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Gemini

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About Gemini

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  1. 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!
  2. 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.
  3. Good luck! Please let us know how it goes.
  4. 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!
  5. 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!
  6. 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.
  7. 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.
  8. 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!
  9. 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!
  10. 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!
  11. tTg is not used for dietary compliance. The DGP is the correct test for that. It can take a year or slightly longer for tTg levels to normalize once the gluten-free diet is started so having an elevated number 6 months into the diet is not cause for concern.........unless the number hasn't gone down at all or the DGP is still elevated.
  12. The scratch testing doesn't give you much to the degree of severity. If you have the dermal injection type testing, they can measure the weal and have a scoring system for degree of severity. WIth blood testing, you have to do IgE and IgG. I didn't even trip the IgE but the IgG testing was through the roof for molds. People don't always react typically with allergy testing, just like with Celiac Disease. You can also have mild allergies to many things and that can be as bad as a single allergy that is severe. it's the "rain barrel" theory. If there is underlying disease conditions or inflammation, mild allergies can be temporarily worse enough to make them test severe. As far as not having seasonal allergy symptoms, they can be atypical. My typical symptoms are fatigue and hives, not congestion or sinus infections like most people get. Allergies are still difficult to figure out sometimes.
  13. Hi Lacey, I have many allergies myself and am currently doing the SLIT therapy, which is sublingual allergy drops. It is the same thing as allergy shots but formulated for sublingual use. I cannot get to an allergist once weekly because I work for a living so decided to try this method. I have been gluten-free for 11 years now and my gut feels fine....no problems there. But I am challenged on the allergy front and now that they have added the dreaded mold mixture to my serum, I am dragging around and feel less than stellar. I am severely allergic to molds. I would not imagine molds would be a huge problem for someone living in Colorado but if you are reacting to some of them, they can really make you feel horrible. The trouble with scratch testing is that it doesn't tell you how bad the allergy is....you just react and they know you have a problem. I had a 15 mold panel blood test done but many docs do not believe in that kind of testing. It is very hard to trip a blood allergy test but I did and it showed I am allergic to 14 out of 15 molds. Lucky me, huh? But it gave me actual numbers with regards to severity so now I can repeat the testing periodically and see if those numbers improve. Are you now receiving immunotherapy (allergy shots) as treatment? I have done those in the past and they did work very well but it does take some time. I would stick with it because its better than dosing heavily with allergy pills. As far as antihistamines are concerned, I take Benadryl at night before I go to bed. Children's Benadryl because I am a thin Celiac and the adult version knocks me on my ass. If they are dosing you out on antihistamines during the day, you are going to be drowsy. Maybe try taking one at night before bed? That way, it helps you sleep and you are not walking into walls during the day. Allergies are somewhat connected to the gut because your immunity begins in the gut. 80% of your immune system function comes from the gut so this is why a good diet is essential. You can see why allergies can be a huge problem with Celiac because of the gut issues we have. Celiac messes with your gut and then you can develop allergies as a result.....the old leaky gut problem. I am not having any gut issues but you are. So...maybe the food allergies are messing with your gut and in turn, your allergies have spun out of control. Have you lived in Colorado a long time or most of your life? The longer you live in the same place, the more likely you will develop allergies. You essentially become overloaded from constant exposure to the same things. I have lived in New England all my life so that has not helped. My BIL lives in Colorado and when I visit, I feel great! No mold to speak of or at least, different strains. The only advice I can really offer is work on the gut and that should help you with the allergies. Continue immunotherapy because it can work very well. I understand what you are going through and the sucky thing is that with allergies, there is no immediate fix. The trick is to build up a tolerance with the shots. Use an antihistamine at night and no, they will not hurt you, long term. I have been using them for about 3 years and if I go off of them, I get hives. The other thing that might be worth looking into is histamine intolerance. That can happen with Celiac and others on the forum have had that issue. Maybe someone else can chime in on that and give you better advice. You could try a low histamine diet and see if that helps you feel better. Sorry you are suffering....I know how you feel. I hope you get some relief from the treatment and feel better soon!
  14. Have you had your blood sugar checked recently? Those symptoms are very common to those with untreated diabetes and those with celiac disease are at higher risk for developing it. I had blood sugar problems before I was diagnosed but they all went away after being gluten-free for awhile. At 7 months gluten-free, you should be able to handle gluten-free oats...unless you are one of the small percentage who cannot tolerate those either. Maybe try them again a couple of times and watch for symptoms afterwards? That is the only way you'll be able to tell. I would write down everything you are eating daily so if this happens again, you can try to see if you ate the same foods when it occurs. Don't worry....as more time goes on, you'll be healing and feel better.
  15. It is not quite true that a lot of oats are contaminated or companies are using mechanical separation instead of dedicated fields for growing oats. Most use dedicated fields and the oats are very safe. I have been eating gluten-free oats for 11 years, am very sensitive to gluten but do not have an issue with gluten-free oats. I would not trust Cheerios but you can find safe oats easily.....much more so than when I was first diagnosed.