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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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    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
    • AdrienJ, thank you so much! I dream of traveling more one day. I have spondylitis too. I'm so glad that a gluten free and casein free diet is helping you feel your best!
    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
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