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Dr. Stunned By My Results :)
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I have rheumatoid arthritis and have to have my blood drawn every six weeks to check for liver toxicity from the drugs. In 8 years they've always come back normal. In December they came back elevated. I stopped meds and mid-January was retested, they more than doubled! I had an ultrasound (normal) and other blood work done (normal). I did some research on my own and found that high liver enzymes can be the result of celiac. I had more tests done and then went 100% gluten free for a week. Dr. called with results. Liver tests were not only back to normal but were on the low side of normal! He said he really didn't expect the celiac to be the cause but it is! He was totally surprised, said that it's not a common "symptom" and he wasn't expecting positive results from it. Now, I stay 100% gluten free, and then I came home, put dinner in the crockpot and THEN realized the soup I used has wheat flour ..... *sigh*.... husband will have that, I will fix myself something different, lol! Old habits are going to be hard to break!

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I am so glad to hear your liver miraculously "cured" itself in the absence of gluten. Unfortunately, rheumatologists are very slow to pick up the celiac connection. My rheumy here is on board; the one in Nevada totally pooh-poohed the idea, said he had never had a rheumatology patient with celiac. I looked him in the eye and asked him how many he had tested :ph34r: -- he said "None", so I asked him how he knew, and then I told him he could no longer say that because he had me :D

I was just thinking this morning of what a poster said yesterday about a comment, "Oh no, not another internet doctor!" and it occurred to me that without the internet so many of us would at least be undiagnosed, at the worst dead, without the internet, because we are the only ones interested enough in our bodies to do the research. Most of our doctors are content with what they already know, and use the excuse of "I was in medical school 40 years ago" to cover up the fact that they don't keep current, even in their own field.

Don't worry about those momentary lapses - they happen to the best of us. At least you realized it before you ate it. Just the other day I ordered a decaf coffee and a gluten free snack. My coffee arrived before the snack and came with an itsy bitsy cookie on the spoon. It got as far as my teeth and bitten in half before the lightbulb stage - here I had made sure my coffee was decaf and was eating a gluten cookie - the barista did not know I had ordered gluten free food!! :)

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You'd be surprised how damaging gluten can be.

I remember those last few weeks on gluten. I was sicker than a dog! Once i went off of it, the vomiting completely stopped and so did the "D". I was so ill during that time that i dropped about 40 lbs in little over a month. That is so NOT normal. I remember during that time i'd eat simple things, some plain tossed salad, water, lunchmeat, plain pasta (nothing added to it), sometimes milk. I'd also do waffles sometimes too. But one day i wanted to try some rasin bran. Yeah, that didn't go well. Eventually the plain pasta got to me as well (which really freaked me out because i ate a couple of bites and my stomach starated rolling and my mouth watering like mad).

Gluten eaters can keep their gluten.

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That's great that your liver responded so well... and so quickly!! I hope you continue to feel better. :)

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That's good news on the liver enzymes going down. But your doc is a little out of touch. Elevated liver enzymes are fairly common with celiac disease from my understanding. And they tend to return to normal after starting the gluten-free diet.

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I think my biggest struggle will be my husband, he's very much a "a little bit won't hurt you" type of person. I don't think he understands the seriousness of celiac and that a little bit WILL hurt me. So glad to have answers now.

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    • Thanks for the replies so far everyone, much appreciated Great, another doctor gets it wrong, how many more times can they make a mess of this diagnosis process?! Bloating had gone down a bit in these first few days of cutting the gluten so I guess expect that to come back. It's one way to have a farewell tour of the gluten foods I guess - if a little or a lot makes no difference may as well go all-in... The doctors didn't diagnose this at all, Google did. If I trusted in the health professionals I'd be blaming the symptoms all on stress and having counselling for it whilst the fire raged on inside me due to a clinical condition they'd missed. Just glad one of doctors agreed to run the test on second time of asking to keep me quiet as much as anything. Believe me I've read that newbie thread multiple times, as well as numerous others around the web. Been doing nothing but since Tuesday when the blood test results came back and each time I go into the comments sections a little bit more of me gives up inside. Seems so many don't ever heal and so many associated complications too. The reality looks bleak apart from a lucky few it seems. In the nicest possible way the vegetarian choice is non-negotiable, it's a core part of what I believe and the thought of eating any form of animal \ fish flesh would make me physically sick (sorry meat eaters) so will have to find some way around it, how I don't know yet. Perhaps lots of this... http://www.pulsin.co.uk/pea-protein-isolate.html The cooking bit is a concern as it's something none of us do well at home, adds to the feeling of being completely lost right now. I kick myself for the decision that lead to the stress as I could've avoided all this. The only thing I can cling onto there is that I was having some pains in the side before that time which I blamed on a muscle strain... maybe that was the early stages, in which case I could feel a bit better knowing it had just come on gradually. With the biopsy and gluten from what I read the villi take a long time to heal up so they'd still see that. With the blood test result as definitive as it was surely the disease is pretty much confirmed? How can it heal enough for non eating gluten to throw a biopsy result yet on the flip side take over a year to heal (that sounds like the best case scenario time-wise from what I've read). Not suggesting anyone is wrong for one second but need to understand how that works with what's going on inside to make any sense of this situation.
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