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About Gemini

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  1. 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?
  2. 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.
  3. 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.
  4. 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!
  5. 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.
  6. Well....I would say that those are very positive changes! With time, things may improve much more.
  7. 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!
  8. 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?
  9. 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......
  10. Ohhhhhhhh.....I know that feeling well and I am 57 years old! Sometimes it would be great to just be a kid again with little to no responsibility. If you are feeling a lot better and your symptoms have improved, even a little, then I would personally forgo any other testing for now. That is just my opinion and you do not have to follow my lead. You can always go back and have them done if things go backwards and get worse on the gluten free diet. Seeing as neuro symptoms are HUGE with celiac, I would give the diet some time to do its thing. My neuro symptoms went away completely. It took awhile but they are gone, never to return.
  11. The EMA is usually the slam dunk with celiac. No other disease will cause a positive. In conjunction with the tTg/IgA, that is considered as good of a diagnosis as the biopsy. tTg/IgA misses many people and that is why they do panels of more than one test. both of these are negative, it would appear that you do not have celiac. However, they did not do a full celiac panel. One of the tests included in that is the Total IgA, to see if you are deficient in IgA. That can happen and is somewhat normal in some people. If you are IgA deficient, then none of the IgA antibody testing is valid because you do not make enough antibodies to test for. They then will go to the IgG class of antibodies and do a tTg/IgG test. As none of those were included, I would call this insufficient testing. Do you have symptoms? If so, could they do the biopsy anyway to see if you do have damage?
  12. I think the decision is totally up to you. If you have severe neuro symptoms that you absolutely have connected to eating gluten, then just stay off gluten and see what happens long term. It will take awhile for changes to be noticed, most of the time, so be patient. But if you really feel like there is something else going on, then you will have to have more testing done, to help rule out other possibilities. I know it is a hard choice, especially when you have to pay for some of it out of pocket.
  13. If you were gluten free for 3 months before the blood draw and it still came out positive as you stated, then your antibodies must have been really high before you originally started the gluten-free diet. Too bad the blood work wasn't done then. However, all is not lost. If the numbers of whatever testing they did were in the 30's, then that is a positive for Celiac Disease. It would be helpful to know what tests were run. Cyclinglady is correct in that the levels on your blood work do not correlate to the amount of damage in your intestines. You can have the testing come back negative to barely positive and have a lot of damage done. That is the funny way that the immune system works.....results can vary wildly between people. You still could be showing damage on the scope at this point but I think if it does come back negative, you need to be gluten free. You get really sick from eating gluten and you had positive blood work. If you let them convince you that you are negative for Celiac if the biopsy comes back that way, then you will continue to be sick. I would not continue to eat gluten for 3 weeks just to have a positive scope if my blood work were positive. In fact, I was diagnosed via blood work only because I failed the testing by large numbers (more than 10X the normal limit) and like you, I got violently sick form eating the stuff. 11 years later, I am doing great and feel better than when I was younger. You'll get there too!
  14. You know, you both sound like me. I had vomiting (not every day), extreme nausea like morning sickness, extreme weight loss when I hit the wall with it like your sister. I was already underweight to begin with so it got ugly. After 3 days on the gluten-free diet, my diarrhea stopped completely, without taking any anti-diarrhea meds. I knew I had it before my blood work came back positive. Your family sound like the typical Celiac family so test what you can because you may have just figured it all out. I hate to tell you that I laughed when I read what you did with the Spaghetti-O's. After being gluten-free for quite awhile, I slipped up and ate something without even thinking about what was in it so you see......we all do that. I momentarily had a lapse in reason and forgot I had Celiac and had to check everything I put in my mouth. Years of conditioning in eating without thinking is not easily undone. At least you have an excuse of brain fog. I don't know what happened that I did what I did. I felt so stupid! You will get better!
  15. Excellent! I am happy your family is listening to you and if your sister ends up having it, then that puts you into the high risk category, which might make for a clearer diagnosis, of sorts. The 2 1/2 year old might be a difficult test because it can be hard to get accurate results in one so young. I think the DGP, both IgA and IgG versions, do a better job of catching the younger ones. If not, you can have her re-tested in future. I wish you good luck on all counts and I really hope you feel better soon! I understand your frustration...we all were there at some point.