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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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    • Couldn't have said it better!  
    • If you are going for an endoscopy, then please ask for a celiac antibodies COMPLETE panel.  This will help you determine if you have been diet compliant (zapped by hidden sources of gluten or accidental cross contamination) and if your doctor misses the (possible) damaged areas during the procedure.    That way you can rule out celiac disease and THEN worry about the possibility of other AI issues.   I did this last summer.  I got really sick.  My GI thought SIBO right off the bat.  But I asked just to be tested for celiac disease.  Sure enough, I had elevated antibodies.  No need to test for SIBO or anything else at that point.  I just waited a few months for symptoms to subside.   Good Luck to you!  
    • That's good Megan, that you were tested.  Many people have the genes, but only some develop the disease.  Your doctor is right about celiac often appearing after some kind of physical stress or illness. The tricky thing about eliminating one food is that you body may be reacting to multiple foods.  So not getting better could mean you just eliminated one problem instead of 3. It's not unusual to have digestion issues for quite a while after going gluten-free.  Our guts are damaged and that damage has to heal.  But it can't heal until the immune system stops it's attack.  The immune system attack/reaction can keep going for weeks to months.  So it can be a slow recovery.  Often people report getting better and then getting worse and going back and forth on symptoms. What doesn't help is that our bacteria in our guts can get really screwed up by the disease process.  We can't properly digest things so there is more undigested food for bacteria to thrive on.  Avoiding sugars and carbs can help with that issue. Here are some starting the gluten-free diet tips for the first 6 months.  Some of these you have already taken care of: Get tested before starting the gluten-free diet.
      Get your vitamin/mineral levels tested also.
      Don't eat in restaurants
      Eat only whole foods not processed foods.
      Eat only food you cook yourself, think simple foods, not gourmet meals.
      Take probiotics.
      Take gluten-free vitamins.
      Take digestive enzymes.
      Avoid dairy if it causes symptoms.
      Avoid sugars and starchy foods. They can cause bloating.
      Avoid alcohol.
      Watch out for cross contamination. Helpful threads: FAQ Celiac com Newbie Info 101
    • yes, I was tested for it. They said after stomach surgeries and other major things causing that much stress on your body you can become intolerant to gluten. It happened to my aunt as well who was in a horrible car accident. They said you can always carry the gene in your body and having that much stress on your body can start it.
    • A new study confirms a link between intestinal viral infections and celiac disease. View the full article
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