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About Gemini

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  1. What she said! The antibody panel is an important part of follow-up!
  2. 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. 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!
  3. 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.
  4. 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!
  5. 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.
  6. 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!
  7. 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. 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?
  8. 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.
  9. 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.
  10. 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!
  11. 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 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.
  12. Well....I would say that those are very positive changes! With time, things may improve much more.
  13. 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!
  14. It took me 3 years to rid myself of all symptoms but I am a lot older than you. As for the treatment you had, I am not sure I would be doing that right now. Let me explain. I am a believer in some things alternative. I do believe in energy work because I am an electronics tech by trade and understand the whole concept of how it works. After all, your neuro system works on energy. It is the body's electrical system. Not all practitioner's are useful. I really think, from my own personal experience, people are born with this talent and it is not something that can be acquired. I have personal experience with a renowned healer in my area, who has since passed away from old age. She was phenomenal and I was a total non-believer when I met her. A friend of mine introduced me to her when I was having horrific TMJ pain, years ago. No one was helping me but I was an undiagnosed celiac at the time, with a lot of inflammation. This woman laid her hands on me and meditated. Not long but I was mystified at what she was doing. I had little to lose so what the heck! Well.....the next day I noticed no was gone. I could not chew gum or eat hard to chew food because my jaw would scream in pain. Yet...the pain was gone. It never returned. I was gobsmacked, as the British say. Could not believe it. This woman had documented cases of complete healing of people who were written off by the medical field...including a local baby who was born profoundly deaf. They told the mother to enroll the child in a school for the deaf because there was nothing they could do. Well.....they visited Charlotte the Healer and after a couple of sessions, that baby could hear and respond to sound like any other. That is documented with the medical people in the town in which it happened. They were dumbfounded. I know what you had done is slightly different than what Charlotte did to me but you get the picture. When you have a negative experience with any alternative medicine, I would not repeat it. If your body went crazy, as you stated, let that go for awhile. You can always resume it when that isn't happening. You pay a lot of money for these things out of pocket so you want to make sure it is actually helping you. I guess what you have to ask yourself is what testing is the doctor wanting to do and what exactly are they trying to rule out? Some of it might provide useful information. But 10 months gluten free might not be long enough if the problem is actually gluten and nothing else. Have you noticed any positive changes since going gluten free?
  15. I have always said that one of the worst things society has done is outlaw spankings and those trips to the woodshed. Bullying was never as much of a problem when I was a kid because you were allowed to take care of the problem yourself, or with the help of friends....which we did. Funny thing about bullies....they are chicken when you get them alone. They tend to travel in packs and do their ugly deeds with others. Then you have those problem parents who think their kids never do anything wrong so its a further breakdown of the whole system. I am glad there was a resolution that worked but you see, it involved threats by the principal which was appropriate in this instance. Those kids need to know what they did was very wrong. They could have killed a kid with anaphylaxis......