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Diagnosed with gluten intolerance and celiac disease. Found ocult blood in stool. Any advice?

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My 10 year old daughter was diagnosed with Gluten Intolerance about a year ago after she gradually fell down the growth chart from close to 100th percentile at the age of 3 to 5th percentile at the age of 7. It took 2 years of convincing the doctors to test her and finally they found ocult blood in her stool and very high immunoglobulins in her blood. She had a GI consult who did a diagnostic endoscopy and confirmed findings consistent with Celiac disease.
She has been on a gluten free diet for 1 year now but has not shown significant growth. She has gained 6 lbs from 49 lbs to 55 lbs and height has gone up from 48 inches to 50 inches. However we feel like that would have happened if she was not on a gluten free diet. She is still around 5th percentile and is getting us very worried. We had her tested recently for her Ig levels and they were normal or borderline.

So could there be other reasons? please advise what to ask her specialist and what else to look for that could be causing this lack of growth.
Posted Fri, 21 Dec 2012 in Digestion and Bowels
Answered by Dr. Abhijit Deshmukh 7 hours later

Thanks for the query. I understand your concerns and I shall try to provide an useful and helpful answer.

Though it looks like your daughter is suffering from Celiac disease or gluten sensitivity, only biopsy and immunoglobulin levels are not sufficient levels to confirm the diagnosis. Were her tissue transglutaminase of IgG or IgA (antibodies) levels elevated or whether anti-gladin or anti-endomysial antibodies were elevated? If yes then it confirms the diagnosis.

Also it is important to know if her hemoglobin was low (anemia) and has it improved with treatment.

Now if her diagnosis of gluten sensitivity was correct and still she is not responding to treatment (both in the form of persistent growth or anemia) then we need to confirm "non response" by repeating antibody (specific once) to check for reduction in level as compared to pre-treatment levels and repeat biopsy to see if the endoscopic changes have reverted.
If your daughter is found as a case of "non responseā€ then we need to look/discuss the following things
1) Compliance to gluten free diet (deliberate intake since she is child with friends or at school without you knowing about it - to ensure strict diet)
2) Improper understanding of gluten free diet and inadvertent intake
3) Possibility of refractory celiac -rare entity - such cases may need additional drug therapy like steroids
4) Rule out uncommon but disease associated with celiac like thyroid dysfunction (checking thyroid function tests), vitamin D deficiency, bacterial overgrowth syndrome, associated diabetes or unrelated disorders like growth hormone deficiency

Sometimes avoiding oats and milk/ milk products may also help additionally

Hope this answers your query; please do reply in case you have further questions.

Wish her a speedy recovery...

Dr Abhijit
Above answer was peer-reviewed by
Follow-up: Diagnosed with gluten intolerance and celiac disease. Found ocult blood in stool. Any advice? 12 days later

Thanks for your detailed response. I will get a copy of her test results, however I am sure they were relevant to the diagnosis and yes she did have anemia when she was diagnosed, however since on gluten free diet, she does not have anemia any more.

We had an appointment with her GI today and he said that although the antibody levels have fallen but have not fallen as significantly. There was a repeat blood test done today (last one was 3 months ago) pending which she may need to get another endoscopy.

As per her diet, we are very strict and the school does not allow lunch sharing either. She is very conscious herself what not to eat. We will try to eliminate oat from her diet as well as per her nutrition consult try to give her high caloric food instead of "healthy meals". like using butter instead of margarine/spread and using clotted cream as a spread on corn bread.

Definitely hoping its not a Growth Hormone or Thyroid issue but will request her doctor to get those tests conducted as well.

Thanks again,

Answered by Dr. Abhijit Deshmukh 8 hours later
Thank you for the response and appreciation.

There is all hope that she may improve slowly and gain on her growth chart.

Apart from the current problem, just take care of her psychological aspect as children find it difficult to cope up with all this.

Wish her a speedy recovery...

Let me know if you need further assistance.
If all your queries are answered, please close this discussion.

Above answer was peer-reviewed by
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