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crazycanuck36

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About crazycanuck36

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  1. I too have a reaction to MSG...it makes me ache all over, so I avoid that too!!
  2. ttp://celiacdisease.about.com/b/2010/03/11/new-gene-study-gives-clues-to-how-celiac-disease-starts.htm Here is another study that says they have linked 26 other genes not related to HLA!! This is exciting news!! It's about half way down the article.
  3. http://www.genetic-future.com/2008/03/new-genes-for-celiac-disease.html I couldn't find the one i originally read, but this one says the same thing basically. There are new genes and in the other article, I will keep looking, said that they won't test here for a long long time. I also saw somewhere there are links to Crohn's, so maybe they share a gene too. Who knows. It will be years before anyone gets to the bottom of it.
  4. Thanks Mushroom...I knew I would wear 'em down and bring him over to my side...
  5. I saw the new Gastro today and he was very empathetic. Finally someone who would listen. Unfortunately he wants me to do another biopsy to get a conclusive diagnosis...even though we all know a biopsy does not always come out positive either. However I am willing to do this once more and then if there is nothing, he is at least willing to consider a diagnosis of gluten sensitivity. Either way I will be happy to have a diagnosis one way or the other. It will take months to get in, and I will probably blow up and gain weight on the gluten, but hopefully it's all worth it in the end. Thanks for everyone's support. This forum is truly a godsend and it helps to know that there are others like me out there!!
  6. Well I don't know whether to be excited or nervous because I have another consult with a different gastro doc, who is going to give me a second opinion. He doesn't like to do that, but I think he is curious as to how someone can test pos. for ttg while on gluten and negative while off gluten, but not carry either DNA gene that links me to Celiac. I tried to explain to the secretary that there are 9 new genes found in Sweden that can be indicators of Celiac disease, and I hope because he has been doing this for years instead of months like my other gastro, maybe he has seen more and is more open minded than my first one, who just thinks I am crazy. Why must the doctors treat us as if we are hypochondriacs when the symptoms are there, since childhood nonetheless, and some of the tests are conclusive? It is frustrating..but I am hoping for the best!!
  7. Wow, that sounds like a pain in the butt. It's kind of funny..my kids prefer the corn pasta to the whole wheat, and my 6 year old said to me today, I don't want to eat bread either, so I think I will be changing everyone's diet. My 9 year old gets gas and stomach aches all the time too, like I used to when I was a little girl. It will do everyone good. Leave it to the government to try to make us work for something that is vital to your health.
  8. After a little digging and researching last night, I came across an article from the University of Maryland. Apparently they have isolated more genes that cause Celiac disease, but our Doctors aren't testing for these, because they are used to the HLA-DQ2 and HLA-DQ8. Due to my mother having a rare genetic disorder, and my sister having 3 rare genetic diseases, I have come to the conclusion, that with the symptoms I have on gluten, positive blood test while on gluten and negative blood tests while off, I carry a gene that probably won't be discovered for years, and that today, I have started myself to self-recovery and am giving myself a self-diagnosis as having Celiac Disease. My doctors won't acknowledge it, but for once I will feel healthy and know in my heart that I am on the right road. I feel very liberated. I hope that soon the researchers realize how important the genetic research is to people's health and get the information out there.
  9. Wow, this is all very helpful. I didn't know we could get deductions for the food, but that doesn't really matter to me. I will do what I have to do, because it helps. I return to see the gastro doc in March, so it will be interesting to see what he says from there. My family doc told me that if my DNA was negative there was NO chance I could have it. Doctors really need to re-train, to keep abreast of new findings. I will let everyone know what happens then. I suspect it will be negative, but it's been a strange journey. I also am Vitamin D deficient and have inflammation in my system. Hopefully the doc will do another biopsy, and doesn't see it as not cost effective. Thanks again.
  10. Hi there...I am new to this so bear with me. I am having a very hard time, getting a diagnosis and it't driving me crazy. As of July last year I complained of stomach pain, diarrhea, some vomiting bad gas pains, etc, so my doctor suggested she test me for Celiac. I tested positive for the ttg(mildly), then one of the other antibodies came back positive also. My GP seemed very certain, that because I had two positive antibodies it was a sure thing. I was put on a waiting list to see a gastroenterologist and was told the wait was going to be a year to see one. In the meantime, my Rheumatologist told me to stop eating gluten and then when I got my appointment with the Gastro, that I should start eating gluten 6 weeks prior to my appointment with him. So I quit, and what a difference it made. I didn't have the stomach aches, the diarrhea and was able to drink coffee again, and my acid reflux was subsiding. Incidentally, all of these symptoms showed up suddenly in June last year. I then got a call that a new Gastro was starting up office in town here. So I spoke with him, he ran more blood work, then did a biopsy, which of course both came back negative, due to my gluten free diet. He suspected that I had a false positive blood test. So I went back to eating gluten again, for 3 months. My GP ran a celiac panel again, and it was again positive ttg and it was in the high range, also the other antibody was positive. So the gastro, who is now quite annoyed with me and thinks I am crazy sent me for DNA testing and it came back NEGATIVE, much to my chagrin. What am I supposed to do? I know the diet works, but the doctors say if I don't get a definite diagnosis, they won't accept the diagnosis from me. It's difficult to just say, I don't eat wheat products....because I may have celiac. Is it possible to have negative DNA, but have these antibodies that test positive when you are eating wheat, and negative when you are not. It seems telltale to me, but the doctors, just won't listen. I also test positive for anti-nuclear antibodies, but my Rheumatologist is leery of diagnosing me with Lupus even though I have those symptoms. I just don't know where to turn. I appreciate any advice given please and thank you.
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