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Gemini

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About Gemini

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  1. I think the posters above have given you very good information and I will throw in my 2 cents worth. I am surprised that they did not test her DGP IgA also. I am sure that would have been positive. They switched off with antibody classes and usually they do both tests for both antibodies. IgA is more specific to Celiac but the IgG is also useful. The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4. She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy. I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away. That might be the only recourse if you want faster proof. I know I would want faster. I would not really be happy if I thought I had to keep feeding her something that was making her sick. If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids. I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only. Keep that in mind because it might come up. You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think. It's a recurring theme here. With her symptoms, which is what I had, a bloated belly and tummy aches are telling. Have they tested her for lactose intolerance? That can cause similar symptoms, although it sure won't raise those 2 blood tests. Keep looking for Celiac because there are many red flags here.
  2. Take a deep breath and calm down! The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience. You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet. Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine. There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think. So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications. Really...do not worry about this. Concentrate on learning all the ins and outs of this disease and how to live gluten free happily. We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!
  3. What she said! The antibody panel is an important part of follow-up!
  4. I have Celiac, Hashi's thyroid disease, Sjogren's Syndrome and Reynaud's Syndrome. All have gotten better, inflammation wise, after 11 years gluten free. I am very strict with my diet, never take chances if I feel the food is not really gluten free and limit the number of times I go out to eat. I am not saying I never go out but it is normal for my husband and I to not see the inside of a restaurant for 3-4 months at a time and then I only eat at the places that have never glutened me. I am lucky in that the state I live in has 3 restaurant chains that are run/owned by Celiac's, so they get it right every time. You have not been gluten free for very long, in reality. It took me three years to completely rid myself of all symptoms related to the disease. I was 46 at the time of diagnosis. I know it is hard to accept that healing can take that long but you have to measure it differently. Looking back, you should feel better than you did a year ago. As time goes on, healing slowly takes place until you realize that certain problems have disappeared. It is not as cut and dried as taking an antibiotic for an infection. http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html Read this article on elevated c reactive protein. It is by Dr. Weil, who is a Harvard trained physician who chose to go the more natural route to healing people. All his stuff is interesting. Yes, your elevated level will most likely come down, as you heal better. Pay attention to it but don't let it freak you out too much!
  5. Good luck with all the testing. You are doing the right thing by telling your son to gluten up! Buy him one of those gluteny cakes at a bakery...if that doesn't spike his numbers, nothing will.
  6. HIV doesn't turn off the immune system, it destroys it to the point where most people die from complications that arise from having no immune system. Some end up with pneumonia or cancer, which takes their life. It is pretty amazing the treatments they have developed for it, to slow it down and give people longer, quality time. I am perfectly content with the gluten free diet as my treatment and honestly, if they developed a pill that they claimed would make it possible for people to eat gluten again, I doubt I would. I could not bring myself to eat a food that I am genetically programmed to not be able to digest and that totally pisses off my immune system. However, if they succeed with some of the meds they are working on now, one of which I posted about earlier this summer, I would take those. They are working on things that modulate the immune system down so inflammation can be tamed down further. Even with a strict gluten-free diet, there will always be more inflammation for us than for those who don't have AI diseases. I do everything possible to tame it down myself but it isn't in the normal range.....yet. Long term inflammation can kill you so something along those lines would be welcome. You would still have to eat gluten-free but the disease activity would be calmed down. This is a drug that targets those with lupus and maybe Sjogren's....which I have. There are possibilities for other AI diseases from that!
  7. katesyl.........this is an older topic so the OP most likely won't answer. I can, however, offer a piece of advice for you. Just going gluten free will probably not drive your inflammation markers down into normal. It does depend on how high they were to begin with but with all autoimmune diseases, there will be inflammation going on forever. Get used to wonky blood work because most of us will have that issue. I have 4 autoimmune diseases in total and, although I have driven certain inflammatory markers way down, my recent sed rate number was elevated. The normal is supposed to be 30 and under in a woman my age but mine is 50. With 4 AI diseases, I doubt it will ever be normal and I don't let it bother me. I am not willing to take major meds at all and use more natural anti-inflammatory supplements. You can do whatever you feel comfortable with in regards to treatment but don't expect normal numbers with Celiac Disease. Inflammation will improve but normal? Most people never get there completely.
  8. Personally, I would ask for the full Celiac panel and see what that shows. I mean, the full Monty, not just cherry picking testing. On the full panel, if the tTg and the EMA come back positive, that is a diagnosis without biopsy. This is how I was diagnosed and there is absolutely no doubt I have Celiac. I presented with classic celiac so it was a no brainer with my blood results. If you cannot stick to the diet religiously, without cheating, unless you have a biopsy picture, then I would go on to have a biopsy. Like your daughter, I was way too sick to have one done at the time. They would not have agreed to use sedation because I was so anemic and malnourished and that ended that! Good luck with whatever you decide!
  9. It is absolutely possible for non-Celiac gluten intolerance and/or gluten sensitivity to cause extreme symptoms. The difference between those and Celiac is that Celiac will cause actual small intestinal damage to the villi, while NCGI/gluten sensitivity can have extreme symptoms, there is no damage to the small intestine. Other causes of bloating can be SIBO or small intestinal bacterial overgrowth. The title pretty much says it all and you need antibiotics to help combat that. Basically, your small intestine's bacteria is out of whack and you have more bad bacteria than good. I know there is a test but have no experience with this. You may want to google it and read up on it and maybe ask a specialist about it too? This is something they should be testing for anyway to figure out what is going on. You could also have food allergies, as opposed to an intolerance like Celiac. You can see why this is so hard to figure out sometimes! Are you sure you are completely gluten free? This diet has a big learning curve and cross contamination is important. Please take a look, if you already have not, at this link. It was written by a previous member of the forum and although it is a bit lengthy, it is what you need to know about following the diet and living gluten free successfully. She did a very good job on it! Even tiny amounts in your diet can still cause symptoms. http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/ Have you been tested for vitamin deficiencies or anemia? These could offer a clue to see whether you are malnourished or not. Many people with celiac have both deficiencies and anemia. Between testing for these and genetic testing to see if you carry a Celiac gene might help you to rule it out if you cannot have a scope done. But you do remember that you need to be eating gluten for the scope?
  10. I am trying to decipher the test and it looks to me like the Total IgA is fine. Your number appears to be in the middle of the reference range, which would be sufficient IgA for testing. I am in America so your country's testing is a bit different from here....I really hope I got that right! If you have severe enough symptoms of a GI problem, some doctors here would move onto a biopsy even with negative blood results. I think if you cannot get a full Celiac panel done, then a scope with biopsy should come next. Severe bloating has a cause and they need to rule out a food problem. There can be other causes but food is usually a big trigger. Yes, keep us updated! We are here to help.
  11. beverage.......I have Hashi's thyroid disease and have been on thyroid hormone for years and tolerate it just fine. It's funny that you mention Ashwaganda because my thyroid doc gave me some to try for some of the symptoms I had and it was a disaster. If you read the particulars of it, it can be a GI irritant and it was for me. Every time I take it, I throw it back up within an hour. Makes me violently ill. I also had that experience with other herbs so now? I will not take anything with herbs in it because they just don't agree with me. I don't know why, other than that they can be a GI irritant. I do know people who love the stuff and use it without issue but I'm done with it.
  12. I am happy the surgery is behind you, my dear. My cousin just went through this and ended her chemo in June. She is doing much, much better emotionally and physically and you will too! You will receive good guidance with your options on treatment and I will send you positive healing prayers. Too many women go through this but do really well, long term. Please keep us updated.....we care!
  13. No, not really. I am very familiar with EMA testing and just because it is done and read by an actual trained human being does not make it any less accurate. Machines are only as good as the person running the test. So, the fact that you had a negative EMA proves nothing beyond the fact that any immune system testing is dicey to begin with. Immune response varies so greatly from person to person and this is the reason you have such a wide variety of results seen here on the forum. Many have negative blood work, only to go on to have severe damage on biopsy. There have been many who also have different positives and negatives on their blood panel...it can be all over the place. This is common with ALL immune testing and I know this because my sister is a lab tech who has 40 years of experience doing all kinds of testing. This is why it is so hard to diagnose AI diseases. Researchers are working on other testing that will be more of slam dunk than anything we have now. But the EMA is considered definitive, if the test is positive, and in conjunction with a positive tTg/IgA.
  14. Well....I would say that those are very positive changes! With time, things may improve much more.
  15. Yes, those symptoms are consistent with Celiac/gluten intolerance. Doctors tend to not take people seriously when they don't have diarrhea but I never had it until the very end when I was very sick. Then it kicked in. They tend to lose interest when you say you don't have it and that is a mistake. So, if they ask you that and you say no, then make sure they don't dismiss Celiac. Chronic fatigue is another huge symptom. Your body is not functioning right so fatigue is felt by most with Celiac. I presented the way you describe. I was always very thin but had a bloated belly....not the most attractive look, it is? If you can see a specialist, I would suggest that. But you must be eating gluten in order to be tested correctly. I know that doesn't make people happy but eat at least a couple of slices of bread everyday. I use bread as an example because its such a good source of gluten. After all testing is complete, then you can go ahead with trying the gluten-free diet seriously. You have to be very strict and stick with it for awhile to really see if it is a problem. Hopefully, testing will give you some conclusive results. If you have any questions, we are here to help!