till 9 months with some solids included form 6-9 months, and the whole time, they had loose stools....they never got more solid till they were on formula and food, and later regular milk and food. I would try going to formula ( soy if necessary) first, before panicing about other things. My kids are 2 and 4 now, and still poop more than once a day, and sometimes it is soft/runny....but it is not ongoing/uncontrolable, and is not causing them pain or dehydration, so I don't consider this true Diarreah.

Just your saying she still having the loose stool no matter which foods you or she eat - the one common factor, no matter what else either of you are eating, is the breastmilk, so maybe it is giving her the loose stools....not that loose stools are necessarily a bad thing, like I said, Ithink most babies don't have "formed" stools while breastfeeding.

Good Luck, I hope you figure it all out!

Jessie

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The test for Cystic Fibrosis is simple. It is called a sweat test. It is like a
little watch the doctor puts on the babys wrist for a certain amount of time.
Simple non-invasive and can put your fears to rest.

Updated

The test for Cystic Fibrosis is simple. It is called a sweat test. It is like a
little watch the doctor puts on the babys wrist for a certain amount of time.
Simple non-invasive and can put your fears to rest.

2 moms found this helpful

Hi there!
I'm sorry you are going through such a worrisome time.
My nephew has cystic fibrosis that wasn't diagnosed until close to his first birthday. He is sixteen now, and when he was born they didn't do the test here as a standard newborn screening. They did the sweat test, but the big kind of clue for them to check it in the first place was that he had a lot of "grease" in is stools. I know, it sounds gross, but it wasn't just regular poo. It has like an oily stain that it would leave in the diapers. If you have seen it you will most likely recognize what I am talking about, That is one of the first red flags for CF.
On the upside, there are digestive enzymes that doctors can prescribe to aid in digestive disorders whether they are CF related or not. Try not to panic and just continue to do what you can to keep her as healthy as possible. Whatever her problem turns out to be, you are a dedicated mom and will take good care of her. If it turns out to be CF the Cystc Fibrosis Foundation and other organizations can offer good info and support. They are working to make better treatments all the time.
Please let me know if I can support you in any way.
God bless!
C.

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If the diarrhea and gas are the only symptoms, I going to say that she most likely doesn't have celiacs. My neighbor has it. Developed it in his 30's. Gets large sores on his face and swelling.

I thought Crohn's disease had more to do with constipation than loose.

Don't breastfed babies have looser stools than formula babies? There could be something in your diet that her body just isn't liking. Try keeping a food journal and see if you see a pattern. My son used to get diarrhea from pears and end up developing an allergy to them.

Also have you considered consulting a pediatric gastroentologist? They would be able to help with more insight and tests.

M.

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My son has Cystic Fibrosis which they found in his newborn screening. Symptoms of CF are loose stools that float, trouble gaining/maintaining weight, and respiratory issues. They did do a sweat test to verify that he did in fact of CF. If you have any questions please email me at ____@____.com

You are in my prayers
J.

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Have you considered it may be time to quit breastfeeding? I know that may be hard to hear, but at 11 months she is able and it will eliminate one factor of not knowing.
Also, Chron's isn't about constipation or loose stools, its about digestion in general. My bestie in high school has it and she couldn't stay out of the bathroom until she finally got in under control. With your family history it is best to continue with the testing and food journal until you get an answer. I only suggest stopping BF because then you will know without a doubt exactly what she is consuming.
I can't imagine the feelings you're experiencing...try to take comfort in the fact that you are on a path of knowledge, and knowledge is power. The more you know, the more you can help her.

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My daughter was milk protein allergic. I once joked that she was born congested... Before we knew, her pediatrician wanted to test her for CF also. However, we opted to test her for allergies first (she was 18 months; we had been fighting infections since she was 10 months). Once the milk allergy was confirmed, I had to completely cut cows milk ingredients from her diet--as in reading labels, no milk, butter, casein, whey ingredients. Once that was out of her diet, she improved 100%.

When you say she's eating "baked goods", is it totally milk/butter ingredient free? Because, it was hard for me to find baked goods without milk... I bought a bread machine and made goat-milk bread for her. If you're still eating food made with cow dairy or feeding her food made with cow dairy, try cutting everything containing milk products out and see if that helps.

By the way, my daughter outgrew her cow milk allergy by the time she turned 5.

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My nephew's main symptom of celiac was diarrhea, but he wasn't diagnosed until he was older. Some people with Crohn's find a gluten free diet beneficial. You could ask the doc about trying a gluten free diet (but it can take a couple of months to see results).

Good luck.

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I have Chrohns. My brother has Colitis. They are similar conditions just affect a different part of um well the same part. I've never heard of anyone having anymore than one, even in my support group. I don't think you can. But that is neither here nor there. I was just hoping it might make you feel better to know that.

I have Chrohn's and I go back and forth on what is going on. Mine extends all the way to my stomach. I go in and out of remission. Sadly when I'm in remission I eat... But I manage usually. You follow your diet. Keep a log and if something flares you, you remove it from your diet. Kinda like Celiacs if your child has that remove Gluten and their quality of life improves greatly. If your child has one of the digestive disorders it will just require education and a life change for you. It would be great to bring the child up knowing how to eat and not eat. No shell shock later in life.

My son was born with lots of problems and just got checked for cystic fibrosis and celiac's as a precaution really because he has failure to thrive. He also had heart problems so really they were just making sure his failure to thrive wasn't anything else. He does have diahrea all the time still and we play with his diet. He's 16 months old and still survives mainly on formula but he's growing slowly but surely. To be honest I'll be suprised if he doesn't have Chrohns. If he does we'll manage it. That is what you have to do.

So try and remember that. Most of these are far from a death sentence. Sure they are going to require a huge life change on your part and he'll never eat like other children. I drive by fast food places and sometimes feel sad but it was just the way it was/is.

If I have a flare there is always Prednisone if I choose that path. Although I've always tried to manage it on my own. But as a child I went from screaming day and night as an infant from being so ill and always having the big D. I'm now nearly 30, have 3 children, a husband and a relatively normal life. So don't lose all hope. :) Hey my brother even told me that as an infant I screamed day and night and he dreamed of smothering me. lmao. Oh he's a wonderful brother now... hehe

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My son had chronic diarhea that worried me. I slowed down with the milk products and it helped a little. I refused tests for all that because my daughter went through test after test for something unrelated a year before that turned out to be nothing and it was traumatizing. I researched and gave him a more balanced diet.
He outgrew it by three. Today, he still has a softer texture to his poops when he has too much cow's milk, but he's otherwise fine.

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Have you tried probiotics at all? They won't treat a disease, but if it ends up being an issue of unhealthy bacteria in her intestines due to the milk allergy or even just a virus, those can help recolonize the intestinal track with good bacteria. We use them with our DD (now 4) every time she has diarreha or vomiting and they really do work to help clear things up. I'd talk to your doctor about them and also check out your local natural food co-op or health food store as they'll have both books to read up on the condition and recommendations for the right type of probiotics.

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have you tested her for an egg allergy? And allergies are tricky to catch sometimes. You need to take out a certain product from her diet for weeks before introducing it again to see if she gets a reaction. Has she had a blood allergy test yet? This will give you a more detailed look at possible allergies. She may have an allergy to a common Ingredient in many foods that you feed her and that's what's throwing you off. One of my nieces was allergic to a multitude of things. Berries, wheat, corn, almonds, peanuts, milk, egg, yeast, etc.

Good luck.

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My 18 month old daughter is getting tested now for celiac, crohn's, cystic fybrosis (sweat test yesterday was in normal range as far as hospital concerned), and not sure what else. But her symptoms have been constant constipation and failure to thrive. I've just decided to not worry until they say it is definitely something. There's too many other things to worry about! I only say that because when my oldest was preemie in NICU one of the mother's that had been there for 6 months with her baby gave me that advice to only worry about the things that are definitely going on with your own baby and not the things that COULD be. It's hard to do at times. Last summer we went thru the rounds of testing for sickle cell and other anemia diseases and I had to remind myself of that then. It's been easier this time to just not worry and wait to see! With your family history I would definitely ask to start with the sweat test. Good luck!

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the only thing I kept thinking as I was reading your post was that it sounds like possibly a wheat allergy. But then I saw you were keeping a food journal, and figured you would have found it. Besides, it doesn't seem to explain problems during breast-feeding. I am sorry that you are going through this. It is a good move to get out here and get support. I will be praying for you. This is truly going to be okay, one way or another--I know it is.

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Please don't worry. Medicine has come so far and there are things they can do for many of the illnesses you mentioned. I would think Celiac, a friend's son has celiac and he had diarrhea all the time until he got on the gluten free diet. Why don't you try for the next week to get her on gluten free foods and see if it helps. You can google what foods but mostly it is no wheat, no flour, etc Many of the items have to be made from scratch but the grocery stores are now starting to have items that are gluten free. they are pricier though. I have a friend with crohns and she takes medicine and stays away from certain foods. I just got over a bout with Colitis, not ulcerative colitis, but regular. I was in the hospital b/c I was dehydrated but got meds and am back to normal. One thing you have to be afraid of is her getting dehydrated. I would google cystic fibrosis and see what the symptoms are and how to cure it. Let the drs do their testing and get it figured out....it is good that you will find this out so you can prevent further symptoms. please update us when you find out.

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reason for the Cystic Fibrosis(CF) test could be because of the loose stools. CF is not just about the lungs its also about the GI track. what could be causing the loose stools is she might not be absorbing the nutrients,calories,fats properly. which would cause loose stools. so going off the family history it is a BIG possibility that your little girl could have it. the test is non invasive. they can either do a sweat test, which i have personally done as has my oldest son when he was about 6 days old, and there is also a blood test, which my oldest son also had done. in my opinion the blood test is a better way to tell. it will say yes or no. if it says yes then it will also be able to tell you what mutations your girl has and if it says no then it can tell you if she is a carrier. either way it tells you more with one to two small draws more answers than the sweat test. my oldest boy had surgery at 5 days old and we got the diagnoses at 7 days old. it has been a little rough for a first time mom but we have dealt with it and will continue to deal with it. he is pretty healthy. he is 6 years old and acts and looks like a 6 year old. he sees his special doctors every 3 months right now. don't believe every thing you read about CF either. a good site to visit to get more information is www.cff.org it has a lot of good info. one thing you should know is that treatments have come along way and there are new drugs and therapies in progress right now. i want to say they are trying to come out with a med that will fix part of the problem. life expectancy has come a long ways also. six years ago i was told my son was expected to live till he 36.5. now they are saying 38. it may not seem like much or very far but to me it is. compared to way back 70's-80's i think, life expectancy was only around the age of 2. if you have any questions feel free to email me.

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I applaud the doctor for checking for Celiac disease. Hopefully, that will come back negative (it is an auto-immune disease, in which you cannot eat anything--even the tiniest amount--with gluten/gliadin--wheat, rye, barley--in any shape or form. Very, very restrictive).

If the test does come back negative, that does not mean your daughter doesn't have a severe intolerance to gliadin (I, my husband, and my daughter do) or to gluten--both proteins that are found in wheat, rye, barley.

While cutting out anything made from these three grains out of the diet vastly improves symptoms, if you happen to get a "little bit" in your diet by accident, that "little bit" won't rot your gut, so to say, and cause further immune problems like it would if she had Celiac disease (out of the two problems to have, gluten/gliadin intolerance is much preferred over Celiac disease).

People can have different reactions to eating gluten/gliadin--my daughter and I both get constipated; my husband has diarrhea. Most allopathic doctors will not test for food intolerances; we had to test with a Naturopathic doctor to discover our intolerance.

The fact that your little one has been eating solids--and a lot of cereal and baked goods--points to the fact that Celiac disease and/or gluten intolerance could very well be (one) of your daughter's issues. I would seriously look into it. And if all tests come back negative--I would still do a NO GLUTEN self-test for 4 weeks and see if you notice any type of improvement at all.

Once the body has been having issues with diarrhea, and it's been long and ongoing, it's very hard for the body to quiet down and repair itself. Have you been giving your daughter a good, high quality probiotic that will help restore the microflora of her gut? I would assume she doesn't have much good microflora in her gut, if she's been having almost nonstop diarrhea.

Also, the difference between food allergies and food intolerances is that a person can eat a food (say, something with gluten/gliadin in it) and not have symptoms show up for 3 or 4 days--or maybe not even for a week or two. That's known as a delayed reaction. So say you eat a piece of gluten bread on Mon, and then don't eat another piece with gluten (maybe, say, some pizza) until Weds, then maybe you eat a muffin or a piece of cake or a sandwich on Fri or Sat--if your daughter's (is she breastfed?) body doesn't react to the fact that you ate something with gluten on Mon until Weds, then you have a cascading event of her being sick--but you didn't eat anything that should manifest in her being sick.

I would urge you to take your baby to a very good, respected, and knowledgable naturopathic doctor (one who works with pregnant moms or specializes in small children would be best) and have them test your baby for food allergies, food intolerances, heavy metal toxicity, and deficiencies in minerals, vitamins, amino acids, and enzymes. I've been there. The tests are expensive. But it was the best thing I ever did three years ago for both myself and my family.

If you don't find the answers you seek in one direction--then you need to think about going a different direction to find help. For your baby's sake, please look into alternative medicine.

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My daughter had loose stools, I called them explosions until I stopped breast feeding. Also, my other daughter who was allergic to milk could not have anything with milk in it including baked goods, bread, margarine, etc.....
As for Celiac most children with celiac do not grow and it sounds like she doing great in that area. I would not put her on a gluten free diet without the testing first because it will alter the test results. It is hard not to worry but try not to until the test results are back. My daughter was tested for a brain tumor when she was 5. It was one of the longest weeks of my life and everything came back fine. Best of luck!

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I 'm sorry you and your child are going through this. One thing popped into my head as I was reading about your situation. I remember watching 19 Kids and Counting when their premie was having all kinds of intestinal problems. The docs were all puzzled for a while, but finally discovered the baby was actually lactose intolerant! Her mom had to stop breastfeeding and go to a lactose-free formula. Within a few days, her symptoms improved, and she could be released from the hospital. Maybe that's all it is? I really hope so.

Is she seeing her pediatrician for this or a pediatric gastroenterologist? If you don't already, I really recommend a pediatric gastroenterologist. They deal w/ problems like these all the time and, I think, are less likely to subject her to unnecessary tests.
Hope you get answers soon, and please keep us posted :)
She's in my prayers :)

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One of the symptoms of CF is diarrhea that won't go away. I would just ask to have her tested for it since it does run in the family. My best friend had it and she lived a very productive life. The thing is you are tested while being pregnant for the gene. They also test them when they are born. I would call the OB that delivered her and ask them if she was tested for it. If she was and there was nothing there then I wouldn't worry about that cause it does not develope overnite. They are born with it. I wish you all the luck in finding out her problem.

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It sounds like you are very worried. At this point, it is just important to find out what your daughter is dealing with so she can start treatment and feel better. Whatever it is... you will deal with it. You are strong and you will find strength you never knew you had.

Crohn's, Cloitis, and Celiac are disease that can be managed with medication.

Because of the family history and constant diarhea...I suggest you have a genetic test done to rule out CF. It is better to know one way or the other. If your child ends up having CF, Minnesota has one of the best CF Centers in the country at the U of M.

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Minnesota has had Cystic Fibrosis on their newborn screening since 2006. Was she born in MN? If so and her newborn screen came back negative it would be very unlikely that she has CF.

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If your daughter is exclusively breastfed, I'm wondering how you know she has diarrhea? My daughter is extremely explosive, and her poops are different from my boys', but breastfed babies typically have loose stools. My second boy prefers fruits and veggies to breads and meats, and always has, so his bm's have always been very loose. I suppose 5x a day is quite frequent for an 11 month old, but if her average is in the 1-3 range, that seems normal too. On one end of normal, but still within the range of normal. If your ped is suggesting all this stuff, though, perhaps there is more to it than I'm thinking. MN does do the infant screening and your ped should have the results. Most of the time, nothing is wrong, so they are very casual in mentioning it, but we got both a phone call and an update at the next well child visit, with both our kids born in MN. If CF is one of the things they test for, it seems odd your ped would ask about it.

Updated

If your daughter is exclusively breastfed, I'm wondering how you know she has diarrhea? My daughter is extremely explosive, and her poops are different from my boys', but breastfed babies typically have loose stools. My second boy prefers fruits and veggies to breads and meats, and always has, so his bm's have always been very loose. I suppose 5x a day is quite frequent for an 11 month old, but if her average is in the 1-3 range, that seems normal too. On one end of normal, but still within the range of normal. If your ped is suggesting all this stuff, though, perhaps there is more to it than I'm thinking. MN does do the infant screening and your ped should have the results. Most of the time, nothing is wrong, so they are very casual in mentioning it, but we got both a phone call and an update at the next well child visit, with both our kids born in MN. If CF is one of the things they test for, it seems odd your ped would ask about it.

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I followed-up with her and she told me that it took only 2 days and the diarrhea cleared up -- YEAH!!!!

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Sure hope this helps your little one, too!

Bear in mind, too, that there is a WIDE range of normal for pooping. I was once told by a doctor anywhere from 10 stools a day to 1 a week is within the range of normal - for adults! (Turns out I have an irritable bowel, but for me, that's just a matter of exercising, avoiding triggering foods, and making sure I get amount of fiber my body needs.) My oldest has always had very regular, very "normal looking" poops - my youngest, it seems, has inherited my digestive system. He's nearly 3, and has had very very few "solid" poops in his life - but they're not watery, or any of the worrisome colors, or mucus-y, or oily - just very very soft. He eats very little dairy, no nuts (I was off both when I was breastfeeding.)

My point is - it's really easy to get overly concerned about poop. There is great human variation in the ways we excrete waste. Almost all of it is within the range of normal. It's great that your pediatrician is considering all the options, and that she is responsive to your concerns. It's also great that you now have so much information about family history, so that you can be informed and watchful. But also be assured that your daughter sounds perfectly normal to me - she's growing, gaining weight, happy and engaged - she just happens to be someone who poops often and loosely.