Possibly Misdiagnosed?

[ShellyJB]

I was given a blood test 2 1/2 years ago and my doc said I was "Highly allergic" to gluten. I believe I can pinpoint when my issues began. I have been gluten free since then. I had a endoscopy and colonoscopy 2 weeks ago. My doctor told me after the procedure was finished that I had GERD and diverticulitis and said he took multiple biopsies. He then asked me if I have an aversion to gluten. I was still in a drugged stupor and didn't think to ask him what he saw that made him ask that. Fast forward two weeks to today and I went in for my follow up. The doctors PA was with me and said that all of my tests came back normal and she isn't sure what all of my symptoms are about. She has ordered an abdominal scan. My issue with all of this is that I have been gluten free for 2 1/2yrs and he still did a biopsy that came back negative. I guess I should fess up, there is a possibility that I am not fully Gluten-Free. Since it has always been considered an allergy, I stay away from gluten foods that tend to cause my reactions. So there is a possibility that there might be some gluten in there somewhere. When I pushed the subject the PA said she could test again with a gluten but she didn't think it would make a difference. I have so many of the symptoms of a Celiac. I have 2 aunts with Celiac. I have been gaining weight very rapidly. I had always thought that Celiacs were skinny people,malnourished, so looking in to it was never on my radar. The thing that scares me the most is my weight gain. The comment I got today was "well we all hit that age when our metabolism slows down". I'm 35! Should I push for further testing?

[kareng]

If you have been gluten-free for 2 years, you should not show any celiac damage. It should have healed by now. However, Celiac isn't an allergy. I am not sure if the doctor just called it that as it might make more sense to people or what. You might want to get a copy of the blood work and see what was actually tested.

It is possible to have Celiac and other problems like diverticulitis, thyroid issues, chicken piox, etc. They may have nothing to do with Celiac.

[BlessedMommy]

I agree, the avoidance of gluten could have contributed to the negative biopsy results.

 

There's actually no such thing as a gluten allergy, but sometimes people call celiac that to get across the need to avoid gluten. 

 

Do you have your bloodwork from 2 years ago handy?

[ShellyJB]

OK so here is what my allergen test says:

Allergen gluten IGG

Result: 35.6

Ref. Range: <2.0

Units: MCG/ML

High

[SMRI]

Well, given they didn't run the right tests it is hard to know but, I would say that a test with a range that is supposed to be less than 2 shows up with a 35.6, it's very positive, whatever it's testing for.  My son just had labs run and they ran a bunch of allergy tests and none of the actual Celiac testing....made me REALLY mad!! so now he has to go in and get tested for real...grrrr...

 

If you really want to know, start eating gluten again, 8 weeks of eating a slice or 2 of bread every day-or similar, and get the Celiac panel done.  Now if you really have a gluten allergy, that could cause some major issues.

 

Ruth--there is such thing as a "gluten allergy", but it's really an allergy to wheat, etc. It causes allergy symptoms without the intestinal damage.