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Bethinjapan

Got Results Back Today

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I had my doctor appt. today to get the results of the blood tests and endoscopy. I've been eagerly counting down to this day expecting to learn something! Anything that could promise hope of feeling better! What a let down! She told me they were running the celiac panel and it would be sent to the States for evaluation, but it turns out, they didn't do that afterall. They only did the Anti Tissue transglutaminase IgA antibody at a local lab, which came back normal ( 3 in a range of <5 ) . While my pill cam showed lots of duodenal irritation a couple months ago, the endoscopy was perfectly clean. (I can say without a doubt that whoever reviewed the biopsies here has never seen celiac before, since it doesn't exist here. Whether that makes a difference or not, who knows!) My thyroid testing also came back fine, along with everything else that was tested for in those seven vials of blood.

She then, somewhat appologetically, told me she doesn't know what is causing my weight loss (22 pounds now in the last few months...I could stand to loose that much again and weight loss has never been easy for me.), but doesn't think there's anything to worry about at this time. I said, "Okay...Even though I'm having diarrhea every day??" She said daily diarrhea is okay as long as it's just one to three times a day and not like ten times a day and interfering with life. I wanted to cry right there and beg her to search further for the cause of my pain and tell her diarrhea might be normal for some people, but up until a couple years ago, it wasn't for me! But that was it. She didn't even see the need to do a colonoscopy.

So now what? I've been gluten free since the day these tests were taken just over three weeks ago. My stomach pain is much better, but the diarrhea is possibly worse. Was definitely worse at first, but still very much at least a daily part of my life. Joint pain and other symptoms haven't changed. So, I don't know what to conclude. Either the gluten free diet isn't working, or I'm still getting some cross contamination despite being very careful, or there are other issues/intolerances involved, or it just simply hasn't been long enough. My hubby has been very supportive and thinks I should stay gluten free for another month and see if it helps. He talked me out of stopping for pizza on the way home to wash away my tears!! Ha! I just feel very afraid that I am not going to find a solution to the pain, fatigue, etc. and I'm not functioning very well in my roles of wife, HOMESCHOOL MOMMY, etc etc. right now as a result of what I'm going through physically. I've been reading about the SCDiet, so would especially appreciate advice from anyone who is more knowledgeable or experienced with that, as much as I DON'T want to have to do that!

Thanks for listening! Sorry for the rant! This forum has already been a huge help, and I'm so thankful that I can come here for advice about this!

Beth

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...I said, "Okay...Even though I'm having diarrhea every day??" She said daily diarrhea is okay as long as it's just one to three times a day and not like ten times a day and interfering with life. I wanted to cry right there and beg her to search further for the cause of my pain and tell her diarrhea might be normal for some people, but up until a couple years ago, it wasn't for me! ...

Beth

Maybe it's just me, but my diarrhea ended when I gave up dairy and fruit. I think it was the fruit causing the problem (more specifically, fruit juice at every meal). I also added vast quantities of steamed vegetables to every meal, which probably also helped, though I've since dialed that back somewhat. You may want to look up fructose malabsorption on the Internet.

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Thanks for the reply! That very well might be it! It's worth a try!! :)

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False negatives are unfortunately all to common. Sometimes our body gives us the answer that testing cannot. Since you are done with the testing now is the time to give the diet a good strict try.

If you are still consuming dairy you should delete it from your diet for a while as the same area's damaged by celiac or gluten intolerance are the areas responsible for creating the enzyme that is need to digest dairy.

It can also take a while to figure out all the places where gluten can be an issue. Things like cross contamination in production, natural flavors in foods, restaurants can be tough as there is a lot to watch out for and not all things that seem like they should be gluten-free are when prepared in a gluten filled kitchen.

I agree with your husband, keep up the diet for a bit longer. Also if he is a gluten eater or drinker do make sure that he brushes his teeth before you do any kissing.

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Sorry to hear about your troubles. Just wanted to say that many times a gluten problem goes along with a dairy problem so maybe you are dairy intolerance as well.? BTW, that is so awful that because someone is not wasting away (yet) that the doctors said it's okay to lose weight without trying. Also, it is very hard at first to make sure you aren't getting cross contaminated (I had to learn things like gluten doesn't come out of wooden utensils so don't use even if clean, get a new gluten-free only toaster) so maybe double check that. HTH!

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