Symptoms Sound Familiar?

[quentin]

In 1992, I got hit by amoebic dysentry, lost 28 pounds, took metronidazole, put the weight back on, but have suffered a strange battery of symptoms ever since. These include: feeling feverish at night (no temperature), dry mouth, burping, inflamed small intestines, foul-smelling stool, tingling fingers, momentarily feeling uncoordinated. Noticable food intolerances were eggs, cane beet sugar, and red meat. I thought it was ME.

At the start of July 2008 my small intestines started to feel inflamed and I was burping a lot although I had no diarrhoea or weight loss. I went to the doctor. On 21 August 2008, a blood test for coeliac disease came out positive. All my other blood tests were fine (no anaemia and my liver was working OK). I'm now awaiting an endoscopy on 8 November to confirm the diagnosis.

I started a gluten free diet as soon as the blood test result was in. The most noticable change was feeling hungry most of the time. Psychologically, I also feel a bit more centered. However, my small intestines are fine for 10 days then become inflamed again for 10 days and so on, and I get discomfort in my left middle back. In other words, my guts haven't improved much and might even be a bit worse. This was despite changing to lactose-free milk. I recently ate out on two occasions - both times, roast chicken cooked in vegetable oil. I'm suspecting vegetable oil is the problem.

Do these symptoms and the difficulties with the gluten-free diet sound familiar to anyone?

[ShayFL]

Very familiar.

Eating out is like playing Russian Roulette. Marinades are notorious for having gluten in them. Foods that seem safe arent. You have to get used to asking LOTS of questions. Even calling ahead when you eat out. Even then you can get burned. It has happened to me despite my efforts. And with Celiac you really have to strive for 100% gluten-free or it doesnt work.

I'm now awaiting an endoscopy on 8 November to confirm the diagnosis.

I started a gluten free diet as soon as the blood test result was in.

You MUST be eating gluten and lots of it for a good 3 or so months for any chance of the biopsy being accurate. That biopsy you have planned will likely be NEG and they will say you do not have Celiac. And if you believe them and continue to eat gluten, not only will you live in misery, you will be setting yourself up for other autoimmune diseases and cancers.

So you can either go through with the biopsy knowing there is a HIGH chance of a FALSE NEGATIVE, reschedule it for 3 months later and eat tons of gluten for those 3 months so it will be accurate OR cancel the biopsy and keep healing yourself now by striving for 100% gluten-free.

Your blood says you have Celiac. It is up to you if you want the biopsy.

Make sure all of your lotions, toothpaste, haircare, etc. is gluten-free. You may have to email or call companies to find out. Get rid of old scratched teflon pans, old cutting boards, old wooden spoons, toaster, etc. They ALL can harbor hidden gluten.

[mhb]

Just FYI, I am reading Peter Green's book "Celiac Disease: A Hidden Epidemic", and in it he says you *can* do a biopsy within 6 months of going gluten-free - that it takes 6 mo. to a year for the intestine to heal. He is director of Columbia's Celiac research and treatment center and has focused on this for 15 years. There may be other professional opinions on this question. Frankly I think everyone's going to be different when it comes to how long it takes the intestine to heal, just as we are when it comes to how long it takes it to get damaged, or for symptoms to show. Certainly sooner the better for a biopsy given these unknowns. I went off gluten in early June and am considering the biopsy after what Green wrote, still within 6 months, but I'll probably do as much of a challenge as I can prior to it just to try for a positive test if in fact I have Celiac. I think Green wrote that no one knows for sure what is necessary in the way of a gluten challenge before the test, but in his experience, he's comfortable with four slices of wheat bread a day for 4 weeks - I *think* that was it. I don't have the book with me. Just be peaceful going into it that if you test negative you could still be Celiac. Green also says it's a myth that getting gluten on your skin can contribute to Celiac, unless you eat it somehow, like lipstick. I'm sure many here have experienced reactions from skin applications, but that could be more of an intolerance than Celiac, even if you have Celiac. For Celiac specific problems, it's required that the gluten come in direct contact with the intestines, which doesn't happen, Green says. But come to think of it, maybe leaky gut could let it in? "Bottom line": listen to your body and do what feels healthy for you.

[quentin]

I've also been reading on these forums that some people think an IGA endomysial blood test is unreliable. Well my consultant in Oxford, UK, claims it is 95% accurate! So I don't get why some people are saying this. In fact, I'm wondering what use is the endoscopy in that case - but maybe it can eliminate the more sinister diagnoses.

[mhb]

I've also been reading on these forums that some people think an IGA endomysial blood test is unreliable. Well my consultant in Oxford, UK, claims it is 95% accurate! So I don't get why some people are saying this. In fact, I'm wondering what use is the endoscopy in that case - but maybe it can eliminate the more sinister diagnoses.

I'd venture to guess that 10-20 years from now everything we think about gluten/celiac will look different from today, on the whole. Some of what we "know" now will be part of the picture, some things not. Part of me wonders why do "any" testing if I feel better. In the future it will all be so much more advanced, with fewer false negative and positive results, less uncertainty, clearer understanding. It all appears so fledgling right now. Meanwhile, I know I feel better. Maybe positive biopsy won't even be required for certain diagnosis. Maybe it will be some other marker that helps resolve all the confusing feedback re: test results, symptoms, no symptoms, blah blah ... We might look back at our state of "knowledge" today and laugh.