(2) Positive TTIGA, 1 positive EMA, Negative Biopsy

[JMW331]

Hello Everyone,

My 5 year old daughter has had (2) positive TTIGA, 55 and 64.  Did endoscopy with (6) samples which came back negative.  GI did an additional TTIGA and EMA test with both came back positive.

Dy says she thinks my daughter has Celiac, but not sure.  Told us to keep her on Gluten and do another biopsy in 3 months.  We don't want to put our daughter through another biopsy, and the cost of another test will be a burden.  We think maybe we caught it early before damage has happened to villi.  I can't imagine continuing to give her gluten in order damage her stomach?

We're going to get a second opinion.  Has anyone dealt with something similar?  We're so lost!  She had chronic constipation and stomach pains.  No diarrhea.

[No more doughnuts]

Oh I totally agree with you!  Biopsies sometimes come back negative...I have researched...and I decided not to have a biopsy because I will get so sick if I eat gluten and that's what they require before the biopsy. 

I agree with you not wanting to subject your daughter to that.  I would keep her on a strict gluten-free diet  (not just food...but soaps, shampoos, check them for gluten as well.)  My body wash had gluten!!!  So did my shampoo.

Is she lactose intolerant?  I am...so I wondering if she has a problem with lactose?  Gluten is just BAD for humans period.  I have listened to many doctors (on youtube) who have researched it for many years.  Your daughter is better off without it.  I hope she improves and take care!

[cyclinglady]

Intestinal damage is often spotty and can be missed.  We just had a new member diagnosed via a camera pill.  His damage was beyond the reach of the endoscope.  Please consider getting all the medical records and lab reports. More than four biopsies should have been taken and at the appropriate areas as recommended by celiac centers and the American GI Group.  Not all doctors follow recommendations.  

Getting a second opinion might be prudent.  That is why having her medical records is important.  It will save you time and honesty, everyone should maintain them themselves (I do).  That second doctor can at least assure you that everything was done properly.  

Some doctors will give a diagnosis based on just the blood tests (she had three positives on the panel), but for whatever reason some are not willing to condem a patient to a gluten free diet.  Follow-up blood testing can help determine if the diet is working.  They do this in Europe often for kids.  

Kuddos for you for researching and being persistent!  Let us know if we can help more.  

[JMW331]

Thank you both for your replies. In process of getting medical records this AM.  Unfortunately, the GI office that we wanted second opinion with won't see her until they review her records first.  We're very frustrated as we don't feel any of our medical providers are taking this very seriously.  They don't have to spend 1-2 hours every night trying to get her to sleep while she's in pain!  She's been Gluten free for 10 days.  Still very little if any improvement.  We know we have much to learn about where Gluten hides, but we feel we've been pretty good at removing all gluten from our house.  (new, pots, pans, toaster, can opener etc) 

[cyclinglady]

I am sorry she is in pain.  Healing from celiac disease can take weeks, months to years.  Why?  The gluten free diet has a steep, learning curve and mistakes are made.  There can be collateral damage (for me it was anemia, fractures, and osteoporosis).  

Be patient.  Do not eat out until she is well.  See if lactose is an issue (it usually resolves once healed).  Other intolerances can include corn or soy.  In three months get her antibodies rechecked.

Since she is a kid, and even though I push for non-processed junk foods, bake her some gluten-free cupcakes and cookies.  Freeze them so that she never feels left out of festivities.