help for non verbal child with possible celiac

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chelsmom
New Member


Date Joined Oct 2009
Total Posts : 9
   Posted 11/30/2009 9:44 AM (GMT -6)   
I have a 16 year old daughter with Rett Syndrome, she is non verbal and only communicates occasionally with her eyes, we have to ask the right question for her to look at us and we're assuming it means yes. :-) She has been having alot of trouble for almost a year, she had her first upper endoscopy in Jan. it showed she is lactose intolerant and celiac negative at the time. Since then we've cut out all dairy and she is still having troubles with abdominal pain. She had another scope, colonoscopy and pill camera in June, that showed some erosion in her small intestine. She has had elevated sed rates since, usually around the mid to upper 20's. Her GI doc was thinking more along the lines of crohn's and treated her with entecort over the summer which seemed to give her some relief for about 2 months. In Oct. her pain came back so he put her back on entecort and last week we had an appt with him, told him it isn't seeming to be working this time. Her sed rate was 27 and he's waiting on some stool tests for bacteria, parasite type stuff, liver testing in her blood. But, we never discussed celiac's, I had put it out of my mind since Jan. because her test was negative. The end of last week I had had enough friends ask me about gluten that I figured I'd better research it. Well, I'm reading that the tests aren't always correct so now I'm really wondering, especially since she has problems with her small intestine. That is about the only evidence we've gotten so far, other than extreme pain usually later in the day. I've also checked the ingredients of most of the food she eats and she's getting a ton of gluten! Sat. morning I started her gluten free diet and I also sent for the stool test from enterolab. I hate to put her back on gluten for a test if we can do it being gluten free. She had better days Sat. and Sun without any gluten. Some pain later in the afternoon but nothing like before. I am wondering (sorry for being so long winded here), how long until you've all seen results from a gluten free diet. I appreciate all of your insight to this since my daughter can't tell me what she is feeling, I have to guess and assume.
Thank you,
Tammy

GottaSki
Regular Member


Date Joined Nov 2009
Total Posts : 47
   Posted 11/30/2009 3:42 PM (GMT -6)   
Hi Tammy-

Your daughter could still have Celiac Disease & or be gluten intolerant -- many believe gluten intolerant is just another name for undiagnosed Celiac Disease.

Antibody tests and endoscopic biopsy are often false negative, but rarely false positive.

Since you have already started gluten free, I'd suggest you stay with it for at least 3 months or longer. Some improvement can happen immediately, but many symptoms don't improve for some time as it can take quite awhile for the intestine to heal and start to absorb nutrients properly. Given her young age, I'd guess you'd see major improvement during the first months - some older celiacs take a year or two to heal.

If there is major improvement in symptoms, you'll have to ask yourself if it is worth going back on gluten for 4-6 weeks in order to have more antibody testing/biopsy done.

While I was being diagnosed, my Celiac GI tested many vitamins and nutrients to aid with diagnosis. Celiacs tend to be low in B-6/B-12, D, Iron, Ferretin, Zinc and Copper. These blood tests could be done now for your daughter as a marker. I am currently being tested every three months for these and have seen major improvement since going gluten-free 8 months ago - I also supplement with a gluten-free multi-vitamin, B-6/B-12 and D.

Good Luck to you and your daughter.
Fibromyalgia 10/27/09 & Celiac 3/26/09

Med/Supplements: Flexeril at bedtime; Multi-Vit, B, D, Calcium, Magnesium, Malic/Acid, Fish Oil, Probiotic

Still a mystery - heat/humidity intolerance


chelsmom
New Member


Date Joined Oct 2009
Total Posts : 9
   Posted 12/2/2009 7:48 PM (GMT -6)   
Thank you for your reply. It's been 5 days now and I'm seeing some results already, she isn't in such extreme pain for hours each day. Maybe an hour or 2 and not so miserable, just more uncomfortable. We brought her to an endocrinologist in Aug. thinking she was low thyroid and her results came back negative but she she had low vitamin D so this is interesting hearing what you have to say about vitamins. I think we'll definitely stick with the gluten free diet for now and see what the enterolab stool test results say before trying her back on gluten and testing that way. I don't want her anywhere near gluten if it makes her feel as sick as she has been.
Thanks!

GottaSki
Regular Member


Date Joined Nov 2009
Total Posts : 47
   Posted 12/3/2009 5:34 PM (GMT -6)   
You are welcome! I hope she continues to improve -- great news that you've already seen some improvement.

I joined this forum because of their fibro section, but if you have more questions or need support with regard to Celiac Disease, I'd suggest you visit celiac.com -- it is a very active forum for celiac support, information and recipes!

-Lisa
Fibromyalgia 10/27/09 & Celiac 3/26/09

Med/Supplements: Flexeril at bedtime; Multi-Vit, B, D, Calcium, Magnesium, Malic/Acid, Fish Oil, Probiotic

Still a mystery - heat/humidity intolerance

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