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Gemini

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About Gemini

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  1. I did not re-test my antibodies for a full year after diagnosis but I think your daughter should be checked again in 6 months. If she does have celiac, and I really am sure she does regardless of what this doc seems to think, they should decrease in 6 months. If she is fast healer, they could potentially be in the normal range but it varies from person to person. She did show damage in her small intestine but at 4 years of age, damage would not have progressed to the point where this doctor could be convinced it is Celiac. They set the bar way too high. Kind of silly to require you to damage her insides further to prove it to the AMA. I think she should go gluten-free, as you have stated, and re-scope her in 6 months to see how the original damage looks then. If it is gone, then maybe that would convince them. The 4 out 5 criteria is not done in kids because, I am convinced, of liability issues. They just do not want to get sued if by some small chance, they diagnosed someone who did not have Celiac. I think the odds of that are pretty slim, when you think about it. Even with a misdiagnosis, eating gluten free will never harm anyone. But as children are minors and cannot legally make medical decisions on their own like adults can, that rule is out for them.
  2. No, I did not state anything about exact conditions and lesser exposure. The study focused on animal feed, which did contain gluten, and how some people had reactions from exposure in confined spaces while feeding animals. Comparing that study to exposure from a wheat field is apples and oranges. I have yet to find any reputable literature on whether living near wheat fields at harvest time is a danger to someone with Celiac Disease. It would be helpful if there was some information on this. You did get support on this forum and we tried to tell you that you really need to see a medical doctor if you are that sick. That really is your only option right now. This coming from someone who hates doctors but even I know when I need to see one. You have a baby to take care of so need to be well. If you feel that you do have a gluten problem and do not want to be tested for it, then you might want to try the Fasano diet of only whole foods. You cannot go wrong with eating that healthy but you have to be strict about it.....no cheating. It is a pain in the butt to have to always cook your own food but that is something you have to get used to if you want to eat strictly gluten free. I do not eat out that much and cook EVERYTHING pretty much from scratch and I work full time. It is a royal pain and time consuming but we have no other choice, do we? Please do not stress about walking past a bakery or pub because you cannot be glutened from that. What might be happening is....and this happens to me so I am not criticizing you in any way........psychosomatic reaction. When I am in the room with food that is very gluteny and has strong smells, it makes me nauseous and I get a pounder of a headache. Regular pizza smell makes me absolutely gak. When I go out into the fresh air, symptoms go away within a few minutes. I look at it as my body protecting me from food that will make me very sick if ingested. I am not embarrassed about it either because it's real. That is what may be happening to you. I hope you stay on the forum because there are very smart people on here who want to help. It is good to work with a nutritionist to help you develop a healthy diet but if you continue to be this sick, you really need to see a doctor to figure out if there is another underlying condition you are missing. If you do have Celiac, then there are other autoimmune diseases that occur with frequency with Celiac. I know......I have 4 autoimmune diseases in total and 1 of them gives me more grief than the Celiac does. I hope you feel better soon...I really do! I understand what it feels like to be that sick.
  3. After reading these few posts, I really think it all depends on where you live and the doctors attitude about the whole process. I think a biopsy is not always needed. It depends on the circumstances and symptoms, etc. Sometimes it is harder to piece together a proper diagnosis while other times it's so obvious. Many people now do not even have GI issues, which used to be the hallmark of Celiac. This is why it is so difficult for some. It would be nice if there was a very definitive test that was either positive or negative, with 100% accuracy!
  4. Not to beat a dead horse here but I looked at the linked article you provided and it talked about exposure to animal feed in enclosed spaces, not driving or walking near wheat fields on a windy day. Unless you are a farm hand, feeding cattle or horses with gluten containing feed in an enclosed, non-well ventilated area, it's not an issue. The Fasano diet is a short term diet for those who are slow to heal. Some people do have problems with grains and they found that putting them on a whole foods diet only, many of them went on to heal and could then consume processed gluten free food items like bread. Lots of people do this in the beginning for faster healing. But it only works for people with Celiac Disease and you aren't even sure that is what the problem is. I posted this so anyone new to the diet reading these things will not become confused and think you cannot walk past a wheat field or a bakery. Inhaling visible wheat flour in a bakery is not a good idea for anyone with Celiac Disease and will make you sick/react and you won't be able to work in one but walking past bread or any gluten containing food is not cause for concern.
  5. Have you seen a doctor to figure out what is wrong? If you don't know for certain you have Celiac, then you don't know what really is wrong. The situations you listed for being glutened should not cause any reaction, no matter how sensitive you think you may be. You need to ingest it to cause a reaction and cannot be glutened from walking past a bakery or pub. I have no doubt you are as sick as you say you feel but your symptoms of being too weak, tired and depressed are serious symptoms and should be addressed by a doctor. They can be symptoms of many things and you may be missing something else. You say you are caring for an infant....is this your child? Is it possible you may have postpartum depression? I think the fact you say you are constantly ill means you really need to see a doctor to find out what is wrong. If you actually do have Celiac and are eating gluten free, you should not be constantly sick. I wish you well but please see a doctor......you have a young baby to care for.
  6. Puffy eyes can be from allergy or can be from thyroid disease........which occurs frequently with Celiac. I am not saying he has thyroid disease but puffiness under the eyes is a classic symptom of low thyroid. When your metabolism is slowed down from a sluggish thyroid, fluids can collect in places like under the eyes, in your lungs and other places. I have Hashi's thyroid disease and allergies and have some puffiness under my eyes. It really doesn't go away but I am 57, not 4! The discoloration of his teeth is another extremely classic symptom. My 2 lower front teeth came in yellow. There was absolutely no enamel on them. Read this article: http://allergicliving.com/2013/03/13/celiac-diseases-toll-on-your-teeth/ Sounds like your son may indeed have Celiac. Good luck with the rest of testing!
  7. I have both Hashi's and Celiac and it is about 98% certain your daughter has Celiac. My tTg was as high as your daughter's at diagnosis for Celiac.......Kareng is correct in that it is only mildly elevated with thyroid disease, not off the charts elevated. The doctors should have done a complete Celiac panel, for future reference when checking antibody levels. Just be aware that in kids, they sometimes do not find enough damage to make a diagnosis off of the biopsy. It can take years for damage to accrue to the point where they find it. However, with a tTg that high, it is almost certain they SHOULD find it. Good luck!
  8. I think it all depends on where you live. I live in Boston, Mass. and we have many Celiac specialty research/hospital clinics here. I have been gluten-free for 11 years and not one doctor I have ever seen since diagnosis ever doubted I had Celiac. Once they took a look at my blood panel, they agreed there was no doubt. If a doctor doubts the diagnosis when a person has very high antibody numbers on multiple tests on the screening panel, then they need to find a new doctor. Some doctors are more liability based than common sense based. The biopsy is not so much the Gold Standard any more. It certainly has it's uses, especially when people have ambiguous blood work or there is suspicion of something else. The antibody tests have come a long way and are very reliable.
  9. Considering the amount of foods that you need to omit, I doubt you will find many, if any, that are safe for your daughter to consume. Most people, even sensitive ones like myself, only need to omit gluten and maybe one other food group and for that, there are many carb foods that are safe. I have been gluten-free for many years and don't know of any that are free of everything you list. That's a tough one!
  10. Now if only the apple cider donuts were gluten free, life would be perfect!
  11. You know, cstark, you are young, you will heal. People often overthink this and obsess about what they are eating. Follow a good, healthy gluten-free diet which can include official gluten free foods. If you find that you don't feel well after eating certain items, then exclude them for now. Many, many people do just fine and do not have to follow uber strict diets to heal. Those people are in the vast minority. Just relax and realize that healing does take time so be patient. After 11 years gluten-free, I can hammer down just about anything as long as it is very gluten free without too much dairy. This after having a totally compromised gut at diagnosis. I could barely hold anything down. The exercise is a very good idea too!
  12. Very good advice here........ I was going to suggest the EMA but that is an expensive test because it has to be done by a technician and not a machine. I guess they figured they would rather make the money themselves from the biopsy......
  13. Yup...this about says it all! Emma.....I refused the biopsy and had very elevated blood work also. I nearly choked on my tea when I saw your results because with numbers that high on the partial blood work they did, there is no doubt you have Celiac Disease. Your blood work shows you are reacting to the gluten you were ingesting (DGP) and you would most likely show obvious damage on biopsy as your tTg is very, very high. Those are not false positives. A false positive can occur on the tTg from other autoimmune diseases BUT it usually is a much smaller elevation....like 10-20 points above reference range. It can happen with thyroid disease. Your numbers are the "Holy Crap, Batman! You have Celiac!" numbers. I completely understand why you refused the biopsy. I presented with classic Celiac and had severe iron deficiency, along with many other symptoms so when I received the results of my blood work and failed all tests except the one tTg/IgG, that clinched it for me. It was a light bulb moment. I was also extremely sick at the time of diagnosis, gastro- wise, so the thought of them shoving a tube down my throat to satisfy their little diagnostic criteria was enough to make me even sicker. The GI profession totally failed me for years so, even to this day, I do not and will not have a GI doctor. Anything I need testing on with regards to Celiac Disease is done by my PCP or thyroid doc, who was the only one to help me when I got dangerously sick towards the end of the ordeal. Do not ever let a doctor push you into testing you are not comfortable with. Find someone else who will listen to you and not try to make more money off of your illness. Your results are definitive...you have Celiac. If your anemia resolves, then that is additional proof. In the end, I did not need one. It has been 11 years gluten-free for me, and my stomach is a calm and happy place now. I am strict with my diet and it is well worth the effort to get the results I have achieved. One more thing....if the blood results are that unreliable, then why would they do them in the first place? What a stupid thing to say to someone! Find other doctors, if you can easily do that. Welcome to the club!
  14. This post is excellent and says it all! I had the same experience, Arasmas, so every word you said about doctors here is true, true, true! Ebloom......you sound like a walking, talking Celiac and if you cannot maintain your weight no matter what you do, then look for Celiac. I could never get above 105 pounds and I ate like a teenage football player. By the time I requested the blood work, because no one else did, I was down to 92-94 pounds and was a walking skeleton. If it weren't for my unending research on the internet, I would probably be dead now. You must be a very patient person because if any PA ever spoke to me like that, they would be taking them out by ambulance. It sounds like he learned about Celiac from a 1950's textbook! Good luck and get tested...take no prisoners!
  15. I have to admit, that was a brilliant thing you said to the teacher! I like the comparison to pork and I'm going to have to remember that one.