I Need Advise

[cavernio]

So, I FINALLY got an appointment for an endoscopy and biopsy and colonoscopy, just today; 2 weeks AFTER I've given up on eating gluten because I had been eating it for 6 weeks and I had yet to have an appointment scheduled. I stopped eating gluten because even though I thought I hadn't noticed much difference on vs off gluten, I did notice when I went back on it. I was bloated again, my skin got bad, and the worst thing, my neuropathy got bad. Energy levels...well, I may have been in a better mood generally when off gluten, but maybe not too. I know I was ecstatic to just find out what was wrong with me, and that lasted at least a couple weeks.

I had decided to opt for the endoscopy because when I first went gluten-free, I still had an awful pain in my left abdomen. It has since gone away with taking metamucil for a week, however I'm still very unsure if that was indicative of the reason for it or not. (I eat plenty of fruits and veggies, so lots of fibre, and it had been an almost constant pain for, oh, over a year at least.)

I don't have my actual test results, I didn't ask for them, but the GI said they were high, not borderline, and that he was 90% sure I had celiac disease. (Of course, when I asked him about what else might cause it to be so high, he didn't have an answer for me besides 'lab mixup'...10% chance of my results being mixed up? I don't think so. Makes me question the accuracy of biopsies. There was an article I read where something like 40% of labs DON'T take 4 samples like they're supposed to, and compared to labs that DID, there was like 30% more diagnosis of celiac disease...'gold standard' my ass)

Soooooo...it's scheduled for June 17th, JUST enough time for me to be eating gluten and damage any healing I may have had these past 2 weeks, (and my nerve pain has almost disappeared). Regardless or not whether I eat gluten, I'll get the test done. But the question is, should I eat gluten for 4 weeks to verify that I do, in fact, have the disease? There's still a good chance I'd think, that I will still have intestinal damage after being gluten-free for 6 weeks.

And to complicate matters, I've been fasting for the past 4 days right now, because I wanted to get a jump-start on healing my intestines because I didn't think my biopsy was going to be scheduled any time soon. If I choose to not go back on gluten, do you think I should stop fasting to potentially avoid healing them quicker?

The doctor seemed to recommend that I have it done because I'm young, and he wanted to make sure that I wasn't giving myself an unnecessary diet to follow the rest of my life. And it made sense at the time, AND I wanted to check out that pain I still had at the time.

I guess me eating gluten doesn't affect the colonscopy part of it, so that's good.

A part of me wants really wants to binge on delicious bread again. But that's a dumb reason for going back on gluten, isn't it?

[pricklypear1971]

I suggest you try going back on gluten for the test. See what happens. You may not be able to do it...and that's that. If you do and can, well, you'll feel even more secure about the results.

[cavernio]

I just dunno how much I trust a biopsy in comparison to the bloodwork. If my biospy comes back negative, I'm still going to be gluten-free because I've realized I have improvement being gluten-free (although I wasn't sure of that earlier when I said I wanted one).

I'm Canadian so I don't have to worry about health insurance not covering me or something.

Hah, sounds like I'm answering my own question, but I guess I just don't feel right about saying I've changed my mind midway and having to tell the doctor that.

[pricklypear1971]

Honestly, if you have such strong positives, there's little doubt (especially with the results you've had gluten-free).

It's one of those things... If you're ever going to doubt it, try it (though since you went gluten-free for a while, then back on, there's a chance it could get wonky).

I wouldn't do it if you're going to be gluten-free for 6 weeks. At least, I wouldn't rely on the results for a Celiac dx.

Here's something to consider...what happens if you are off gluten and do the biopsy, biopsy is negative....what kind of dx will you get and will it matter to you and/or the doctors? So, I'd make a decision. Commit to doing it (if you can after trying) or cancel the Celiac portion.

Just my opinion. Doctors seem not to listen (or read) or write "Negative biopsy, positive blood, patient gluten-free for X weeks prior to biopsy so biopsy should be discounted". They just say "patient is negative for Celiac". Get my point?

[cavernio]

heh, my bf just said "the 'I think that doctors are jerks reason' is a good reason for you to eat the gluten", because I constantly b%$@# about doctors.

I hadn't considered that I might get subpar medical care FOR THE REST OF MY LIFE if the biopsy comes back negative. And I DO want the biopsy anyways, gluten-free or gluten-eating because I want to track my progress. But of course, me wanting to see if it for progress isn't necessarily what the doctors are going to use it for.

I'm pretty sure I'll be able to do it for 4 weeks, since I don't get awful diarrhea or cramps from gluten.

[pricklypear1971]

heh, my bf just said "the 'I think that doctors are jerks reason' is a good reason for you to eat the gluten", because I constantly b%$@# about doctors.

I hadn't considered that I might get subpar medical care FOR THE REST OF MY LIFE if the biopsy comes back negative. And I DO want the biopsy anyways, gluten-free or gluten-eating because I want to track my progress. But of course, me wanting to see if it for progress isn't necessarily what the doctors are going to use it for.

I'm pretty sure I'll be able to do it for 4 weeks, since I don't get awful diarrhea or cramps from gluten.

You do realize 4 weeks is still under the 2-3 month threshold they usually recommend, right?

I'm not trying to convince you not to do it. I'm just trying to make sure you have all the info.

[cavernio]

I was told by my GI that 4-6 weeks was all that was necessary which was why I was upset when after 6 weeks I hadn't heard anything. But yeah, reading some posts here just recently made me realize that, oh, he was just waiting 3 months like many people here have had to wait.

[pricklypear1971]

I was told by my GI that 4-6 weeks was all that was necessary which was why I was upset when after 6 weeks I hadn't heard anything. But yeah, reading some posts here just recently made me realize that, oh, he was just waiting 3 months like many people here have had to wait.

In the States most of Tge research centers say between 2-3 months. It varies, and I don't think there are any studies showing what is optimum.

[Marilyn R]

In that case, I think I'd also suggest going back on gluten for the four weeks.

I am undiagnosed and some of my physicians respect that, some have a roll your eyes attitude about it. I've wondered what would happen if I'm ever hospitalized. Will the dietary department take it seriously if I don't have the diagnosis? Enjoy some croissants, baklava, all of the stuff you really miss that aren't easy (or nearly impossible) to duplicate gluten-free. Visit the bakeries in town. I'd been gluten-free for six months by the time I consented to an upper and lower GI. It was still a comfort to know I didn't have any ulcers the GI ruled out other issues, like ulcers. He called me himself when he got the results and asked me to come to his office the next day at 12:00. We sat is his office and he told me the results were negative, but reviewed each of the symptoms I told him I'd been having on our initial visit and asked if that had improved. (There were about 15, I think, chronic D at the top of the list.

At the end of the visit, he told me he could not tell me I had celiac disease, but he wanted to make sure that I knew he recommended staying on the diet. He didn't charge me for the visit, had me come during his lunch hour. He said he didn't want to give me the results over the phone because he wanted to be sure I completely understood his line of thought.

Be prepared for another false negative even if you eat gluten for the next month. I think I started having an intolerance for six years before I eliminated it from my diet. I'm not young.

And if it becomes to much for you, you always have the option of opting out of the wheat.

You're lucky you live in Canada. In the U.S., most gastroenterologists schedule upper and lower GI's separately so they can optimize their revenue. (So two preps, two anesthesias, two more days of work.) I had the only guy in town that will perform both procedures on the same day. He's a great doc, I love him.

Good luck!

[cavernio]

Yes, I still want the endoscopy to rule out other things. (Before thinking of/considering celiac, I thought I might have a parasite(s), and when I took herbal Paragone pills, I saw white pieces in my poo that weren't there before.) So often internal problems go undiagnosed (in general, not just celiac or gastroentestinal), so the chance to have a camera inside my body to just visually see my intestines, to me, is something too good to pass up.

So that along with what pricklypear said, that I don't want to have doctors roll their eyes at me or worse, ignore it completely, would be awful.

I will ask for my results of my blood work too. I read a study (of course can't find it now, should have bookmarked) that said if the bloodwork is 5x higher than the standard, that a biopsy isn't necessary as 100% of people show positive biopsies. Just in case the biopsy comes back negative.

Thank you everyone! You've really helped me decide, and consider things I'd never thought about. I have already eaten gluten. Stomach not so good, but I think that's just me breaking my fast too quickly. I'll double-up on my gluten eating now too, 3 servings a day minimum! Now if I could just lose weight while eating this stupid gluten, I may even be happy with my choice.

I think I've had celiac for 12 or 13 years now. It's possible it's only been 5-6 though. 12 was the start of serious depression issues and all the stuff like fatigue, brain fog etc. that usually goes with depression. 5 was the start of bloating. Nerve pain is even more recent though.

[cavernio]

Oh there's downsides to the healthcare wanting to keep costs down though. Like the lab not doing all the tests the doctor orders for you because someone there 'feels it's unnecessary', or the fact that I haven't had a proper history taken, well, ever.