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Everything posted by sandree

  1. I also wanted to acknowledge that I agree that celiac disease is not curable and can only be treated with a gluten free diet. Other food intolerances may have other options, but celiac does not. Thanks, Sandy
  2. Thank you. I will explore the FODMAPS. I agree that combining medical/scientific research with homeopathy is beneficial. It can and should all work together. Sandy
  3. Thank you, Ninja and Lisa. I will copy this information. That was very helpful. I am not much of a conventional medicine believer so I think I will stick with my gluten free diet and my homeopathy. I have not been eating enough gluten to have the testing done and I react severely to gluten so eating it for several weeks is not an option. In homeopathy, we base treatment more on the symptom picture than the medical diagnoses. What I see in my case, is several different causes for my issues, including genetic, emotional and toxin issues. Healing this homeopathically is like peeling an onion. I think I was holding out hope that homeopathy could cure the celiac part of the picture because it is capable of healing an amazing range of issues. But there are limits and genetics is one of them. I believe it can heal something that is caused by a change on the epigenetic level but that it cannot heal something of the inherited genetic type. From what you say and from my reaction to gluten, I am going to assume at this point, that I have celiac disease unless something else strongly indicates that it is gluten intolerance. I am going to continue to be vigilant about the gluten. Lisa, I read something else on here about histamine intolerance and weight gain. Maybe that was from you? It helped me a lot. One of the other remaining issues that I have is a very stubborn weight problem. I think this could be a clue to that, so I thank you for that. I think I may have a remedy that I can take to address that, so we will see how that goes. If I can find a remedy instead of a food solution, I would rather do that than limit my diet more... Thanks so much, Sandy
  4. Hi, I was tested in 2006 through Enterolabs and have been gluten free since then. I just recently looked at my results again and realize that I don't really know what this means as far as the genetics. Could someone help me understand? How do I know how many copies I have of the genes? What would this combination of genes suggest about the likelihood of celiac for myself and my siblings? My children are adopted so I don't need to worry about that. I have not had a biopsy and the blood test was negative at that time. I think I have been in denial that I probably do have celiac and not just gluten intolerance. I am a homeopath and I have had other autoimmune issues and a huge amount of heavy metal detox I have been working on. As those have cleared up, it has become more clear that my remaining symptoms are gluten related. It has become more clear how strongly I react when I am glutened. So I am just trying to figure out the likelihood of this being celiac. I believe it is and that homeopathy will not be able to "cure" it. Though I have found a remedy that seems to help me get through glutening faster. If anyone is interested, I am happy to share. My results: HLA-DQB1 Molecular analysis, Allelle 1, 0201 HLA-DQB1 Molecular analysis, Allelle 2, 06xx Serologic equivalent: HLA-DQ. 2,1 (Subtype 2,6) Thanks for your help, Sandy
  5. Well...it is possible that I was glutened by something else. That's the hard part...figuring out what the heck caused the problem. I'm still not gonna lick 'em! Sandy
  6. I accidentally licked a large manila envelope yesterday. For some reason, this is something I just can't remember not to do....it is so automatic. I immediately realized that I shouldn't have done it...but...too late. My tongue felt a little tingly yesterday. This morning I looked at my tongue and there were two large fissures in my tongue and it still feels kind of numb, tingly. Also had a headache today which is really unusual for me. It is hard to believe that I could this could happen from just licking an envelope...but it seems that it is so. I'm sure hoping the strange holes in my tongue will heal up with time. Anyone have this kind of experience? Sandy
  7. Thank you so much for your replies. I will take it easy on myself and not expect so much. Will also talk about Lyme disease with the dr. when I see him. Thanks again, Sandy
  8. Hi Everybody, I am relatively new to this. Diagnosed gluten and casein intolerant through Enterolabs with a celiac gene and a gluten inolerance gene. I think I am being very careful about what I eat but I am frustrated with only seeing intermittant improvement in my symptoms. It has been about 5 weeks on the diet. I have had chronic hives for over 2 years. They are improved but not entirely gone. My poop has improved (sometimes) but often is the same (pudding poop) as it was before removing gluten/casein. I have sore muscles/joints (especially sore feet) and that gets better occasionally but is mostly still the same. I am very tired by the evening...just completely run out of energy. I think I have seen the most improvement mentally...feel more clear and less anxious though that is also intermittant. My tongue has been slightly white for years and that also clears only intermittantly. I wonder if I am being impatient or if there is something else that is not right here. I know I have very low Vit D levels. I have been taking Vit D supplements for a year and my level has gone up a little bit. I will be going to see an environmental medicine md after Christmas so I am hoping he can shed some light. Just thought someone might have had a similar experience. I wold love to be able to point out some clear improvement to my husband who is still wondering whether this great upheaval in our lives with eating, cooking, etc. is really making a difference. Sandy
  9. Thanks so much for the pep talk. I went to the party and enjoyed myself. Ate beforehand so I wasn't tempted at all by all the food. It is actually really nice to go to a party and come home without that "bloated, feel lousy" feeling that I am used to. This is a really interesting journey and I am experiencing changes in much more than just the physical realm. Sandy
  10. Hi Everybody, I have been on a gluten free/casein free diet for about 5 weeks now. I am still trying to get the hang of this. I went out to eat with a friend and found myself half way through my salad before I realized that I was eating croutons. Have not been feeling too good since then and it was about 4 days ago. I think the rest of the meal was OK...grilled pork chops, oil and vinegar for salad dressing and steamed vegetables and apple sauce. Does anyone have suggestions of what to order when out to dinner? Is it better to ask for meat to be grilled or broiled? I live in an area that is not very diet conscious...even a vegetarian diet would be considered odd around here (I live in PA Dutch country ). When I have tried to talk to a waitress about my diet, they always look a bit blank and then say they understand but I know they really don't have a clue. Tonight, my husband's daughter is having a Christmas party. I just realized I have to negotiate this too. She has a side business baking cakes and pastries...sheesh! I would at least like to be able to walk around with something to drink (I don't drink alcohol). Maybe a soda would be OK? She will probably have a veggie tray and maybe some fruit. This same daughter made me a flourless chocolate cake for my birthday last week and I ate it but kept wondering if it was really OK. I think I am having trouble with feeling "weird" because I have these limitations that no one really quite understands and having to stand up for myself...which has always been a challenge for me. As far as I know, I am gluten sensitive and not celiac but I have definitely had a bad reaction when "glutened" and I am determined to stick to this strictly because I have been feeling much better...when not glutened. Thanks for listening! Sandy
  11. Thank you so much for your replies. I think this is as much a mental change as a physical one. Just trying to accept that my daughter and I need to be on this diet 100% and that I need to advocate for myself and for her. This all started with trying the Gluten-free Casein-free diet for my daughter because one of her teachers suggested that she may have aspergers syndrome. She responded very well to the diet and we are going to start some sensory integration therapy shortly. Anyway...I feel like I am grieving the loss of foods and also my vision of myself as this really healthy person (even though I have had chronic hives, loose stools and unexplained muscle pain for about three years...denial is a powerful thing.) Thanks again...got the separate toaster. Now I need to tackle the 11 year old who trails crumbs after him like pigpen in a Charlie Brown comic. Sandy
  12. Thank you for your replies. I am going to print out this thread to show to my husband. He doesn't really believe any of this. He has seen me not eating this and not eating that for years (trying to figure out what was wrong with me). So - he probably just thinks it is another phase I am going through. I, too, am trying to wrap my mind around all this and I really appreciate your experience and help. Sandy
  13. I have recently discovered that I am gluten and casein intolerant. (Will put Enterolab results below.) I still need to prepare meals for my son and husband with wheat as they are not ready to eat gluten free. My question is this. Can I prepare, for instance, a bagel for my son, and then wash my hands after I'm done and be OK? I'm not clear on whether I am supposed to avoid touching the bagel...or if it is the danger of touching the bagel and then licking my fingers later?? I believe the Enterolab results cannot really tell me if I am celiac (even though I have a celiac gene) but they do show a gluten intolerance. Do you think I am understanding that correctly? In order to confirm whether I am celiac, I would have to have a biopsy or some other blood tests (that would be inaccurate because I am eating gluten free), right? If it is a gluten intolerance, do I need to be as vigilant about cross contamination as if it were celiac disease. As you can see, I am still kind of confused about all this. I am definitely feeling some positive changes in my body since cutting out the gluten and casein...just want to continue to learn more about the details of how I need to carry on. Thanks so much for your help, Sandy Enterolab Results Fecal Antigliadin IgA 21 (Normal Range <10 Units) Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units) Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units) Fecal anti-casein (cow’s milk) IgA antibody 19 Units (Normal Range <10 Units) HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 06xx Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)
  14. Thanks, everybody. I will start my new diet and hope to feel some good changes in my body. It is certainly worth it, if I see changes. I have been living with my strange quirks and symptoms for so long, it will be interesting to see if they clear up. Sandy
  15. I got my Enterolab results. I had the test done because my daughter (adopted from Korea) is in the process of being evaluated for Aspergers Syndrome. We put her on a gluten-free diet because of stomach pain and gas. Her blood tests were inconclusive because she was already gluten-free for one month when they did the tests. Dr. asked to challenger her. I tried and she was so miserable that I couldn't do it for long enough. She is defnitely responding to the diet. I have had some ongoing problems which made me suspect I might have food problems. I did the Enterolab test and got these results today. I guess I was not expecting to see the celiac gene there. Does the presence of a main celiac gene mean I am actively celiac or just that the possibility exists that I could become celiac? Several years ago I had the blood tests done because of stomach pain and they were negative. I also had a colonoscopy which was normal. The casein is also elevated. Sheesh...I just about live on cheese. This is going to be so hard... Anyway...any light you could shed on these results would be most appreciated! Thanks so much, Sandy Fecal Antigliadin IgA 21 (Normal Range <10 Units) Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units) Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units) Fecal anti-casein (cow’s milk) IgA antibody 19 Units (Normal Range <10 Units) HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 06xx Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)
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