Ok So Should I Get More Testing?

[Adelle]

Ok so I've been gluten-free for a month now and I'm feelin great. I had a blood test done (after I'd been gluten free for about a week). My doc said that I have gluten antibodies and I should continue the diet. I could go find a GI, get the biopsy etc if I "wanted". My doc isn't the best, but he's my 10th (not including sleep docs for my sleep apnea) in 6 years. I'm not ready to be poked and prodded again. Antibiotics make me very ill (I'm mildy-severely allergic to like ALL of them), I am severly allergic to nausea medications, and pain killers make me sick. Is the biopsy really worth it?? I'm NOT willing to go back to eating gluten for ANYTHING!!!! I took a vitamin containing gluten last week and was in bed all day with migranes, nausea, joint pain, the whole bit. I'll never go back to that. So I guess what I'm saying is, is it that important to have the celiac disease diagnosis or can I just not eat gluten?

If there is a serious reason for the biopsy let me know, I'll consider it. But I already owe $1,500 in medical bills (we are living at the poverty level currently) and I'll probably have to pay for the biopsy myself. Oh man..........

[Guest ~jules~]

Hey adelle, my opinion is if you feel better not eating it don't eat it. We've only had our medical for almost 2 years now, we went without it for almost 3, I know the stress of medical bills piling up. Its really hard. The opinion on the endo is going to be really varied I can already see. Personally if my labs came back elevated, I had gone gluten free, and started to feel better I wouldn't go for the endo. if it would put me in the hole more. Hey did you go to the support group? How did that go, I'm thinking about going to the next meeting.

[Ursa Major]

Adelle, I personally don't see any good reason for a biopsy. Your bloodwork was positive, you're having a fantastic response to the diet, what other evidence would you need? Besides the fact that in order to have a positive biopsy you'd have to go back to eating a lot of gluten for at least six months, making yourself very ill in the process.

Besides, you don't need anybody's permission to eat gluten-free, it is your choice. You obviously have a great supporter in your husband, be glad. So, I say, don't bother with a biopsy.

[Adelle]

The meeting was purty good. Next month is some guest speaker.

[Nooner]

Hi Adelle,

I voted "NO" on the whole biopsy issue. I had a negative blood test from my (former) GP, I tried going gluten free and had positive results, and I did the Enterolab gluten sensitivity panel on my own. I only went to a GI because I heard about one in my area that accepted Enterolab, and was knowledgable about celiac. I went to him with a description of my history, dietary response and my lab results, and he diagnosed me on the spot. But if he had suggested a biopsy, my answer would have been "heck no." Or something like that.

It seems to me that the result is the same, gluten free for life, whether they stick a tube down my throat or not. Why should I put myself through a risky, invasive procedure?

My GI does want me to get bloodwork done for diabetes and thyroid to have as a baseline, because he says those ailments tend to be common among celiacs. He also wants me to have a DEXA bone scan in case my bones are weak from years of malabsorbtion. I'm 37, so I would never have thought to do that on my own. My GI referred me to an internist locally that works with a lot of celiacs, so she is my new primary care physician.

So for me, going to the GI was good, but only because I lucked out and got a good one. As you know from reading the boards, doctors seem to be a crap-shoot. And your doc, while you don't think he's the best, at least is smart enough to read the test and tell you how to fix it. He might be willing to order other tests (thyroid, diabetes, etc) if you really want them.

~Li

[CarlaB]

With positive antibodies and positive dietary response, you have your proof. I wouldn't bother even if it was covered by insurance!!

[Adelle]

I'm so glad ya'll agree!! My doc has already check thyroid, diabetes etc. I've never been checked for lyme disease, but I am like 99.99% sure ticks don't live in the willamette valley. Never heard of them living here. Anyway, I'm 22, so my insurance won't cover a bone scan for a few years.... But I take a daily multi+calcium. And I get a ton of random bloodwork done (check for anemia, elevated white blood cells etc).

Any other suggestions?? Thanx a ton! U guys rock!