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Is It Celiac Or Something Else?


acemommy

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acemommy Newbie
: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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lovegrov Collaborator

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

dbuhl79 Contributor

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?

lovegrov Collaborator

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

richard

stargirl Apprentice

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.

dbuhl79 Contributor

Richard/Stargirl,

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

Dana

acemommy Newbie
: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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tarnalberry Community Regular

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.

  • 2 weeks later...
acemommy Newbie

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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      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
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      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
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      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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