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Mom Gib

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Mom Gib Newbie

My daughter was diagnosed in 2010 when she was having 'belly issues', at the time she was only 3 years old.  Her Dr. at the time basically called and said her blood test was positive for celiacs and set us up to see a pediatric gastroenterologist with Dartmouth Hitchcock.  We saw the GI Dr. and opted to NOT have the biopsy done, just change her diet.  (I figured why put her through that if just changing her diet will eliminate the symptoms.)  She was on a gluten free diet for approx. 7 years and recently started re-introducing gluten into her diet.  She has not complained of any 'belly issues' at all since adding gluten back into her diet.  I have always doubted her diagnosis because of all the common symptoms she didn't have.  She was a normal, healthy little girl, besides bellyaches, always within the 95th percentile on the growth charts for height and weight (we were told that failure to thrive was VERY common in young children with celiacs).   I am beginning to question her initial diagnosis even more now that she is eating gluten and not seeming to have any issues with it.

I have just recently obtained a copy of her initial lab resultsfrom 2010 and they are very hard to understand...

Tissue Transglutaminase IGA = 1283.7 CU (states >30 CU is moderate to strong positive)

Tissue Transglutaminase IGG = 7.2CU (states <20 is negative)

Gliadin Peptide IGG (DGP) = 52CU (states <20 is moderate to strong positive

Gliadin Peptide IGA (DGP) = 7CU (states <20 is negative)

Immunoglobuun A = 57mg/dl (there is no range listed)

She now has a new primary doctor and at  my request we are having her labs repeated within the next week.  I understand celiacs is not something you 'grow out of' but I always thought a parent had to have it as well.  Neither I, dad or her sister have it.  I'm just curious if someone can advise on the above lab results and if they seem correct.  Thanks so much!


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cyclinglady Grand Master

Once a celiac ALWAYS a celiac!!!!!  It is for LIFE and there is no CURE.    ?  A gluten free diet can help.  Not treated and the risk of cancer and developing  other autoimmune disorders (like type 1 diabetes or thyroiditis) is possible.   I am sorry that your are mis-informed.  Celiac disease is no longer the picture of a malnourished child but can be a fat adult!  There are over 300 symptoms attributed to celiac disease.  Some celiacs are symptom free!  Symptoms can wax and wane.  It is genetic to some extent. 

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Please do some research about celiac disease.  I hope your daughter starts to feel well.  She should get annual celiac exam check ups.  If she has been eating gluten, consider getting the endoscopy so that you have NO doubt.  

I wish her well!  

RMJ Mentor

I have biopsy plus blood test diagnosed celiac.  I have no relatives with celiac.  I don't have "typical" symptoms.  I am strictly gluten free so my body doesn't attack itself with autoantibodies (antibody against tissue transglutaminase).  I am glad you are having her labs repeated.  They do not all have to be positive to indicate celiac disease - it only takes one.

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