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Endomysial Test (ema)
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30 posts in this topic

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I don't know if they looked for internal bleeding....who would do that? I had a colonscopy which showed only slight diverticulosis. Nothing to even remove and send off for testing.

I know what you mean about the more doctors you see and getting more confused. My GI at least thought my antibody level was abnormal and so this started my search for answers about celiac disease. But the blood doc said in no way would you tell someone they could have celiac disease based on that alone. Well that sort of got me excited thinking the GI is mistaken but until the Celiac panel blood tests come back I won't know what's what!

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I would pose the question to your primary physician - whoever you consider that to be. May be your GP or other. Don't let them brush you off. Unexplained anemia can be a sign of either significant or slow, less significant internal bleeding. It should be investigated if all other possibilities have been exhausted. Claire

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My dd was also always anemic and I believe that it was directly related to her gluten sensitivity. Nothing was ever done about it and I was told her give her a vitamin and be sure she ate enough iron. This was a child who ate us out of house and home and then some because she was so starving and yet was vitamin deficient and malnourished to the point that her hair was/is falling out.

Drs. are on my hit list right now!!! We didn't get the menstrating line, obviously, but we just got some other BS because they obviously knew she was eating better than most children on this planet, yet was not absorbing the nutrients properly. They chose not to figure out why...

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Claire - well I don't know that I have celiac disease yet. I don't really have the gastro symptoms. But I'm going to ask my doctor to check for ulcers just in case. She's an internist but she's young and she doesn't seem to worry too much about what's causing my anemia. I want to change to another pcp but I can't do that in the middle of all these tests. One thing my doc will do is refer me to whoever I tell her to. Have to credit her for that.

e&j0304 - I'm right there with you on the doctors being on my hit list too. When the hemo doc stopped listening to me after he'd asked if I had 'D' or 'C' and I said no, I knew he wasn't going to be of help to me. At least he ordered the Celiac panel so I'm anxious to find out those results.

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    • Hi, you can try reporting your own post.  That should alert the site admin of your request.  I don't think they can delete your posts, but changing your user name may be possible.
    • Hi Pablito, Welcome to the forum! You are right, you should keep eating gluten  until the tests are all done.  The skin problems you describe ma be a condition only celiacs get.  The condition is called dermatitis herpetiformis (DH for short),  DH causes an itchy rash that is usually symetrical on the body.  You get the rash on both arms or legs etc.  It makes little blisters on the skin.  They are caused by IgA antibodies in the skin.  There i a test for DH where they take a small skin sample (biopsy) from the skin next to a blister and check it for IgA antibodies.   If they find DH, then you have celiac disease.  The 2 conditions are never separate.  there is a section of this forum dedicated to dermatitis herpetiformis with lots more information. The usual diagnostic process is to do a celiac antibodies blood test first, and then an endoscopy to test for damage to the gut lining.  But with DH, it is better to get the skin biopsy done instead of the endoscopy. Celiac disease is passed on in genes, so your children should be tested also if you are diagnosed.
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    • It is best not to try and do this on your own. Talk to your allergist. Not all will deal with food intolerances but if yours doesn't find one who will.  Mine had me fill out a very detailed diet questionaire and tested for true allergies before he gave me my starting point. I will admit I wasn't real happy with my starting point since none of my usual foods were on it. He said that I was most likely to react to foods I ate the most so most of the 5 I either rarely ate or didn't really like. The prescribed starting point he formulated was designed to make sure I had adaquate nutrition and enough calories.   It took about 2 weeks before a lot of my tummy issues resolved and I was then able to start adding foods in one at a time for a week before moving on to the next.  He said food intolerance reactions can take up to a week to show up so I had to be sure it was a full week between food additions. I did have to call three offices before I found a doctor who could do the formulation of the diet but this guy truely saved my life. Out of all the doctors I had seen, including specialists in big hospitals, he was the one responsible for finally realizing I was celiac. He of course referred me back to my clueless GI doctor who confirmed the diagnosis by almost killing me with a gluten challenge. I should note that some of my intolerance (not gluten of course) did resolve after I had healed. Even dairy which I hadn't been able to have for years! I hope you can get some answers and are able to heal soon.
    • I'm 43 years old. I'm married and have two teen daughters. After all these years it was one of my daughters who tonight said to me: "you probably have Celiac disease" after hearing my wife and I talking about all the pimples I always get on my arms. I never heard of the disease but I have heard about a lot of people having gluten allergies and didn't know they were the same thing. So I started looking it up on the internet. Turns out I have had all the symptoms all my life and no one has ever said anything about it possibly being Celiac disease. When I was a kid my doctor gave me prescriptions to antibacterial soaps to use for the arm pimples. Hibitane I think was one of them. And I've always had swollen looking ankles as long as I can remember. All my life people have noticed it. As a kid and teen I played lot's of sports and have broken my ankles and sprained them so my mom and I brushed it off at that and so did my family doctor when I was young.  But I always thought it was weird that the swelling continued all these years.  I have had a bloated feeling stomach all my life too and chronic diarrhea. My stomach is always hard and swollen feeling. Not ever knowing what that stuff was related too so I have never mentioned the bloat or diarrhea to a doctor. Just kind of embarrassing I guess. As my wife and I were reading about Celiac Disease on the internet together tonight she pointed out to me that that's probably why these symptoms almost all went away when I did a very low carb diet for about a year straight to lose weight a couple years ago. I had solid bowel movements, no bloat, ankle swelling went down but I thought the improvements were from weight loss and just eating healthier . But perhaps in reality it probably had a lot more to do with not eating all the wheat products/gluten products. So tomorrow I will be seeing my doctor to talk to him about it and to ask for the blood tests. I have read that I should continue eating gluten though until my testing is done. So that is crappy but I guess it's better to know for sure. Something else I think I should point out too is that I get headaches quite a bit after having big meals. Now I am thinking that may have something to do with the gluten too. I have read that some people with Celiac also get headaches with the other symptoms. It's great to see there is a forum like this to help people out with these issues. If I test positive for Celiac I will for sure be following this forum closely for advice and diet/nutrition help.
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