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I Went To The Gastroenterologist Today

CGally81

By CGally81
in Coping with Celiac Disease

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CGally81 Enthusiast
CGally81
Posted

Okay, I went to the gastroenterologist today, and we talked for a bit. He asked how I found out gluten was the problem, things like that. He says that the fact that I feel better off gluten isn't proof in and of itself that I have Celiac, as "many people feel better off gluten". But he wants to get me tested, of course.

So... getting tested for the biopsy and blood work would involve... eating gluten for a week before the test. No surprise. I told him there was no way I was going to put myself through the symptoms of feeling like a zombie and having intense hunger spikes for a whole week, since I'd been doing that for months and it wasn't pleasant.

So he offered instead of get me tested for other things to rule them out - to indicate that I have, or may have, Celiac via process of elimination. That way I wouldn't have to eat gluten. I was pretty happy about that, until I read the requirements for taking the test.

Basically, for 2 weeks, I'd have to limit my diet. I can do that... though corn (popcorn) and fish (tuna fish) are big parts of my diet now. And the day before the test, I'd have to subsist on nothing but water all day. I can't do that! Right now I'm in the "hungry all the time" phase, and I'd have to wait until my hunger is at normal levels before I attempt going a full day on water alone! I asked to put that off for a bit.

The only thing I can do right now is get blood tested for the DNA that might indicate it, and get my vitamin A and D tested. I'm going to do that as soon as I can.

I just wish there were an easier way. I hate having this constant hunger, and if it weren't for that, I'd sign up for the biopsy (of the "prove I don't have other conditions" variety, not of the "eat gluten before you take it" variety!) right away.

I asked about drug trials, and he said I'd have to sign up at a university for one. There's a university within driving distance of my home.

Although I have a relative with Celiac - a niece of my grandmother - I don't have any immediate family members who have it, or show signs of having it. My dad is diabetic, but type 2 (progressed to type 1 over time), and it was through his own poor diet and lifestyle that it seems to have resulted. So my only known relative with Celiac is a distant one who I've never met. I'm worried that the DNA test will turn out negative, or that things won't indicate that I have it. I'd be really upset if it turns out that even though gluten messes me up and I'm having the same experiences many of you are having (the withdrawal symptoms and the intense hunger when stopping gluten, for instance), I might turn out to have something else. I'd really hate that, considering the cure in development is for Celiac specifically...

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ravenwoodglass Mentor
ravenwoodglass
Posted

First of all I find this statement by your doctor ridiculous "many people feel better off gluten", sure they do....if their body has an issue with gluten.

In addition if you have been gluten-free for long enough to see improvement a one week challenge is going to do nothing. It should be at least 3 months.

The DNA test will be a waste of money if your doctor only tests for DQ2 or DQ8 and you happen to be someone who carries a different celaic related gene. The tests for D and A are a good idea but you should also have your iron, ferritin and B12 levels checked also. A DEXA bone scan would also be a good idea.

Why does he want to you do an elimination type diet and then fast? Did he give you a reason for this? What other tests is he wanting to do and what are they? An endo, if your gluten free that will be a false negative, a colonoscopy or what?

I might consider getting another opinion from another doctor before agreeing to the testing this one wants you to do.

CGally81 Enthusiast
CGally81
Posted
  • Author
First of all I find this statement by your doctor ridiculous "many people feel better off gluten", sure they do....if their body has an issue with gluten.

In addition if you have been gluten-free for long enough to see improvement a one week challenge is going to do nothing. It should be at least 3 months.

The DNA test will be a waste of money if your doctor only tests for DQ2 or DQ8 and you happen to be someone who carries a different celaic related gene. The tests for D and A are a good idea but you should also have your iron, ferritin and B12 levels checked also. A DEXA bone scan would also be a good idea.

Why does he want to you do an elimination type diet and then fast? Did he give you a reason for this? What other tests is he wanting to do and what are they? An endo, if your gluten free that will be a false negative, a colonoscopy or what?

I might consider getting another opinion from another doctor before agreeing to the testing this one wants you to do.

Since I balked at the idea of eating gluten for a while before taking the test, he decided to try tests to rule out other diseases. The idea is that the special diet and fast before the endoscopy is for the other tests he intends to do. I guess the idea is if I don't have __ and ___ and ____, then Celiac is the only thing left I could have.

For the blood test, it says this:

Vitamin D and A level

Genetic testing - PT/PTT

HLA DQ2/DQ8

anti-tissue transglutame (can't quite make out what he wrote) antibody IgA

total IgA

Anti Endomysial (can't make out the last few letters of this word) antibody

That's what the blood test is for.

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