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Is It Celiac Or Something Else?
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9 posts in this topic

:unsure: I had the celiac panel done a few months ago and the results were Gliadin AB IGA negative <20 Gliadin AB IGG 35 >30 positive and endomysium AB W/RFX Endomysial AB IGA negative. I have gone thru a lot this year. I had surgery for breast cancer in May, radiation thru August 3 and then started the gluten-free diet. They said I did not need to have a biopsy, but now I wonder. I do not feel much better- I have been losing weight, no appetite, have high cortisol levels, and tired but don't sleep well. It is hard to do anything and I take xanax to stay calm. I am seeing my doctor today to see if I can still see a gastroentologist even though I have been on the diet a couple months, though I know I make some mistakes. Any help would be appreciated. Thanks.
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Of course I can't tell you from here whether it's celiac, but if you've been gluten-free for just two months AND you know you've made mistakes during that time, I'm not surprised you haven't felt any improvement, even if you do have celiac. Two months isn't much time and some people feel bad for a week or longer after every mistake.

richard

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I've got a question. I went gluten free, felt 100% better. Yet understood to have the biopsy's you had to be consuming gluten. Now that I'm consuming it again for a week, I've had no major upsets. Does this mean I dont have celiac disease?

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Plenty of people who have celiac can eat gluten with no obvious symptoms. Your lack of a reaction means nothing.

richard

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Also, after only eating gluten again for a week may not be enough consumption to make your test results accurate. I believe the official standing on the biopsy is that you must consume gluten for 3 to 6 months prior.

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Richard/Stargirl,

Thanks. Whatever this digestive issue is, it has me feeling like I'll lose my mind. This website is great!

Dana

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:huh: Hi! Thanks for the replies. I just got my son's test back and before, they said it was okay, but now they said his IGG AB was 51. So it was higher than mine. How accurate is the test and could it be something besides celiac? Just cuirious. I go to a gastroentologist Wednesday. I did not realize how strict the diet is, I guess. I did not know one little bit of gluten could cause so many problems. Thanks.
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Don't forget that normal IgA's don't tell you a thing if you don't also have a total IgA test to find out if you're IgA deficient in general.

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Hi. I went to a gastroenterologist yesterday. He also wants to do a biopsy and since I have been on the diet a couple months, i wonder if anything will show up. i have been feeling so lousy lately. Also, I got a copy of my son's labs: Ttg=1 <20 negative, IGG AB 51 <20 negative and IGA AB 4 <20 negative. I asked the doctor about him going on the diet and see said I could try it for 6 months, but the standard test is the biopsy. I think I need to go to one who specializes in celiac. I felt like I know more than him because of my researching. My son has had two inner ear infections this year, is tired, and dizzy once in awhile. He does get heartburn too and I just think I should try the diet. Anyone have any suggestions? If you have IGG antibodies you are sensitive to gluten, right?

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Going gluten free may be beneficial if you're among the roughly 10 percent of people who suffer from celiac disease, a genetic immune disorder, ... View the full article
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