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Gemini last won the day on December 3

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  1. The tTg may not spike upwards much after a small gluten hit. It would take repeated hits for that to go up and show on blood work. Yes, the tTg correlates to intestinal damage so if you are mainly gluten-free but take a small hit, it may or may not be enough for it to elevate and be caught on blood work. That is why they want you to be consuming gluten right up to the biopsy and blood work because once you go gluten free, damage starts to heal and that affects testing. Yes, the AGA (anti gliadin) is sensitive and a good test to use but the DGP is even more's the newer, improved version of the AGA. That bump up could have been from a gluten hit because it is the test for the reaction to the gluten you are consuming. I think you are testing too much. At the very least, test at six months out but many wait for a year.......unless your symptoms are not improving. I refused the biopsy also because I was too damn sick to do one but had sky high blood work at diagnosis......on all the tests in the panel. I waited for 1 year to be re-tested and all numbers were in the normal range at 1 year.
  2. The only real way to test for food allergies is challenge testing. You guessed eat concentrated food samples in a doctor's office and see how you react. I do not have food allergies, just intolerance's, so do not know much about blood or skin testing for foods. Seems logical that the best method of testing is to eat the food and see what happens. I really am skeptical of skin or blood testing for food allergens but that could be due to lack of knowledge. An intolerance to food is IgA or IgG based and allergies are IgE. The IgE reaction is usually much faster than that of an IgA/IgG, although you can have an allergic reaction happen hours after ingesting what you are allergic to. The few times I reacted to my allergy shots for environmental allergies, it happened about 3 hours later at home and not in the 20 minute window they give you at the office. Go figure........I am always slow in everything. But both an allergy and an intolerance like Celiac are autoimmune responses.........just a different type of antibody response. You can definitely have both an allergy and an intolerance to wheat. I am not sure if the testing you had was reliable but it doesn't matter. You are gluten free so it's a moot point. Did you have any allergic type symptoms when you ate wheat before going gluten-free? Symptoms listed above in cyclinglady's post?
  3. Take a deep will be fine! What the test means is that your villi are probably as flat as linoleum. That is very funny by the way and I will have to remember that one! Now....I am not laughing at the fact that your villi are damaged but as someone else who had sky high antibodies, I can assure you that, with time and a strict gluten-free diet, you will grow your little missing villi back. Really, I would not lie to you! I was 45 at the time of diagnosis so if this older lady can completely recover, so can you. It has been almost 12 years for me and I feel better than I did in my 30's. Below are links to 2 books that will give you a wealth of information on Celiac Disease. Please do not read anything written by celebrities. Many people make that mistake. Learn the diet well, ask any questions here on the forum because, most of the time, we can answer anything here. As an after thought......having a really high tTg does not always mean that there will be a lot of intestinal damage. It's funny how it works. I had extremely high tTg and failed the whole panel so I did not have the biopsy. It was apparent that I had no villi left at all because I was losing 1 pound per day at diagnosis. It was bad. But you say you have no symptoms or weight loss so maybe the damage isn't horrible. Whatever it have Celiac. You were anemic and have very high tTg. The good news is that you will be fine but don't expect back to normal on testing for about a year. It may happen sooner but have patience!
  4. am not sure if the reaction to oats works on the same principal as that towards wheat gluten. I do know that some Celiacs react to the protein in oats the same as they do to wheat but at what levels I am not sure. It may be the same small amounts, though. Are you sure that the oats used in the shakes were certified gluten-free oats? You have to remember that you are new to gluten free so need healing time. What may not bother you on some days may bother you on another. The exercise problem is not permanent. I exercise twice a week in the gym and there are some days when I may be tired and I do not do as good of a work-out as on others. Sometimes they ramp up the work-out and they are hard. I may not do as well sometimes with that. Everyone has good work-out days and bad. That is completely normal. People without Celiac have that experience. I did not start working out until I was gluten-free for 5 years. It took me that long to get healthy enough to begin a program. Do not work-out on days when you are tired or not feeling your best. Just go for a walk. Do not feel guilty about it. Make sure you have had enough to eat before the work-out or you will run out of energy and crash. The gluten-free bread in England is good.....very good. You need to eat carbs to work out also. The "Just" brand of gluten-free bread from Scotland is excellent. Check it out! I should add that it is suitable for vegetarians!
  5. I have not made anything worse. I spoke the truth. That is the most important information to give anyone new to Celiac. The only medical issue where cross reactivity happens is allergy. Celiac is an intolerance and there is no validity to cross reactivity with Celiac. In other words, coffee or anything else on the internet list will not be mistaken for gluten. If someone is reacting to certified gluten free oats, it is either because they are reacting to the protein in oats (which is a well known occurrence) or they aren't eating certified oats. Or they are having a problem with the amount of fiber in them. This is not a side discussion. It is very important for people to understand that cross reactivity in regards to intolerances has no medical validity. They should not be cutting out foods from their diet they do not have to.
  6. Sorry, Peaceflower, but cross reactivity is a HUGE myth. You are confusing a reaction to oats with contaminated oats. Your daughter may be one of a very small percentage of Celiac's who react to oats and it has nothing to do with gluten contamination. Not to mention that certified gluten-free oats are completely safe for those who can tolerate oats. But no one who is symptomatic or newly diagnosed should be consuming oats of any kind. Let's not make things worse here.......the OP is having a difficult enough time as it is.
  7. All I can say is I am happy that you have been cancer free for 2 years and hope that trend continues for the rest of your long life. As far as those doctors are concerned, I cannot blame you in the least for still being angry about it. My take, for what it's worth, is that they missed your damaged area's from Celiac because finding a mass trumps everything else. They concentrated on the trees because they got lost in the forest. If a person has positive blood work and a negative biopsy, it means they missed the damaged bits. What the hell does latent Celiac Disease even mean? Keep eating gluten until you have enough damage, including cancer, for them to find? Nothing else causes positive blood work on a Celiac panel except Celiac Disease. The only exception would be a positive tTg, which could mean another AI disease but it would have to be low positive, not Celiac high positive. You will need to be determined and strong with the doubters. Let them know you will not tolerate being sabotaged with your diet or throw any negative thoughts your way. This is too important. As for the docs, tell them you are strictly gluten free due to your cancer diagnosis and positive blood work so shut up about it! . Best of luck to you.........we believe you!
  8. I am really trying hard to be empathetic with your posts because you are so new to this but really? You reject counseling, which is a very good idea, you feel that your life has ended and now you can never go out to eat and are totally isolated socially and the only word I keep seeing is can't. You know what? You are probably right because what you put out, you get back. I was incredibly sick at diagnosis and down to 94 pounds. I went years and lost years to being sick. I was 45 when I figured it out myself and had to go and ask for the blood work that they never offered. Granted, the blood work was fairly new but, as I presented with classic Celiac, there really was no excuse for their malpractice. After all that, not once did I ever feel my life was over. I was ecstatic to find out I had Celiac because I could now start living again and regain my health. Guess what I learned? I can eat out safely at selected restaurants and the number of times I have felt restricted or left out socially is about 4 times over almost 12 years. There have been those very few times and yes, it did suck but I am a grown up so got over it in about 1 day. It could be a hell of a lot worse. I could have had cancer and be dead by now. I could have been in an accident, like my husband's cousin was, and become a quadriplegic. Everyone is going to have bad things happen in their lifetime and it's how you respond to challenges in life that predicts the outcome. I know this is much harder for some people but if you keep saying can't, can't, can't you will never recover emotionally. If you do not recover emotionally, you will not recover physically. I am really hoping that things will change for you, mentally. It does take a while to recover for many, including me. It took 3 years before the very last symptom went away. If anyone has a right to bitch, it's me. I have 3 other AI diseases along with Celiac and the Celiac is the easiest one to deal with. I have bad days too but for the most part? I refuse to let this take me down and enjoy life much more than I ever did when I was a young woman. Oh yeah...and I travel too. International travel. It takes a few times before everything works out smoothly but it can be done. You really must work on your attitude or this disease will do you in and there is no reason for that to happen. Whatever help you need with eating out or food...whatever, just ask! We are here to help and make the transition as smooth as possible. You may get mad at me for saying all this but it needed to be said. I really hope things turn around for you soon and your body and mind start to heal!
  9. The tTg only tests for intestinal damage. The DGP tests for reaction to gluten consumed in your diet. Both tests should be run on follow-up, always. That is the only way you will know if you are compliant with the diet the way it is meant to be followed. The number that is most important is the DGP and the only number that needs to be in the very low range on testing. If normal is anything below 20, they like to see DGP in the 2-3 range, not 15, not 10. This is standard information on any reputable Celiac site.
  10. Good luck! Please let us know how it goes.
  11. It sounds like classic Histamine Intolerance. You may want to take a look at this article, written by a doctor who has Celiac and was a contributor to this forum for a bit. I am sorry you are suffering with this. I have severe allergies, along with Celiac, and my little trick is hives. I feel your pain!
  12. No, total IgA should always be done with any other IgA based testing to see if you make enough of the antibody for the testing to be valid. There are people who are IgA deficient, which would make any IgA testing unreliable. They then go to IgG based testing. Yes, heart problems are connected to Celiac. A-fib or other heart rhythm issues can be directly caused by Celiac Disease. There have been quite a few people I have met whose heart issues went away after being gluten-free for a while. Doctors have a tendency to blame everything on a virus. Even the best cardiologists can be clueless about the effects of gluten on the heart. I have read the cause can be from the heart producing anti-tTg antibodies, like the intestinal tract does when a Celiac eats gluten. With your family history of Celiac and your symptoms, it looks like you have just joined our little club! Good luck with biopsy but keep in mind that if they come back with a negative, it does not rule Celiac out. Damage can be patchy and it can be missed. Make sure they do at least 6 samples from different parts of your innards!
  13. The IgG testing for environmental allergies are accurate if your allergies are bad enough. It is very hard to trip them but I just had a mold panel done. Not to see if I was allergic to molds because I already know they are severe. It was to see which ones out of a 15 mold panel I was allergic to and how bad they may be. I knew I would get positives because of my symptoms when it rains or is humid outside. I am allergic to 14 out of 15 molds, 2 of which are well beyond their classifications of severe. No surprise there. I am doing sublingual allergy treatment, which is the same as allergy shots only formulated for sublingual use. It is making me symptomatic but I choose to soldier through in the hopes that the treatment will build resistance. It worked for me before and gave me great relief for a long time. I am hoping for a repeat performance on that one! From what the doc told me, IgG allergy blood testing is really for those with severe allergies. The vast majority of those with severe allergies will trip the blood testing. Seeing as IgG is the most common antibody in the human body, when you are in a super allergic state, then it will show in IgG testing. It can be very useful for certain cases. I cannot speak for IgG food allergy testing because I don't seem to have a problem with anything but gluten and dairy.
  14. Yes, that is why I mentioned always reading a label. Just because one brand of ham may contain gluten does not mean they all do. I have yet to find one that is not gluten free but I am sure they do exist.