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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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    • Today was the big day when I went to the GI and this is the first time I have felt heard and taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a disc with records to me, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten. He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
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