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Gemini

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Gemini last won the day on December 3

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  1. http://www.justglutenfree.co.ukI 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! http://www.justglutenfree.co.uk I should add that it is suitable for vegetarians!
  2. 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.
  3. 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.
  4. 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!
  5. 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!
  6. 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.
  7. Good luck! Please let us know how it goes.
  8. 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. http://www.thepatientceliac.com/2014/01/04/mast-cell-activation-syndrome-madness/#comment-11160 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!
  9. 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!
  10. 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.
  11. 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.
  12. Almost everything you listed as containing gluten does not. Some definitely have gluten free counterparts that can easily be found in most grocery stores but things like bacon, red wine, ham and a few others are naturally gluten free so a I am not sure where you came up with this list. Many of what you listed are not the healthiest choices out there and may cause stomach distress in some people but it most likely would not be from gluten. As always, read the label!
  13. It is not hard to avoid gluten in daily life if you understand how cross contamination works. No one should be using a computer if they haven't washed their hands after eating lunch that is gluten heavy. Who wants to get smeared food on their electronics? Plus, hand washing should be the norm, not only for gluten avoidance but for general hygiene....especially during flu season. I have been gluten-free for 11 years and am a very sensitive, diagnosed Celiac who gets sick from crumbs. The last time I was glutened was 2 years ago and I find it very easy to go that long, or even longer, without getting sick. My antibodies are always in the excellent range and they were sky high when I was diagnosed. With each passing year, it becomes easier to do this because you have an added year of experience. I'm pretty anal about it, though. I just never take chances with food I am unsure of. If you follow good protocol all the time, you can very successfully eradicate it from your life. I know it seems overwhelming at first but that is because it is all so new. The statistics you stated aren't quite true. After 5 years on a strict gluten-free diet, mortality rates fall to that of the general public. The key is to be strict with your diet, eat healthy, and I would bet you have a good chance of living a long, healthy life. You should not worry about keyboards, mouses or doorknobs because one should never be putting their hands in their mouth without washing them first. If people could be glutened this way, we would never be able to leave the house and would have to live in a bubble. Relax.....with some education and experience, you'll be fine!
  14. My cholesterol was always in the toilet, pre-diagnosis. My total was 125 and my HDL was in the low twenties. The LDL was super low also. Doctors thought that was so great but the dopes didn't realize that having your cholesterol that low was a warning sign. It should not be that low. It slowly crept up over the next 7-8 years until it reached around 160-170 for total. So, I figured that I was healing. Then I had it done in the Spring of 2015 and it was 200 for total cholesterol, Tri levels were healthy low around 50 and my LDL had jumped to 110. However, I was pleased as punch that my HDL was 82! The AMA have reduced the LDL normal to <100, when before it was <130. Do I worry about an LDL of 110? Not with an HDL of 82 and rising. The reason my total made the jump to 200 was because of the HDL. So, I would say that if your numbers are tanking again, you should look into malabsorption testing. Your other numbers are not bad but your total is too low. Glad to see you back!