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CMCM

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by CMCM

  1. My mother was diagnosed (after nearly dying!) in 1967 at age 46. At that time it was challenging to be gluten free because there weren't any gluten-free foods at that time. She would buy rice flour at Asian markets and make baked goods the best she could. She just ate natural fresh foods and almost never ate out, and she was very healthy her whole life...
  2. For much of my life, despite having a mom with very severe celiac disease (she found out what she had when I was 17), I always thought my digestive issues were due to dairy. I had dairy problems from infancy, and have not really liked to eat much dairy my entire life, I instinctively avoided it. My mom was violently sick any time she got an accidental exposure...
  3. There seem to be a couple of ways to state gluten dangers. One is "made on shared equipment" with gluten products, and that one is a definite NO. The "made is a facility" one is something companies do as a CYA when it's not a dedicated gluten-free production facility. There's always risk, but I don't have issues with this one and neither does my very sensitive...
  4. Here's what happened with my mother. This was in 1967 when she was 46 almost no doctor knew about celiac disease. She was unable to keep food down and her weight had plummeted to 89 when she finally met a doctor who instead of telling her it was all in her head, he asked if she had been tested for celiac disease. He did an endoscopy and saw the evidence...
  5. I find this kind of information useful and interesting. As an infant I could not tolerate cow's milk at all, and eventually I did better (but not great) on goat's milk. But I always had trouble with dairy and I never wanted to drink milk, eat ice cream, cheese, etc. I just knew to stay away from it. My mother wasn't diagnosed with celiac until I was about...
  6. "4. I feel like every time I would eat gluten free foods such as breads, cookies, pretzels they would give me worse stomachaches than when I was eating gluten Is this odd? It has made life harder for me because there are all these gluten free alternatives but I have been staying away from them. My doctor was surprised when I told him before I started being...
  7. You could be correct. I guess it all depends on how much you feel compelled to have a definitive diagnosis....or not. Also worth considering is that the villous atrophy they are searching for in the endoscopy could be missed because it tends to occur in patches. I'm assuming gluten makes you sick in some (or many) ways....obviously, eating...
  8. Good grief, so sad to see there are still so many clueless doctors out there. Keep eating gluten, and like others have said, I'd suggest immediately ordering the imaware celiac test suggested by Scott as it's cheap and easy. I recently ordered that test myself. I got the test and sent it back and then got results within about 10 days. After you get your...
  9. Do you think either of your parents had issues caused by gluten, if not celiac disease?
  10. Thanks....I'll read this article in detail, looks like a lot of good information. I don't have depression issues myself (someone else around here brought it up), but I'm trying to figure out which vitamin and mineral deficiencies I might have. My son (celiac) DOES have longstanding issues with anxiety and depression, though, so I'm always looking for things...
  11. I don't remember a lot of details and I was only 17 at the time, but I'm sure there wasn't any sort of diagnostic celiac blood panel back then. And no gene test either. I do know she had an endoscopy to diagnose it. After a parade of doctors over several years who were utterly clueless about what was going on with her, it was her great fortune to encounter...
  12. Thanks Posterboy! I just ordered a bottle of M. Glycinate....a good one, I think. I look forward to seeing how well it works for me. I am "mostly" rid of leg cramps just from taking the Slow Mag I take, but I also researched a bit after I wrote my comment to you and I see that the Mag Chloride I'm taking isn't the best one or the best absorbed, even though...
  13. I found dairy to be a major culprit in the joint pain and muscle aches I had. Most of my digestive issues were considerably better after 2 to 3 weeks. I am currently at nearly 16 weeks gluten, dairy, corn and sugar free and the joint pain is considerably better, but not yet gone. I hope it will eventually fade away completely, but I guess you can't ever...
  14. Posterboy....you keep specifying Magnesium citrate and glycinate....have you read about those two particular forms of magnesium being best for this? I've had a lot of digestive issues with magnesium in the past, not sure which ones I had tried but it was several different ones, but finally I tried one that is slow release and I haven't had issues with it...
  15. Long ago, my mother almost died before she was diagnosed with celiac disease (1967!!). She was extremely sensitive to even the smallest amount of cross contamination, and would get violently sick in such cases. For this reason, she rarely ate out as it was a real minefield for someone as sensitive as she was, and in the beginning years after her diagnosis...
  16. Dairy intolerance in particular is often found along with gluten intolerance. Like you, I have dairy intolerance (sensitivity to the milk protein casein), which I've had since birth, and I also have fructose/sugar intolerance, and at the very least gluten sensitivity if not celiac disease. I've had several celiac panel tests at varying times, both negative...
  17. Gosh no, I don't see any sort of "rift". I've come to view gluten sensitivity as a very broad spectrum of reactivity to gluten. Gluten sensitivity is the big umbrella, so to speak. Spread across this wide spectrum are a multitude of possible reactions to gluten. One particular reaction on this spectrum is designated as celiac disease, which is specifically...
  18. Welcome, you have arrived at a great place to read and ask questions! What a trip you have been on with your health.....a story that will not be surprising to many of us around here. Getting a diagnosis of celiac disease or even gluten sensitivity as a cause behind so many of the symptoms you describe is said to still take an average of 11 years. This...
  19. Ricky, good job on the dietary approach.....even with a solid celiac diagnosis your current diet would be the solution anyway. Whether you have actual celiac disease or whether it's gluten sensitivity without celiac, diet is the solution and the "cure", so to speak. As you have found, gluten isn't usually the only problem and it becomes a matter of tracking...
  20. My grandmother died at 99. I don't know if she ever had active celiac disease, but I do know she had a celiac gene because my mother ended up with two copies, and therefore, one had to have come from her mother. My grandmother had very bad arthritis by the time she was in her 80's. I will never know if that was connected to celiac disease, and I don't...
  21. I suspect a lot of people eventually discover that gluten isn't the solitary cause of their symptoms. They identify the gluten problem, go gluten free, think the problem is solved, and then they don't get better. Eliminating just gluten often isn't enough. The dairy protein casein can cause a sensitivity that is frequently found along with gluten...
  22. Hi again! I think nerve pain and neuropathy is a hard thing to pin down. In retrospect, I think I "felt" the beginnings of it back in the early 2000's, just on the bottom of one foot, just one spot. I noticed it while exercising...it kind of felt like the sock in my shoe was a bit crumpled up, but that wasn't it. Anyhow, things didn't really get annoying...
  23. I'm sad to hear of all your problems and I feel for you. I will just say that perhaps you have a LOT of sensitivities all interacting together, and perhaps a very limited and bland diet free of typically problematic foods could help you heal eventually. I have a lot of food issues....gluten, dairy, corn, soy, certain vegetables and fruits, and more. I...
  24. Genetic testing is NOT going to diagnose anything. However, it's good knowledge to have if you have determined that gluten makes you sick and not eating it makes you better. However, it's a real rabbit hole and can be a money pit trying to get a diagnosis such as was "required" in the past (i.e. positive blood panel followed by a positive biopsy). Sometimes...
  25. I suspect very few GPs know about celiac. Even some gastroenterologists (who you would think WOULD know about it) are uninformed. It's really hit or miss finding someone who knows more than just sketchy information about gluten sensitivity and celiac disease. My own GP has been very honest and frank with me....and she told me at this point, I know more...
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