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Celiacmama83

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About Celiacmama83

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    Spending time with my four beautiful kids and wonderful husband. Gardening, Cooking, Cleaning, and watching movies
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    Helena, MT

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  1. I've never heard of a positive DGP IgA being caused by anything other than celiac. I find it surprising that it's specificity is 93-96%, I expected it to be higher.... But with those numbers you have a bout a 5% chance that your positive test was caused by something else. If you have no celiac symptoms, and do not experience an improvement of your symptoms on the gluten-free diet, then it is possible you are one of the 5% who has something else. Chances are good it's celiac though.   :(

     

    A biopsy is not necessary if you are unable to complete a gluten challenge.  Most doctors won't make you torture yourself with gluten if it's really hard on you. What has the doctor said about skipping the biopsy?

     

    Sometimes doctors want all the stars, moons, and planets to align before they will give a diagnosis. If they won't diagnose you, and won't help you with whatever else they think is wrong, I think you should move ahead and start treating yourself for celiac. You might want to have nutrients tested as celiacs are often low in iron, ferritin, potassium, calcium, D, B12, and zinc.  You might want to check out your thyroid (TSH, Free T4 and Free T3) as many celiacs have thyroid issues.

     

    Best wishes.

    I've had a lot of blood work and nothing is coming up abnormal. I'm slightly anemic and my potassium is low, but other than that the doc said everything is functioning the way it should be. They just couldn't figure out why I had a severe rash and they might not ever know. Same with an allergic reaction I had a few months ago. Its just very scary. I do believe I have Celiac because 90% of my problems went away after going gluten-free, but new things have developed and that is what scares me. I'm so afraid of cancer and lupus and even RA, but my doctor doesn't think I have any of those :) Lets just hope he's right. Thank you so much for your input :)


  2. I am wondering if anyone that understands the blood test to chime in. I had one positive test and it was the DGP IGA. Everything else was negative. I can't seem to find an answer anywhere. I just want to know if I need to ask my doctor to test me for some other disease. I am gluten free and have been for a few months, but lately I have had some really weird issues pop up and wasn't sure If its Celiac related or some undiagnosed issue. I'm so scared and I can't seem to get a doctor to help me. I'm pretty anemic and the doctors can't figure out why. I haven't had gluten since being diagnosed through blood work and I'm very careful when eating. I had a bad petechial rash pop up a few days ago and the doctors still couldn't figure out why it happened. I contacted the University of Chicago and they said that my results don't support a diagnosis of Celiac since everything else was negative, but my Doctor said that I have it since that the DGP IGA is very good. So confused and so over thinking I have something else, but can't seem to get a straight answer from anyone. I did not have a biopsy and went gluten free after my doc told me I was positive. I didn't know anything about Celiac disease and the importance of the biopsy. I'm too afraid to eat gluten just to get a positive biopsy :(


  3. Hi Celiacmama83

     

    Low Iron along with other minerals and vitamins is very common in Celiac Disease.  With celiac disease we don't absorb nutrients properly thus are deficient -- I was anemic my entire life...other vits and mins were just low until the later years pre diagnosis.

     

    Hang in there -- time will help you become comfortable with your diagnosis without biopsy.  Should symptoms continue beyond the first six months to a year...then it may be time to take a look -- even without introducing gluten.

     

    edited to add:

     

    How long have you been gluten-free?  Although the antibodies drop quickly upon removal of gluten -- the endoscopy can still show damage for quite some time -- it is better to have it done before removal, but after is not without merit.

    I have been gluten-free for three months. I recently had my blood checked because of a petechial rash on my legs and they said my iron and potassium are still low, even being on a gluten-free diet. I thought that would go away :/ I also contacted the Celiac Center of Chicago to see if I could get a care package since my doctor said I definitely have Celiac. They asked for my blood work, I sent it and they came back saying that my test doesn't  support a Celiac diagnosis. My doctor said that the test that came back positive is very good. I'm just so confused and tired of all of this. I wish they would have done the biopsy because I'm still having tummy troubles, but not as severe as before. That is why I was thinking it might be something else. The ER doc said that I might have something mimicking Celiac?? I don't know what else to do. I'm going to continue the diet and hope everything will subside. I just keep having all this other stuff pop up now and its terrifying. Thanks for listening to me!!!


  4. I had the same test come back positive and everything else was normal. My doctor also had me go gluten-free and said a biopsy wasn't necessary and she was sure that I have Celiac. I am torn though. Sometimes I have no symptoms at all and other days I feel terrible. I'm sure this is normal in the first few months. I really wish she would have done the biopsy for piece of mind, but I'm to afraid to eat gluten to get a positive biopsy :/ I'm also afraid it might be something else, but all of my other blood panels are coming up normal. The only thing that they noticed was that I am anemic and low on potassium. Do you suffer from that to??


  5. The DGP IgA is a very good test for detecting celiac disease. It is very specific to celiac (meaning very few other things can cause a positive test besides celiac disease). This report, on pages 11 and12 discus the tests: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

    Very few celiacs are positive on all tests, that's why they run so many. The total IgA is a control test to makes sure the other IgA based tests will be valid.

    Give yourself longer than a month to feel better. Many ofus felt worse before we felt better. It can take a few months to years for some symptoms to go. Patience is important, but I do hope you feel better soon.

    Welcome to the board.

    Thank you so much!!! I'm happy I found this group :)


  6. I was just tested for Wheat allergy and I should have my results in two weeks. I accidently ingested wheat and my eyes became swollen and I broke out in hives. My doctor said that it probably wasn't wheat, but maybe my makeup. I've been using the same makeup for years and it happens to be gluten-free. I don't know what else it could have been. We will see in a few weeks what is causing this reaction. It was pretty scary and hoping it doesn't happen again. I have never once had an issue, but once I went gluten-free I have become super sensitive to a lot of different things. I'm so nervous, I don't even want to eat :(


  7. Here are my results

     

    Deamidated Glaidin AB IgG - < 0.4 Normal

    Deamidated Gliaidin AB IgA- 18.0 High

    Anti-Human Tiss Transglut IGA -0.5 Normal

    Anti-Endomysial Iga Ifa- Negative

    Total Iga by Neph- 127

     

    I did not have the biopsy, she said to start eating gluten-free and come back in a month if I don't feel better :/