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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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    • catnapt
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    • trents
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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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