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NoGlutenCooties

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Latest Celiac Disease News & Research:

Everything posted by NoGlutenCooties

  1. NoGlutenCooties
    Wow... say what?? That's not what I said at all. I said my understanding is that if you do not have either of the currently known genes, then you can still get Celiac. I never said having the gene(s) guarantees that you will get Celiac and I certainly never implied you could "catch" it.
  2. NoGlutenCooties
    I'm not questioning the legitimacy of the research per se... I just don't trust anyone (especially within the medical profession) who tries to say that something is an absolute. Like if you don't have one of these two genes then you cannot under any circumstances have Celiac. They haven't identified every gene yet and there is a lot that they don't know...
  3. NoGlutenCooties
    And we all know how doctors are never, ever wrong...
  4. NoGlutenCooties
    If your main concern is that this doctor may be giving other patients bad information, I would write to her and educate her on her mistake. I had to do this once when a doctor prescribed me a certain drug (I forget now which one) for a UTI and told me to also start taking larger doses of Vitamin C. I looked up the drug in the med book and it explicitely...
  5. NoGlutenCooties
    I don't think that's true... aren't there members on here who were negative for the known "Celiac genes" but diagnosed with Celiac via blood tests and biopsies? My understanding is that not having at least one of the known genes makes you much less likely to get Celiac, but it doesn't guarantee that you cannot get it.
  6. NoGlutenCooties
    As Fenrir pointed out, non-Celiac gluten intolerance is even less understood than Celiac is at this point. However, NCGI folks get to experience most if not all of the same symptoms that us Celiacs do. Many of these symptoms are believed to be caused by the malabsorption issues that are believed to be caused by the damaged villi. But NCGI folks do not...
  7. NoGlutenCooties
    My entire digestive system has always cleaned itself out during the first two days of my period. I always figured it had to do with all the muscle contractions going on in the area and being that everything is sort of connected... the bowels just kinda got in on the action too. (Almost like a monthly spring cleaning.) My sister is the same way and she...
  8. NoGlutenCooties
    You're not alone - the majority of people feel terrified when they first figure out they have a disease - whether it's an official diagnosis from a doctor or not. Take it one step at a time. And as you start to heal and become healthy again you'll start to feel better and it will start to become easier. And once the people around you realize that you're...
  9. NoGlutenCooties
    Hi Raison - What you need to be aware of and to constantly remember is that you have Celiac. It is a disease. When you ingest gluten, even tiny amounts of it, your immune system generates antibodies. These antibodies attack your healthy cells and reak havoc inside your body. When you eat gluten you are killing yourself from the inside out. So while...
  10. NoGlutenCooties
    I use Bare Minerals makeup. Almost all of their products are gluten-free (you can check their website). I don't wear lipstick and I don't worry about mascara being gluten free because I'm not likely to eat it. I like that the mineral makeup is gluten free though because it is powdery and gets in the air. I'm sure a little bit of it is inhaled and possibly...
  11. NoGlutenCooties
    I'm no expert, but your blood work looks pretty good as far as nutrients go - you are a little on the low side for K and Calcium. You may want to consider digestive enzymes and a good multi-vitamin at least for awhile - while your body is healing. B Vitamins are also good for energy and a host of other things - a good B Complex may help you. The good thing...
  12. NoGlutenCooties
    I've always needed 8 hours of sleep a night and would feel terrible if I got 7 or less. Then I'd sleep 11 or 12 hours per night over the weekend to "make up" for "only" getting 7 1/2 or 8 hours of sleep each night during the week. I still feel better when I get over 7 hours a night - but I no longer sleep half the day away on the weekends. It also used...
  13. NoGlutenCooties
    Approximately 30% of the population has at least one of the genes that predispose them to getting Celiac. However, only about 1% of the population actually gets Celiac. There are also people who do not have the gene but do have Celiac. So the gene test is fairly useless. Doing a gluten free trial is the only reliable way to know if you have non-Celiac...
  14. NoGlutenCooties
    Ditto to what they said. I had no symptoms when I was diagnosed but my biopsy showed moderate to severe villi damage. Also, once I got the gluten out of my system and I accidentally got a tiny bit of it I had a bad reaction to it. Felt like having food poisoning. So yes, your reaction to it can definitely vary and get worse over time. But even without...
  15. NoGlutenCooties
    Hi and Welcome! Just wanted to add that if you're unsure about your self-diagnosis and are unable to get tested, stick to the gluten free diet for a couple of months and then test it with a piece of regular toast of something. Do it on a day when it will be ok to spend the whole day in the bathroom feeling miserable. If during the 2 months of gluten...
  16. NoGlutenCooties
    Hi Mary Ann and Welcome! Don't feel like you have to buy all of the gluten free varieties of all of the foods you used to eat. For example, just because you used to eat bread doesn't mean you have to now eat gluten free bread. If you stick with whole foods that are naturally gluten free (i.e. veggies, meat, fruit, dairy if you can tolerate dairy) it...
  17. NoGlutenCooties
    Have you been tested for Celiac? If not, you should undergo testing before going gluten free. You have to be consuming gluten for the tests to be accurrate and if you do have Celiac or Non-Celiac Gluten Intolerance then doing a gluten challenge after being gluten free for a significant period of time is usually painful and for many simply intolerable. I...
  18. NoGlutenCooties
    Hi Ember and Welcome! Wow! You've been through the ringer. Sure as heck sounds like Celiac to me. The fact that going gluten free, even for just a few days, made you feel noticeably better is a very telling sign as well. As for your doctor.... she is... how should I say it.... dead wrong! And ignorant about Celiac. First, there is no requirement...
  19. NoGlutenCooties
    Good luck - please come back and let us know how you make out and what you find works for you. Hopefully others will chime in with other suggestions too.
  20. NoGlutenCooties
    Welcome! (((HUGS))) Just to echo what others have said. You are NOT crazy. This thing is REAL. And if you continue to be 100% gluten free you WILL get better. And your body doesn't hate you... it hates gluten (and possibly a few other foods). Just curious if you've had your thyroid and your nutrient levels checked? Celiac can cause issues...
  21. NoGlutenCooties
    Welcome! IMO, there would be two potential benefits to having the biopsy done. 1) you could potentially get an "official" diagnosis, and 2) they would most likely run a couple of other tests on the biopsied tissue to rule out other possible issues. However... you need to be eating gluten for the biopsy to be valid. Also, they could do the biopsy...
  22. NoGlutenCooties
    You definitely could have been being contaminated by the wheat and barley grass. In their pure form, grasses do not contain gluten. But during the processing it is easy for it to become contaminated. So while some products can contain wheat and/or barley grass and still be labeled gluten free because they test to less than 20ppm, if the product is not...
  23. NoGlutenCooties
    Oats. Both my mom and my uncle have Celiac and neither can tolerate oats. My uncle gets his typical glutening symptoms which include bloat, chills, cold sweats, diarrhea, and vomiting. My mother gets dry, very itchy skin with an itchy/crawly sensation on her back and legs. Given their experiences with oats I haven't touched them since going gluten free...
  24. NoGlutenCooties
    Hi Punky and Welcome to the Forum! I have also been gluten free since Oct. My bloat went away within the first week and only came back for a day or two when I got glutened. I know everyone is different, but have you spoken to your doctor just to make sure there isn't anything else going on? Are you also absolutely sure that you aren't being cross-contaminated...
  25. NoGlutenCooties
    Hi Jamie and Welcome! Your doctor isn't very knowledgable about Celiac. Yes, most doctors prefer to confirm the diagnosis via a biopsy but then they also typically take more than one. You can have a negative blood test and still have Celiac. You can have a negative biopsy and still have Celiac. One can be positive and the other negative, etc. And...
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