Positive Blood Test, Negative Endoscopy, Addisons, Something Else?

[ghgraph]

My 23 year old daughter has been feeling unwell for almost a year, mostly fatigue. After seeing all kinds of doctors, a gastro did the blood work for celiac. She came back highly positive, though she's never has stomach issues. Though her endoscopy was negative, a second blood test was again high positive. She has now been on the diet for over 3 weeks and feels no changes and is very discouraged. In a few weeks, she is seeing an endocrinologist to be tested for Addison's disease, which I read can also be related.

I feel so frustrated for her, and wonder if a) we should find a doctor who is specifically focused on celiac and is there such a doctor) and is there another reason why a blood test would be highly positive but it isn't celiac? As she said yesterday, without any feeling of change, she doesn't have the motivation to stay on the diet. We're so lost!

[cruelshoes]

The celiac panel is made up for a group of tests. Some of them can be false positives because of other conditions. What blood tests were run, and what were the results (with reference ranges).

[cruelshoes]

Here is some more info that may be of use to you.

Complete celiac blood panel:

Antigliadin IgA and IgG

Anti-tissue Transglutaminase Antibody (tTG), IgA and IgG

Anti-endomysial (EMA), IgA and IgG

Total serum IgA (this rules out IgA deficiency)

The EMA is highly specific to celiac disease. The TtG and Anti Gliadin IgG can cause false positive in the presence of other conditions:

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It is important to note that some people with Type 1 Diabetes, Hashimoto

[Meran]

According to what I've read, it can take 6 months to several years to 'heal' a colon; depends entirely on amount of damage..

If she's diagnosed by the blood test, yes, the damage could be in a place that the scope didn't find, at that time.. IMHO, she should just bite the bullet. It's hardest the first 6 months.. after that, I've found that it's not quite as hard.

I've been on a gluten free diet for 19 months now... everywhere I look, it's stuff I can't eat.. but I'm not all that hungry anyway... not real hunger. Cravings, yes, It helps that I've never even LIKED things like pizza...

But it's the DECISION that is the turning point.. she hasn't truly made that one yet.

And also, IMHO, I think the world should change off gluten. I look around me, and see so many people who are swollen and uncomfortable, and quite possibly have gluten problems... I know they're diabetic (extreme obesity can't not be, from what I've seen)... and the more you read about problems gluten CAN cause... well, you understand from there..

Hang in there. It's frustrating when your child does something you consider harmful. But it's her body, and if she won't take care of it, you can't do it for her... just guide, gently.

Meran

[Phyllis28]

It is possible that she has not gotton all the "hidden" gluten out of her diet or cross contamination might be a problem.

Is the kitchen gluten free?

Have the you replaced the non-stick pots and pans, the cutting board and the plastic food storage containers?

It is best to stick with whole non-processed naturally gluten free food to begin with. I agree with the removing the dairy for the first six months. I have also seen it recommended that soy be removed and reintroduced later.

Hope your daughter feels better soon.