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Maybe Maybe Not I Don't Know

Mickey222222

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Mickey222222 Newbie
Mickey222222
Posted

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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mushroom Proficient
mushroom
Posted

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.

Happyw5 Explorer
Happyw5
Posted

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...

Mickey222222 Newbie
Mickey222222
Posted
  • Author

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

mushroom Proficient
mushroom
Posted

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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  • Posts

    • Scott Adams
      Test interpretations

      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Test interpretations

      By trents · Posted

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Need advice for some relief!

      By suek54 · Posted

      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      Test interpretations

      By MicG · Posted

      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
    • trents
      Test interpretations

      By trents · Posted

      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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