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I found this site a couple of weeks ago and it's great. It was suggested last month that I most likely have celiac disease. I tested highly positive on my blood work and was referred to a GI doc. I am going in tomorrow for an endoscopy. Since I am anemic and there is a history of colon cancer in my family (my grandfather) they want to do a colonoscopy too. I was really suprised when the doctor told me that celiac disease was most likely the problem. I had only heard of it when I was researching information on food intolerance. No one in my family has ever been diagnosed with this.

Looking back there were probably symptoms that I have had for quite a while that I have just brushed off. I have always been thin and I have had a lifelong tendency to be slightly anemic (now I'm really anemic). Back when I was a teenager and through my 20's (I'm 43 now) I occassionally would have episodes of intestinal pain that were unexplained. I couldn't seem to attribute these attacks to any specific thing I had consumed. The only time I ever did see a doc about it (back when I was in high school) he told me I probably just had gas and told me to take a teaspoon of Mylanta every day. What a jerk.

About 3 years ago I problems with diarreah for about 2 months. I went to a doctor who apparently was not tuned into the idea of celiac. Her only suggestion was that if I continued to have problems that I should see a GI. Well, I just started to mysteriously feel better a few weeks afterward, so I was just convinced that it was the stress that I was under at that time.

I don't always have obvious symptoms like diarreah but that is what finally drove me to believe that I had a problem and that it wasn't just "all in my head". I had been having chronic problems since February that seemed to let up once in a while. I finally couldn't take it anymore and was able to see a different doctor. She seemed to be tipped off right away from taking my history and ordered the antibody panel. When she called me with the results I got off the phone and cried. It was such a relief to have someone tell me "YES there is something real going on with you!! You aren't nuts!!"

Now that I have learned more while I have been waiting to get in for this biopsy I am convinced that the results will be positive. I also suspect that my 14 year old daughter is too and will discuss it with her when I take my daughter in for a physical next week. I'm wondering if my other two kids should be screened too even though don't have symptoms.



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Welcome Peg. Definitely have your kids tested. If they are gluten intolerant, you are sparing them years of damage by getting them tested now and on the gluten-free diet rather than waiting until they have so many symptoms that they are in agony. That is if they have it. Guess you won't know until they are tested though. Best wishes to you and your family. All the celiacs here are awesome and so helpful.



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ALL first-degree relatives should be tested -- parents, kids, and siblings. All mine were and my 70-year-old father came back highly positive despite only minor symptoms.

From what you've described, you have celiac, no matter what the biopsy says. With highly positive tests and symptoms, it's nearly a 100 percent sure thing even without a biopsy.

Sometimes biopsies come back negative either because they didn't take enough samples or because you quit eating gluten (did you?). The ultimate proof after the biopsy is to go gluten-free and see if you improve.



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    • Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better. 
    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
    • In reflex testing they look at a result and decide if the next test is needed.  Another example, some labs only do EMA if the Ttg is positive.
    • Her blood panel is POSITIVE!!!! She's celiac! I don't know what in the world the GI is thinking. That's crazy! The GI obviously doesn't really know celiac. The constipation is tripping her up but celiacs can be constipated as much as they can go the other way and more than 50% of dx'd celiacs presented with NO GI issues. Keep her eating gluten until you get the results of the endoscopic biopsies.
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