5yr old post diagnosis continued symptoms

[nattaliec]

hi, my daughter was diagnosed at age 4yrs (5 now) with coeliac (this was based on symptoms - diarrhoea, stomach pains, gas, fatigue and anaemia) and a positive iga. The doc wanted to do an endoscopy but I refused based on her age and the need for GA. Within 3 days of starting a gluten-free diet her diarrhoea stopped completely (had been 5 times a day and with no solid stools st all). She is no longer anaemic and her fatigue got a lot better. However her stomach cramps (whilst not as bad as they were) have persisted. We’ve gotten incredibly strict with her gluten-free diet (no cross contamination etc etc) and over the holidays she seemed to improve a bit. We did bloods again and the doc says they’re fine tho some were high but her stomach pains are increasing again and her gas is ridiculous. Poor thing smells of cabbage and broccoli all the time and she can’t control her wind. I’ve switched her onto packed lunches at school so I can control her diet but they’ve assured me no cross contamination can happen.  I’m worried there’s something else going on or are these persistent symptoms common in coeliacs? Thanks 

[Betsy Bee]

I hope this will help her as I was still sick after getting off of gluten. Turned out I had antibodies to more than just gluten. There is a test called Cyrex Labs Array #4 that tests for the most common foods you can also react to if you have Celiac Disease or Gluten Intolerance. I had antibodies to gluten free grains like rice and many seeds like sesame. Also, I had antibodies to eggs really bad. Also, have her GI doc do bloodwork for IBD as Crohn's and Colitis can also go along with Celiac Disease. Also, I take a probiotics and enzymes 15 minutes before each meal to help with digestion. 

[nattaliec]

Thank you for this. I didn’t know you could do blood tests for IBD? This is what I’m most worried about if I’m honest but docs here (uk) have implied that an invasive test (endoscopy/colonoscopy) is the only way but there is a risk of bowel perforation and I’ve just lost my father to that (cancer related so different I know but I can’t face it ). 

[trents]

It is very common for celiacs to have developed dairy intolerance and intolerance for oats, soy, eggs and corn are also common. The dairy intolerance often goes away with time and a strict gluten-free diet. The dairy intolerance can be due either to the sugar in milk (lactose) or the primary protein, casein.

[RMJ]

I was going to say basically the same thing as trents.  Perhaps she has developed an intolerance to another food.

[nattaliec]

Thanks all. We are a mostly dairy free household due to me and my son being intolerant so she’s already on almond milk and dairy free butter but I can see that some has slipped in due to buying gluten free products that contain it. I’ll try eliminating that and see how we go. 

[ForwardMotion]

Yes, definitely consider other food intolerances.  As the body adjusts to no gluten, it is not surprising that a few weeks or a month later, symptoms start returning.  Gluten is often the main culprit but then some individuals may note that dairy/casein, soy and corn (which the latter is molecularly close to gluten) can contribute to unwell symptoms.  I recommend keeping a food/symptom diary and start with just one new potential "food intolerance", i.e., dairy.  Remove all products containing dairy (in addition to gluten) for a few days and then reintroduce a small amount of dairy, i.e., slice of cheese or yogurt, and see if you notice a return of symptoms.  Then the following week, avoid gluten and now, dairy (if she has issues) and test soy-containing products in the same way.  Then, corn.  Truly it is the only way to figure this out.

I personally am gluten-free, dairy-free, soy-free and corn-free.  It is not difficult.  Why - because I want to feel good and enjoy living.  Good luck!

[nattaliec]

Thank you. With corn is that things like corn flour or sweetcorn as well as she’s been having sweetcorn recently…(not sure if that’s a very dumb question!) she was tested for food allergies and came up negative to everything including wheat. Can foods still be causing a reaction if tested negative as an allergy? 
thanks 

[trents]

16 minutes ago, nattaliec said:

Thank you. With corn is that things like corn flour or sweetcorn as well as she’s been having sweetcorn recently…(not sure if that’s a very dumb question!) she was tested for food allergies and came up negative to everything including wheat. Can foods still be causing a reaction if tested negative as an allergy? 
thanks 

Food allergies and intolerances are not necessarily the same thing. The immune system is complex and has various pathways. Consider the fact that celiac disease is an intolerance to the wheat protein gluten but many or most people with celiac disease will test negative for a wheat allergy.

While I'm at it, the term "allergy" is terribly abused. We commonly use it in a way which is medically incorrect and separate it from it's original connection to anaphylaxis. So, we have this collection of terms that are vague and often used interchangeably like "intolerance," "sensitivity" and "allergy".

Edited January 30, 2024 by trents

[knitty kitty]

@nattaliec,

Has your daughter been eating lots of gluten free processed foods?  

A diet high in carbohydrates (and low in nutritional value) can result in Small Intestinal Bacterial Overgrowth which will cause gas (wind), diarrhea, and bloating. 

The anemia and fatigue can be helped with vitamin and mineral supplements.  Has your daughter been checked for other nutritional deficiencies?  Vitamin D helps calm inflammation and regulates the immune system.  

Try a whole foods diet.  Leave processed gluten free foods until after she's feeling better.  Meat and fresh vegetables are much better than processed foods.  

Hope she feels better soon!