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kwylee last won the day on June 17 2011

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About kwylee

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    Art, Photography, Writing, Brain Games
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    Mandeville, LA

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  1. Yes, good to be back. I should never have gotten out of the habit of checking in everyday. Very helpful, thanks so much!
  2. Been a long while since I have posted. Will try to make this as quick as I can. History: I had persistent brain fog 7 years ago and medical doctors and even a neurologist at the time couldn't explain it (no mention of gluten sensitivity to me, much less Celiac), so on my own I had stool sample test that was to gauge if I had gluten sensitivity as I read about in an email one day. This stool sample also tested for related genetics. Well, the test showed I had a highly elevated antibodies to gluten, but somehow also showed that my nutrients were absorbing correctly. At least, this is how I interpreted the test and I thought that meant I did not have Celiac. But I immediately put myself on a strict gluten/dairy/soy free diet (thanks to forums such as this one) and after a period of withdrawal where I felt awful, I began to improve and felt much better in every way. As long as I did not ingest any of the culprits. I was not having stomach issues prior to the diet but as time went by I found I became more and more sensitive to cross-contamination. Today, 7 years later, I still cannot eat out in restaurants in fact I can't eat any food that I do not cook myself and I even start to mildly react after a few days eating any product that is manufactured in a facility that also processes gluten or soy. I don't know if it's even possible to be tested for Celiac at this point having been away from it for so long, nor if that would change anything except make to me an insurance risk. My wish in these past 7 years has never been to go back to eating gluten, dairy or soy. I lost a ton of weight and my blood pressure and glucose is perfect. But I have held on to HOPE that one day I could tolerate at least minimal cross-contamination. Is it possible to test for Celiac today and not do a challenge first, and is it helpful that I have the Genetic testing done (if that's what I actually had)? I honestly do not think I could survive a challenge, because all my exposure over the years is cross-contamination only. I have no idea what would happen to me if I actually ingested a piece of wheat bread or pasta. Do doctors know more now about testing and diagnosis now than they did 7 years ago? Is it possible to be extremely sensitive after 7 years and still not necessarily have Celiac? Are there people with Celiac that can come to tolerate cross-contamination? I've included my test results below (I left off the lab name as it used to be prohibited in forum posts). Did this rule out Celiac, or is it inconclusive for that? I would appreciate any feedback you can give. I'm confused. Not sure what to do at this point, except to keep going the way I have of course. THANKS!!! Date: 6/7/2010 A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value Fecal Anti-gliadin IgA 318 Units (Normal Range is less than 10 Units) Fecal Anti-tissue Transglutaminase IgA 106 Units (Normal Range is less than 10 Units) Quantitative Microscopic Fecal Fat Score Less than 300 Units (Normal Range is less than 300 Units) Fecal Anti-casein (cow’s milk) IgA 29 Units (Normal Range is less than 10 Units) HLA-DQB1 Molecular analysis, Allele 1 0302 HLA-DQB1 Molecular analysis, Allele 2 0301 Serologic equivalent: HLA-DQ 3,3 (Subtype 8,7) Interpretation of Fecal Anti-gliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well. Interpretation of Fecal Anti-tissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity. Interpretation of Quantitative Microscopic Fecal Fat Score: Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal. Interpretation of Fecal Anti-casein (cow’s milk) IgA: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test. Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe
  3. kwylee

    What Else Are They Missing?

    Bartfull, your rant is right on the money, totally agree. You call to mind that the days are over where doctors are panoptically lauded as some sort of information gods. Yep, I grew up that way back in the 60's - your medical doctor had all the answers and whatever they said was taken as gospel. Until I saw enough of them in the 21st century who denied simple logic or brushed off my intelligent observations about my own body or what I was experiencing, merely because they had not read the symptom or disease in a medical book that could have been written eons prior. Or worse, because they were afraid to go against the medical establishment. After countless visits to the doctor without answers, I made the gluten connection on my own, and then pursued testing. While in the meantime, doctors were still stuck on the useless "stress, hormones or menopause" schtick some go to when they can't admit they haven't a clue. But hey, I'm not anti-doctor. I am convinced there are good ones out there, the best of which no longer subscribe to their own hubris as substitute for effective medical detective work that keeps up with the times. Those are the gems. And hypochondria aside, it's up to us to know to keep looking when our gut tells us the doctor may be totally off-base. While I understand that doing your own internet research on health symptoms can yield cholera in the face of only a rapid heart rate, we should get used to the garbage-in/garbage-out method of taking responsibility for our own health and well-being, and get yourself to a humble doctor when you need a similar resource....or to stitch you up when you split your lip.
  4. kwylee

    Two Questions About Going Grain-Free

    Buckwheat is actually a seed, but if that is what you are reacting to, it proves the undeniable point that if your body doesn't like it, you'll know it. I second the notion of the food diary.
  5. Another alternative is clarified butter (ghee), which is butter with the milk proteins removed. I am very sensitive and find I can tolerate that just fine and I like the taste even better than regular butter. Excellent for baking too, as my gluten-free/DF/SF choclate torte will attest. Purity Farms is certified casein free ghee and happens to be the one I can get my hands on most easily.
  6. kwylee

    Eating Gluten Again?

    Horsehandsss, I felt dizzy and "off" for years before I stumbled onto the notion that what I was eating could have such a horrendous effect on not only my health, but my attitude, optimism and total feeling of well being. I never had a panic attack before I was 48, but I can vividly recall the intense feeling of dread that came upon me that day. I was luckily at home from work (dizzy and sick, as usual), and suddenly I felt like I was about to die and - nothing- could have convinced me otherwise. After about 15 minutes the initial feeling passed but I was sure I wouldn't leave the house ever again. After that I was dizzy for another 7 years or so before I put it all together, even though I was eating "healthy", no fast food, etc. I'm a firm believer in food and/or environment as the direct cause for most human disease and bodily disorder. I don't know your level of expertise in pinpointing possible cross contamination or hidden ingredients in food labeling, nor your dedication to such things. I'm not sure from your posts what you are eating on a daily basis, what doctors you may be consulting, or medications you are taking, but anyone can gather from the tone of your emails that you are in angst. I know how it is to be sick and feel hopeless that you'll never figure things out. The good news is that if your health and well being woes are being caused by something you are ingesting, be it food, drink, or otherwise, and you truly have a desire to be well, then the solutions may take a bit of detective work on your part, but the answers are already existing and ready for you to uncover and implement.
  7. kwylee

    Eating Gluten Again?

    I don't think you'll get many tips here when it comes to reintroducing gluten but that's not because people don't care. They do and that decision to start putting gluten into your body again could be a major step backward for you. Before I say anything else I want to clarify that a negative test or biopsy for Celiac Disease does not mean your body is not reacting to gluten. All my tests were negative but doctors agree I am clearly reactive to gluten and soy, and to a lesser extent, dairy, and my symptoms of occasional cross contamination are part intestinal at times, but always neural, as yours seem to be. But I don't believe this because a doctor told me. I know this because of how stellar I feel when I do not ingest these things. Your body is screaming at you, please take a breath and listen to it. The fact that you're still feeling poorly seems to indicate that there may be another intolerance. Or perhaps you are still being cross contaminating with gluten. Taking gluten out of the diet means all gluten in any trace. Your body wants to return to health, it's natural state. But you've got to give it a proper chance of success. If you have additional questions on how to maneuver the road ahead and trying to pinpoint what is causing your pain and anxiety, this forum is a great place to be. Ask now.
  8. Have you considered that it may not be the lactose (milk sugar) that you are having problems with on the dairy issue, but the casein (milk protein)? I had a similar problem when I first started. I was strictly gluten free so couldn't understand why I felt so poorly - for me mostly neural disorders. I stopped ingesting dairy and then even soy and that's when I had the breakthrough amazing results. If you're past the withdrawal stage (feeling worse before you feel better) after eliminating gluten, then you may want to consider eliminating dairy altogether for now to see if you feel any better. But I want to mention that typical butter, cheese, cottage cheese, ice cream, yogurt, sour cream, etc., contains casein. The other culprit for me turned out to be soy, which was making me just as sick as gluten and dairy. Read those labels and note that some SmartBalance contains soy. I'm no scientist, but because my symptoms were the same for gluten, dairy and soy ingestion, it would appear that my body was interpreting each of those protein molecules in the same way. From what I understand, it's very common. And if it's not found to be dairy or soy, then there are other food group intolerances that may be causing you continued trouble. But it's liberating to finally wheedle down to what it is so you can feel great everyday of your life. Also, keep in mind that while you'll never be able to tolerate gluten, many who give up dairy (and soy) find they can reincorporate it into their diet after some months.
  9. EXCELLENT INFO!! Thanks so much!!!
  10. Thanks for the input and so sweet of you to ask, but I'm OK. My question is purely research. But it has made me wonder about eating boiled eggs from a pan of questionable cc status.
  11. Yes, you are absolutely correct! The size of gluten molecules must play a big part in this, but I wonder if the gluten molecules could possibly be carried through by osmosis even if the water molecules could not??? Clearly, I'm no scientist! But thanks for that link. It got me thinking that perhaps I could do a test with food coloring in the water and hard boil the egg. If no coloring comes through in an uncracked egg, then perhaps nothing else go through? Hmmmm. Like I said, I don't want to eat it. I'm writing a novel and I'm kicking around a possible metaphor. Thanks so much for letting me pick your brains!
  12. Thanks so much! I'm actually asking less for culinary purposes and more for research for something I'm writing. But I guess it would be a good thing to keep in mind if you're traveling. And, no - please don't worry about offending me. I have a pretty "hard shell" - OK, my feeble attempt at humor.
  13. I'm doing some research and have a question. If someone hard boil eggs in a pan that may contain traces of gluten, e.g., boiled pasta previously, could that cross contamination be absorbed into the inside of the shell to the egg? I would certainly expect cross contamination to be possible on the shell, but I'm wondering if anyone knows whether the egg shell is porous enough to allow the gluten into the uncracked egg itself?
  14. kwylee


    OK, at the risk of sounding nuts, I'll share the following: I've had that, and the burned tongue feeling eventually turned into a bout of CONSTANT dry mouth feeling that drove me crazy and lasted for months. Everyone kept just insisting it must be Sjogrens but tests were negative and I didn't have any other symptoms. It's under control now and only flares up occasionally but I've definitely seen the correlation between the mouth/tongue discomfort and my stomach, specifically low stomach acid. In fact, sometimes I wonder if that's what's behind the mysterious "syndrome" of Sjogrens, which my doctor says they call anything they just don't understand and therefore can't "cure". I searched for months, and in the end I tried a natural tonic I read about on the internet and within a day or so the symptoms were 95% gone and my "off" stomach issue was totally resolved. I still do it these days but just a few times a week. I'm like you, no gluten/dairy/soy and only whole foods. This tonic fills that bill: 2 TBSP Natural Apple Cider Vinegar (with the mother - like Braggs) 1/4 tsp Baking Soda 8 oz water raw honey to taste (optional - the ACV/BS combo is actually a bit sweet on it's own - you don't need much honey, if any) Back then, I would drink this just before eating breakfast, lunch and dinner. I think the tonic is more to help the body achieve a healthy pH. These days I've substituted seltzer for my water in the drink and it's like enjoying a softdrink (without all the known carcinogens of canned fizzy drinks). Worth a try!
  15. If your goal is to be able to go to the banquet and not have to lug your own food, why not call and speak to the chef? Perhaps the best thing to do would be to make a clever suggestion. I do agree with the logic that they should be up to snuff on food intolerance issues, but unless they are, I wouldn't want them to pretend with me as guinea pig. You did an admirable job of explaining to them the possible pitfalls of how they could possibly make you sick. But those pitfalls are second nature to you, not them. You have presented them with a problem but you also know the solution. Clearly, they do not.