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Maybe Maybe Not I Don't Know
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Hi I'm new my big question is do I or dont I. I had big blood work done in sept. like 5,000$ in one bill this is a test for all kinds of things allergies Lyme ciliac and many others. In oct my results were back I have a wheat allergy and my TTG Igg was a 13 and my TTG Iga was a 14 the range is o-7 so he said I have ciliac and a wheat allergy. Stay away from wheat. That was it pay me now and bye. I have not had any gluten for the 3 months . He tested again just after Christmas I went yesterday. I have no wheat allergy now. duh it's from no wheat in my diet right? I also have been low vtiman D for years now 50,000 once per week for at least 3 years .and low fish oil 4 per day now found that out from another big $ cardiac blood work. And also low calcium now also two pills per day. Now he says I'm intolerant I have had symtoms for years 4 years ago went had endo and colonoscopy he said no ciliac. Told my doc I had been tested and they said no back then. My doc now said test is much more sensitive now. I think he can't keep his patients straight to many on his plate. I don't know I am or I'm not I have had to find everything out on my own no help from my doc . Thanks to people like you and the Internet I'm doing good with the gluten free.

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Hi Mickey, and welcome. Glad to hear you have been reading, if not posting before.

If your doctor now says you are not celiac because you no longer test positive for it because you stopped eating gluten, he is an idjit. That is what is supposed to happen when you go gluten free -- your numbers go down because you stop making antibodies to things that are not present :D Good for you! You have done a good job! (I hope I am reading your post correctly) As for wheat allergy? Did he do the skin prick test again? Or how did he test for that? Did he retest your vitamin D and calcium?

I think it is pretty clear from your October results that you ARE celiac. Don't let anyone tell you you are not.

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I have a wheat allergy, and after a year with no wheat I tested negative for a wheat allergy. They told me I could eat wheat again! So I did, I missed it alot. My symptoms became soo extreme. I stopped eating wheat again and asked about celiac, at the time I didn't understand much about it. I tested negative, but I am sure that is because I had already stopped eating wheat. I decided to go gluten free on my own about two years ago, and I would never go back, whether it is just an allergy or celiac, gluten is not for me. They did do an E95 basic food panel on me (which I believe is igg testing-like a delayed reaction) as well and my results were pretty obvious.

wheat--significant allergy-- 528 mine was 1227

gluten--significant allergy-- 363 mine was 1445

gliadin--significant allergy-- 594 mine was 1519

My dr. didn't really explain alot so I decided to become a google dr...

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The allergy test was all blood it was for foods molds trees Lyme ciliac . Vit D was good in DEC

Fish oil just found out in DEC. calcium just found out DEC. I asked if vit levels were low because ciliac he said

He said no poor diet I'm not the only one a lot of people are low. Also cholesterol is on the low side like

159. He retested me for fish oil and calcium on wed. The blood work that was done one went to Virginia

And the other New Jersey they only take what insurance pays if the insurance doesn't pay you owe nothing

One is cardiac panel and the other is the allergy and other things. They take like a month for the results

to come back. One is like 5,000$ and the other 6,000 - 7,000 my doc has contract with them

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Lots of people are low in vitamin D for several reasons: they use sunscreen all the time; they spend too much time in front of the computer and don't go out in the sun; they live in the northern latitudes where the suns rays are too slanted to create vitamin D; they don't get enough vitamin D from their foods because they eat the wrong foods; they don't get enough vitamin D from their foods because they have celiac disease. We don't know about any of the others, but we know from your September test results that you tested positive for celiac disease.

Lots of people also do not get enough of the Omega-3 (fish oil) fatty acids, EPA and DHA. You could probably say this about the entire American population because we eat too much of the Omega-6's, and these need to be kept in balance with the 3's.

Is your doctor a medical doctor, a chiropractor or a naturopath, or something else? Did he do the tests in September which came back positive for celiac, and if so what did he tell you about them then? Did he recommend a biopsy of your small intestine? Did he recommend you eat a gluten free diet?

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    • 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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    • 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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