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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About coldnight

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  1. Depends on the prescription, but $80 sessions once a week for several months adds up fast. Usually to a lot more than a year's worth of a normal prescription, if you have insurance. Unfortunately insurance usually doesn't cover things like NAET. Also, there is a difference between anecdotal evidence and scientific evidence. Anecdotal is that it seems to work for a lot of people, but no one knows why, or if it works the way they think. Or maybe it's just placebo. Scientific can be observed and repeated and a lot of effects are known, how and why. Like depression medication, it is known how it works for the most part, and why it causes those side effects. Another thing is, from what I read NAET is really not that old. Acupuncture is, but NAET is making different claims than acupuncture really. And the logic behind it based on qi flow and meridian lines, spiritual things that cannot be proven.
  2. Other Intolerances

    This sounds a lot like me. Rice is fine, sugar is fine... those carbs. Other carbs are not fine at all. I usually stick to meat and rice. Occasionally banana... corn chips as I said, on occasion, they will make me sick if I eat too many. As will most carbs. I would really like to find out if you find some place that sells amylase or whatever you get that you think helps. It seems like the complex carbs do not digest well at all. Meat is fine... seems to be one of the few things that doesn't bother me. I like what you said about the way corn is farmed too, in Michael Pollan's book he talks quite a lot about the nutrients lacking in food, compared to say.. 60 years ago. He references something that says one apple from the 1940s is equivalent to 3 apples today in terms of vitamin content and such. Because everything is mass produced in the cheapest way, and very little is returned to the soil. That part resonates... I think it's possible, at least for me, that I have been damaged over a long period, suppressed it heavily with motility slowing agents, and probably should have went to a basic simple diet years ago, now it's hard to find anything that doesn't cause me some distress. I tried betaine too, I don't think that's my problem, I had heartburn. =)
  3. Other Intolerances

    Not to say misery loves company, I wish you all felt better, but I kind of felt like I was alone. Gluten kills me, I have no doubt about that. But a lot of other things are pretty miserable as well. I've been able to get off my medicine for weeks at a time, but one wrong thing and bam, sick again... not as sick as gluten sick, but sick for several days, requiring some medicine, although 1/30th of what I was taking on a daily basis before. I think Mother of Jibril gives really good advice, and has helped me a lot thus far. Like when I was trying to add in some vegetables and kept getting sick, had no idea bell peppers were nightshades. It makes sense, tomato paste in gluten free bbq sauce does not bother me, raw tomato does. I think I'm just going to have to accept these limitations as long as I have them. I hear you Thleensd, plain food is alright, but it's hard to remember all the stuff you can't eat. I'm not dx'ed, it may just be intolerance for me. You however know, so... one assumes you have intestinal damage? From what I have read, it may take 6mos to a year to repair. You may find you are not as intolerant after that, perhaps keep to the simple stuff for long enough, and give your body time to heal? Meline is right, the best way to do it, for me this has worked alright so far, is just go very basic, get to a point you know is safe, and slowly add in foods, one at a time. This was the advice from my allergist, no allergies here either. Keep a journal of the food, as it helps. Hopefully you can build up a repertoire of things that do not bother you, and then you can try things later on. I have found, for instance, I can tolerate gluten-free corn chips, in moderation. Some things I just can't eat every day. Salsa, is always bad for me, always. I have never eaten it and felt alright. I'm stupid though, and I keep trying it again. I should make my own tomato-less salsa or something. I think it just depends on your specific symptoms, I want a chart too. I want someone to tell me exactly everything I can eat that won't make me sick, but no one knows. It's just a process of trial and error. I wouldn't suggest getting attached to any serious stomach calming medicines, because they have been rough for me to get off, but maybe something for the real bad times, imho, something that doesn't have ibuprofen, aspirin or tylenol. And maybe give your body a little time if you react badly to something after 3-4 days before you try something new. I think only a journal can help you do this. It's a horrendous pain... but I think a lot of us are feeling it with you.
  4. I had been considering acupuncture, because I'm just getting fed up, better, but still in limbo, and it's one of the last things I haven't tried, besides SCD or something like it, which is probably up next. Anyway, I read about NAET today, the history was, according to the site I read, an acupuncturist got sick when she ate carrots. So one day she accidentally ate them, and got sick, and did acupuncture on herself, while laying on some she had dropped, and voila, she could eat them again. The assumption being while healing her qi flow, or whatever, with the carrots, her body would now accept them. I don't knock acupuncture and mystic explanations of very old things out of hand, because although not scientific, humans have had thousands and thousands of years to work out trial and error, but we also have a tendency for a strong placebo effect in some cases. Even thinking we are lactose intolerant when we are not, and thinking we are cured when someone pokes us and says we are. So, I don't want to call it bunk out of hand, but this is the primary reason I've not been. The price, and the real lack of science. For instance, I know a couple people who went to a local acupuncturist for severe asthma, and they claim it cured them, no inhalers, just took herbs and did acupuncture. But it's more than I can afford, especially the time from work, and they really wanted you to come for a LOT of sessions. (Like once a week for two months... and then some, at $80 per, it adds up, plus it's a day of work lost too, it REALLY adds up.) Anyway, I thought about my little brother who had some nasty asthma when he was around the same age, like ER visits, nebulizer, waking up in the night not being able to breathe... at about the same time they were cured, it just faded away. He never saw an acupuncturist, it just went away. He works out like a fiend now, runs... etc. No inhaler or anything. So, I'm wondering how much of the original story was just coincidence. At any rate, like I said, I hate to dismiss it, but I think I'm going to. It's too expensive and you shouldn't have to have faith... you should at least have a basic understanding of why and how it works. Otherwise the onus is on the one making the claims to prove it does, which they don't even attempt until you pay them lots and lots.... which is not a good sign.
  5. Gluten Addiction

    Do what my parent's always used to say "You aren't hungry, you're thirsty. Drink some water." =]
  6. Yea, that sounds like me. I only ate meat and rice for 2 months. (with Kraft BBQ in place of soy). Now I can handle a little corn in tortilla chips, but the rest I don't eat. Not nightshades, raw vegetables, a banana occasionally, no dairy, no soy, no other grains. I feel a lot better, slowly. I've been able to drop off all the medicine I was taking, which was a lot, I was just wondering how long it took you guys. For me it's really hard to tell if I've just dropped off medicine too fast, or something else is going on... but being off gluten is definitely a large improvement. Just wish I knew exactly why, but don't want to do a challenge, so I guess I'll just wait. =)
  7. Thanks again for the info, one more question, how long did GI distress persist? And did you ever take any medicine for it, like were you diagnosed with IBS and take some medicine for that? (I ask because I'm having a hard time figuring out what is possibly healing versus withdrawal versus maybe just some fluctuation and a problem with carbs in general.)
  8. Curious... did either of you have GI symptoms? Even though you lacked apparent GI damage? Also, how long did it take for you to recover after eating gluten for a prolonged period? And how long does it take you to recover if you accidentally eat some? Thanks, I don't want to do a challenge for sure, it was too much trouble getting off gluten. Still trying, recovery has been very slow, but very promising... just based on the very few meds I take now. Anyway, thank you for any information, I am curious and impatient about how my own recover might work, I'm not a year in, just several months.
  9. It usually helps me, I think the upset it causes, for me anyway, is the 500mg of tylenol in it. (It's funny at work I often hear people talk about being on 500mg of lortab... it's usually 5/500 or 7.5/500.) My codeine is T3s or T4s, so 30 or 60mg of codeine per 500mg of tylenol, and I usually take two, that's a lot of tylenol, probably not terribly good. For a very short time I was prescribed just codeine, no tylenol, the pills were tiny and round. I don't remember it having the same rebound effect. Of course, I took T4s for years, at least 2 a day at 120mg, so the rebound only happened when I cut down.
  10. I cannot find any hidden gluten in my diet. I check everything as much as possible, on the web, call them. I've been eating a very limited diet for a few months, and it has helped, but I still feel pretty sick at times. I'm hoping that is just coming off the lomotil, today I feel terrible, I'm not sure if that's still lomotil, or just ebb and flow. Anyway, yea, I've missed some doses of klonopin, it's kind of crazy, mind races. I'm saving that for last, it doesn't seem to have a huge GI effect, and I don't want to try to step off two things at once. Anyway, sorry to complain... today is going to be terrible though, i feel rough. Feels like trying to quit smoking, depression maybe, not sure... just general bad mood and ill stomach. I think this is still the lomotil/codeine, I wish I knew how long it lasted. From what I understand it takes a long time to build up tolerance, at least in the intestines, to opiates. I've heard it related to the pupils, even someone who has taken them for a very long time will have small pupils because the tolerance builds so slowly there. I hope that doesn't mean the reverse takes just as long. --edit-- one more thing, have you ever heard of people fasting? Just to give themselves a break? I think I know what I did, think I ate too many tortilla chips. I've been eating them fine, but I think it's just too many days in a row, but who knows. I'm tempted to just fast for a couple days, not sure if that is common?
  11. Yea, that sounds pretty similar. Soy bothers me, even la choy which is supposed to be gluten free. So do tomatoes, I assume it's the nightshades. But that may be because healing is still going on. I guess the key is just to wait. It's not been too long since I dropped off all the medicine, Klonopin is the only thing I take. I've checked the vitamins and the probiotics. I seem to be getting gradually better, it's just sooo slow. I never thought there would be a point in my life where I was not tethered to lomotil and codeine or morphine or something like that again. Just now that I think I have figured it out I want to feel normal IMMEDIATELY. =) Patience I guess, is what it's going to take. I actually feel somewhat better now, I think lomotil causes some withdrawal, I still have constant running nose and feel feverish. But I know I'm not sick, this has been going on for as long as I've been stepping off the opiates. I can't find anything that really says how long this should last. It's hard to even differentiate withdrawal from how I am really doing now. I know it must be quite a lot better, I was housebound more or less for about 4 years with IBS, then I started taking all the opiate-type drugs to compensate and be able to make it to work. I'm fairly sure I never had IBS though, still not officially celiac, I wish I could know that too, it would make waiting easier, if I knew for sure that was what was going on. All I know is that avoiding gluten was a dramatic improvement within a week, and then it's been a slow improvement since then. I guess I'll just keep trying to be patient, maybe try some gluten-free vitamins and hopefully feel better in a month or two. Going off the medicine has just sucked... the balancing act of how much do I need today, how much will be too much, how much will be too little. At least now I don't need it at all, so that's amazing. Thanks again for all the tips and helpful information. I had really given up on ever feeling better, and just resigned to taking as many drugs as I needed to feel functional. It's truly amazing that changing one little thing can make such a big difference, I wish they would suggest this to everyone they diagnose with IBS... just on the chance that it will work, regardless of tests, because if it does it's truly amazing. ben
  12. Yea, I've been on a ridiculously simple diet, rice and beef. I've been able to retry tortilla chips and they seem fine as long as they don't contain milk. I also take kirkman's pro-biotics, they seem to help a little bit. I don't have D, not really C (as long as I stay off medicine)... the main problem is cramping and just a raw feeling. My innards just feel raw like they've been scraped or something, abdomen just aches. I mean, it always has to some degree, codeine helped a lot, but since going gluten-free, I can't take it anymore causes C. So, I'm trying pepto, just to see if it helps any. I take vitamins off and on, I read about people taking sublingual b-12 and such. Is there anything else you can recommend that might help? Also, is the continuous kind of aching/raw pain fairly normal? I had it while on medication, but going off has made it worse, it could just be withdrawal, I have no idea how long it's going to take, having been on opiates for 5 years, now down to none, for me to feel somewhat normal again. Thanks again, you guys/gals are a big help, your posts are comforting, I'm trying to be optimistic. =) ben
  13. Thanks, that is good advice. I plan to stick to the diet, I just wish I could stop feeling sick.. lol. I mean, granted, I've felt this sick and been on a load of pills... so there is improvement that I can be completely off them and feel better than with them. But I still feel sick and run down. I'm very impatient, I want to feel all better. =) Or at least know when to expect it.
  14. Same here, I've heard candida for years. Starches and sugars don't bother me nearly as much now that I cut out gluten. Not perfect condition, but there is drastic improvement, of course it's somewhat offset by the fact that I don't take codeine or morphine every day now, but much better this way. =)
  15. Don't know if this is in reply to what I said, but I said, comparatively, an endoscopy is a walk in the park compared to a colonoscopy. I've had a couple and they are horrible, but the endoscopy was a breeze, didn't even know I had it until they told me much later on. The prep for a colo is terrible, but I don't think you need a colo to diagnose celiac, but maybe to rule out other problems, unfortunately for us all. They need more of those swallow the camera things, but I think you still have to do the prep. I wish they'd just let you not eat for like 4 days, I'd MUCH MUCH rather do that than drink another bottle of phospho-fleet... UGH! =) But yea, for an endo, no prep, just fasting, and it's over quick.