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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

4 Yr Coeliac, gluten-free Nearly 12 Months, Still Bloated & Tummy Aches
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3 posts in this topic

My son was diagnosed with Coeliac disease December 2012 (TTG 262 and positive biopsy). He was gluten free immediately after. Big improvement very quickly - bloating, tummy aches cleared up and normal, formed bowel motions.

 

Around April, the bloating started to return occasionally. Saw a dietitian who suggested lactose intolerance (never tested him though) and we took him off lactose. Can't say it made an obvious difference to the bloating.

 

In May, tummy aches returned several days in a row, plus more bloating - our family doctor put him on Ranitidine/Zantac. That same week he had his specialist follow up. Specialist took him off Ranitidine, disputed likelihood of lactose intolerance (said that the villi weren't blunted enough). No explanation for the bloating or tummy aches. Specialist did a follow up TTG, which was "normal" (9), also tested for nutrient deficiencies and anaemia - all normal.

 

Hoping that it would eventually solve the problem, and since it wasn't hard, we kept him off lactose.

 

July onwards, the bloating becomes a daily event. I mention it at the Specialist follow up again, and the Specialist makes a note that I said he was bloated, but that's all.

 

September - took him off all dairy, which co-incided with being dry overnight for the first time ever a few days later. I don't know if he actually does have a dairy intolerance, but he seems to be more likely to have a dry night if he has not had dairy. He is already additive and preservative free as we hardly eat any processed food - most is home cooked.

 

Mid October, the tummy aches become daily - worse in the late afternoon and always present when he wakes in the morning. His appetite is still good.

 

Early November, I take him back to the family doctor, with bloating and tummy aches, who again prescribes Ranitidine (Zantac). Has now been on Ranitidine for a few days, but it's not clear whether this is working. And if it is, should a 4 year old really be on Ranitidine???

 

Help! Was it just naive of me to think that Coeliac + gluten-free = healthy, well child?

 

I really did not expect to still be dealing with bloating and tummy aches nearly a year after being gluten-free. I don't know what to do next, it seems like we are being fobbed off.

 

*By the way, our specialist is a general paediatrician who has "an interest" in coeliac disease, as our local health board doesn't have paediatric gastro services. We don't even have access to state funded dietitian. * Our family doctor is a gluten believer  -  she will recommend gluten-free diets to non-coeliacs. I'm just not very confident in her management of our child coeliac.

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A few ideas:

 

Soy intolerance

Corn intolerance

Cross contamination somewhere

 

edited to add more:

 

He could have issues with rice, quinoa or even gluten free oats.

 

The best bet at the moment would be to record everything he eats in a food journal to see if there is a connection.

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A few ideas:

 

Soy intolerance

Corn intolerance

Cross contamination somewhere

 

edited to add more:

 

He could have issues with rice, quinoa or even gluten free oats.

 

The best bet at the moment would be to record everything he eats in a food journal to see if there is a connection.

Thanks for your reply, soy and corn were the next suspects on my list.  It's good to know I am on the right track.  During the week that the tummy aches flared up, my husband did the shopping and got soy milk instead of rice milk.  He is back on rice milk, but the tummy aches are still present.

 

Cross contamination is not likely at home, but I do wonder about kindergarten.  He has become a finger nail biter, and I wonder if he might be picking up gluten somehow from things that other kids touch after they have eaten.  We have holidays coming soon,with six weeks off pre-school and if the symptoms disappear,  that might answer the question.

 

He doesn't have any oats, as they are not recommended for coeliacs where we live.  I have wondered about other grains - but hope it's not that.  It will really put the squeeze on if he can't have rice.  I will get onto systematically keeping a food log.

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