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Gemini last won the day on December 11 2016

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  1. If you are having this much trouble with just being gluten free, then the aging process will push you over the edge. Sorry to be so harsh but you are still complaining about the same things, even after people have gone out of their way to give you stellar advice and positive feed back. You are right....you probably won't heal because you are beyond negative. There is no reason you cannot live a totally normal life, including social normal. It's your mindset that is holding you back. I wish you luck with your mental state regarding Celiac Disease but you have a lot of work to do if you want things to get better.
  2. I couldn't agree with this more, Arlene! He's a major whiner who doesn't seem to get it even after all this time gluten-free. Thanks for posting this!
  3. Thank you, JMG, for posting these links! I have been to London many times and already have a list of great places to eat but you just added more variety for me. I am returning for a week in May so look forward to trying some new places! Ricardo......London is pretty easy for eating gluten free. I am very sensitive and have never gotten sick dining in London in many visits. Carluccio's is Italian food and I know many 4 year old's like spaghetti/pasta so it may be a good choice for you. Cote is another great place to eat.......French country food that is delicious. One of my favorites. They also do a great gluten-free breakfast too! Hope you have a great time!
  4. Mass General is a very rigid, mainstream hospital and I have heard of a couple of complaints about how people were treated that makes me think twice about referring people there. They do not think outside the box at all. I think they are great for emergency medicine but with chronic disease, they may not be much better than any other place. If someone has no idea who to go to, then I would say give it a chance but just because it is Mass General does not mean they are the end all, be all of Celiac Disease treatment. I would suggest calling and asking for the doctor's names so you can research them on-line.
  5. These are the enzymes I used while healing: http://enzymedica.com/products/digest-gold-enzymes-digestive-enzyme I will warn you that they are pricey but all good supplements are pricey. If you want to look for another brand that is less expensive, that is fine but just make sure they are gluten/allergen free. Take one with a larger meal. I did not take them at every meal because they are pricey and I really didn't need them for smaller meals like breakfast. I also took them with heavier foods until my gut healed and I could handle fats again. Try not to worry too much and do not overthink things. Just eat healthy and really gluten free until you learn the ropes. Get plenty of rest. Let the worry go because you are going to be fine. Changing your diet and healing naturally takes time but you will get there. I would recommend reading this book: http://www.barnesandnoble.com/w/celiac-disease-peter-h-r-green-md/1100151139 It is written by one of the leading Celiac researchers in the US and is a very good read. It will teach you how the digestive process works, which is essential to understanding Celiac. Too many people do not put any amount of time into REALLY learning about Celiac and their gut function. It makes managing the diet and lifestyle much easier. It made me understand the symptoms I was having and why. I am sure some of the worry and anxiety you have are Celiac related. I never have anxiety EXCEPT on the extremely rare occasion when I take a hit. Then I am crazy lady for 2-3 days. But I have been doing this for many years and the last time I was glutened was 2 1/2 years ago. I am now trying to set a personal record.......
  6. I still think the whole notion that 2/3 of all Celiac's do not fully heal is a crock of pooh. It might be 2/3 of people who aren't careful with their diet ( all of the other people in my family with Celiac are nowhere near as compliant as I am and it drives me batty) or those who do not take the time to learn food and the diet correctly and are making mistakes. I know plenty of us who have healed and don't even go to doctor's regularly about it because they are doing so well. Let's face it...many go to GI's because they are having continuing problems. Those who aren't, don't, so maybe they aren't even in the equation. Doctor's do sometimes throw in the scare factor to keep appointment books full. Why do I say this? Because I want all newbies to have the expectation of healing and health. Be good with your diet, don't cheat, and remain positive!
  7. Make that 2 cynics. If the blood work is strongly positive, then you have Celiac. With that very specific list of "in your face" Celiac symptoms, have the second biopsy if you want but I would go strictly gluten-free for life after that is done. Best of luck to you!
  8. Hi Sara, I little bit of advice from another Celiac who had extremely high tTg numbers at diagnosis and was very sick......if a food is not bothering you, then continue to eat it. I was able to tolerate some processed foods so ate them. I was 20 pounds underweight and needed to gain badly. So I ate gluten-free bread with no issues at all. I never liked spicy foods but that is for another reason. I ate beans also and did not have a problem. This will not affect healing time, either. As for re-testing my numbers, I did not do so until a year had passed and at the end of the year, my numbers were in the normal range. I never cheat and am very careful about gluten ingestion and cc. I was 46 when diagnosed also but still managed to heal well eating foods that some feel you should not eat. Go by how you feel after trying new foods. If they bother you, then wait a while longer before trying again. I also strongly urge you to take digestive enzymes while you are in the healing stage. They work very well as an aid to digestion while the gut is still compromised.
  9. Pharmacists are not going to know what is safe for a person with Celiac to take. It is up to us to make sure our meds are gluten free. They deal with drug interactions and making sure people are not prescribed drugs they are allergic to.....Celiac is a food intolerance and not an allergy. I never depend on anyone else to tell me what is safe to eat or take. FYI.....In 12 years gluten-free, I have never found any drug I may have had to take that contained gluten. However, I take very few drugs but one of them is thyroid hormone. I took Levoxyl for quite awhile but my needs changed and I switched to a natural form that contains both T3 and T4 hormone. I never found any thyroid hormone that contains gluten. If you take a lot of meds, it might be more problematic to check everything but finding out if meds are safe to take becomes relatively easy with time.
  10. As far as I know from 12 years of gluten-free, anything with malt is a big no-no! I am curious as to why Coeliac UK would consider it safe unless there has been real development of gluten-free malt vinegar!
  11. The article seems to implicate Round Up as a cause of Celiac, which is a bit ridiculous as Celiac Disease has been around for many, many more years than Round Up has. I am not defending Round Up because it is nasty stuff, I just do not think it is a major factor in other food intolerances that can happen with Celiac. There are many different reasons why people develop additional intolerances and many times, they go away with healing. Not always, though, and that can be from many different reasons also. Doctors are notoriously bad with food related medical issues so finding out the true causes will be forever challenging.
  12. Hello Oz......you do not need a biopsy with a panel like that! Mine was the same so I was also diagnosed with just the blood work. It's great that you have a doctor who has some common sense about testing and who also did vitamin panels to check for deficiencies. What your blood panel shows is that you are reacting to the gluten you are eating (the Gliadin AB testing) and there is damage to your intestinal tract (the transglutaminase IgA). With a strict gluten free diet, you'll do fine in the long run. It's such a huge relief to finally know what is making you so miserable after eating food.......I know how that feels! As for eating out, do so cautiously in the beginning, only when you have to. Give your gut time to heal. This website can be a big help: http://www.findmeglutenfree.com/ It will give a listing, by city, of restaurants that have been vetted by other Celiac's. You can read their reviews and decide what works best for you. But I would try to avoid eating out until your antibody levels are back in the normal range. I went on a trip shortly after being diagnosed and had to go because I would have lost a lot of money. I just ate plainly and very carefully and did not have a problem but it can be tricky until you learn the ropes. FYI....I never, ever eat fast food. Not only do I not like it anyway, there is just too much risk eating in that kind of establishment. Welcome to the club!
  13. Actually, it is very common to have delayed reactions and is indicative of classic Celiac Disease. The antibody response takes time to build up to the point where you actually start to experience symptoms and this is why it took YEARS for me to figure out it was the wheat that was causing me so much grief. I have classic Celiac and it always takes about 2 days before I start getting really sick. Unless it is a really big hit and then symptoms happen within 12 hours. I have been doing this for years so I go very long periods of time without a problem now. Glutenings are a very rare thing for me at this point, thank God! You have to make sure his grandparents never, ever feed him gluten again. I know it is difficult to make people understand how small amounts do such extreme damage but they must understand and follow protocol with him. Good luck!
  14. 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 sensitive.......it'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.
  15. The only real way to test for food allergies is challenge testing. You guessed it.......you 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?