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Mr. GF in Indiana

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About Mr. GF in Indiana

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    Indianapolis, Indiana
  1. Apologies if this has already been discussed recently. Those of us who are diagnosed celiac or ncgs by a doctor, are not the point of the following article. The point is to take those who suffer some symptoms medically, who self-diagnose gluten is their problem, and find out what percent of that small group (population-wise) can in fact eat gluten without those symptoms arising. I have no idea if the self-diagnosed ncgs (non-celiac!) group in the USA is 50,000 or 500,000, or even in the millions. Note the doctors doing the study, very much assert that ncgs is a very real condition, what they are addressing is the accuracy of diagnosis for the very large group of self-diagnosing people. This is the article: http://www.ncbi.nlm.nih.gov/pubmed/23648697 Here is an explanation in English, and runner's world has a sizeable audience: http://www.runnersworld.com/nutrition-for-runners/are-you-really-gluten-sensitive Note that the elimination of Fodmaps by the researchers is important: these foods may themselves cause distress, and it is possible they cause the gut to react more readily with gluten (which may be an issue already researched and analyzed elsewhere). So perhaps 10% or less of those who self-diagnose as gluten sensitive for their symptoms, have got it right...pretty serious mistake, depending what their real issue is. In the 1960's, this was called "reader's digest disease", the digest would feature some arcane disease each month, and tens of thousands of old people would deluge their doctors convinced they had it...until the next month (now seeing the same effect with the aarp magazine, apparently).
  2. Some think many wines have gluten; if so, please note each batch of wine may vary in ppm. You can contact the manufacturer, or run your own elisa test. http://www.drvino.com/2011/11/30/gluten-free-wine/ This standard of 20 ppm of gluten as not showing symptoms of damage: is there really a safe limit, now that we know of the extent of neurologic and other "hidden" or "slowly accreting" health problems? Has anyone actually experimented with a product certified 20 ppm, and if so, what happened? 100 ppm? Hmmm...you know, if you folks who drink wine got together, you could do your own label of gluten free wine, called "celiac.com's finest".
  3. This is a long shot...I discovered even two years after diagnosis, my vitamin levels were STILL all low (D, B's) and I started a course of very heavy vitamin B. In essence, I had "dry beri-beri". Even though I was always taking vitamins...it didn't get into my blood for some reason, and this is apparently not unusual in autoimmune disease. (I am male, bald at 23). My sister is nonresponsive to vitamins, they are injecting her every few weeks with B's, not sure if she can eventually get along with pill mega-B's (I think each pill I take is 6000% of RDA, seems pretty overboard to me, but it is working somewhat). Oh...second long, long shot...my prescribed medications that were checked and approved, by six separate doctors for conflict...yeah, some of them turn out, to be one of the rare meds that can block thyroid supplement, so that even though my thyroid test read as if I was fine, I wasn't getting thyroid in the cells enough. BIG difference when I figured that out using experimentation, research, and then confirmed it with rxlist.com. But my hair isn't growing back (then again, male pattern baldness).
  4. Hmm...here's the study on corn. http://www.ncbi.nlm.nih.gov/pubmed/15888782. I missed. Since I have over 5000 celiac-oriented articles copied and indexed, clicking the slightly wrong place is rather a hazard of computers. If anyone has further questions or thoughts on what that all means, or the reason that corn gluten and casein resemble and act on many people in the identical way as if it is wheat gluten (because on a molecular level of the important fraction, it is in general)...feel free to do your own research on PubMed, on its British equivalent, and the French and German versions, and draw your own conclusions (although it seems most major German studies are getting into English...but not all). Every study has its limitations, unfortunately. Note: use the word "maize" as well as "corn". Also, scientists use the word "celiac" in all sorts of senses, one quickly learns that each has a different definition (also, "coeliac" if one is British, Maladie cœliaque if French, etc). I find that amazon has the largest list of gluten free packaged foods, but I am able to get them locally so far and haven't had to order from them, but the list is useful, maybe you can find the products you like in a competing, but marked "gluten free" package?
  5. Please feel free to believe whatever works for you and whatever you like. Where I live however, wheat is neither labeled on food cans sitting in my own kitchen, if one knows the hundreds of names under which wheat ingredients hide, or has called the manufacturer (example, wheat is used to act as a paste in wine barrels and to "fine" the wine...think that's disclosed?). Due to my wheat gluten-identical reactions to eating any corn (maize) I have researched this extensively. It is shown conclusively up to half of "celiacs" show an inflammatory response to corn, demonstrated in a "rectal challenge". http://www.ncbi.nlm.nih.gov/pubmed/11252409 The same test is used to show that celiacs react chemically to casein (the protein in milk, which is almost identical to the gluten protein). "A mucosal inflammatory response similar to that elicited by gluten was produced by CM protein in about 50% of the patients with coeliac disease. Casein, in particular, seems to be involved in this reaction." http://www.ncbi.nlm.nih.gov/pubmed/17302893 Also, sorghum (a very close corn relative but a major food crop) is thought to be safe for "celiacs"; it isn't if the problem is a prolamin problem, not merely a wheat gluten problem (beware cross contamination, of course). NOTE: there are about twenty-five thousand medical articles on celiac (coeliac) in worldwide medical journals just in English language alone (see, pubmed.com and other search engines). Please see the Cochrane reviews as to the low quality of many studies and their general statistical methods and reliability or undisclosed conflicts of interest.
  6. First congrats on using doctors to pursue your difficulty. However, if he wants to test you later for villous atrophy (celiac gut damage) you need to keep eating gluten for now. The test could turn up negative, you could still be gluten sensitive even so, just not "celiac". Labels in the US are unregulated as to wheat content (or corn, for that matter...lots of people have trouble with corn, celiac or not). You take your chances, check the "search" function on celiac.com for foods and drugs by brand name, lots of information here. You can, if the food is important enough, buy test kits for wheat gluten down to 20 ppm sensitivity or better. Your statistical odds of having "celiac" or "gluten sensitivity" WITH provable symptoms or consequences, are actually very small, meaning your problems can also be one of many other unfortunate conditions. http://farrp.unl.edu/resources/gi-fas/celiac-disease http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/#.Uc8A3fvD8kL I used align, found it worthless and most probiotics don't do much for most people (unless they are just finished with antibiotic). In order best to find out what foods and problems you may have...if any can be proven...consider doing an "elimination diet" where you find foods that don't trigger the symptoms, no matter how narrow that may be, then add one food at a time until you think you have the symptoms, repeat, and do research on the internet. This can require considerable discipline and a long time and multiple trials. I found sites such as rightdiagnosis.com to be helpful. Avoid jumping to conclusions; if you focus on one medical condition, use pubmed.com to read the articles description (and limits of each study) for yourself. Also check rxlist.com for all of your medication cross-reactions, it's surprising how difficult it is to avoid side effects as well (since many gut problems come from medications).
  7. I forgot in my first post, one other thing I am doing that has helped. I take fish oil, 1000 mg. twice a day. I believe it is shown, especially when taken with hydrocodone in a trace amount, to tighten the junctions of the gut, thus keeping out the nasty gut proteins somewhat from getting in the bloodstream. I buy a cheap brand at Costco, which has a late-digesting feature so I never taste the fish oil. I felt like this was a quack, ridiculous, idea when I stumbled on the research when investigating stomach junctions ("leaky gut"). However, it worked to improve the gut. I also had lifelong problems with runaway cholesterol and triglicerides, and the fish oil clearly dropped those dramatically, so for me, they work and it can be shown medically. Whether they will help you, ask your doctor. Here's an example of how well known this is: http://www.ncbi.nlm.nih.gov/pubmed/21693221. I used to take three a day, but I cut back when I read somewhere too much fish oil causes...something...bleeding, I think, and at my age, stroke risk is elevated. Take the fish oil prior to noon and evening meals, perhaps. One other thing I do is by habit...I "rest" my gut from midnight to noon, I only eat from noon to midnight. This has seemed to also help, but may be most inadvisable in a young person especially. You may also have trouble with salicylates if your gut is still damaged, especially tea, coffee, some herbs, aspirin or pepto bismol, for example. Also, avoid carbonated beverages.
  8. If you will review the research at pubmed.com, and the dozens of articles, you will find there is quite the issue with whether celiacs ever recover, how much, and what to do about it. There is something called "refractory" sprue (another older name for the flat villi) that in some people, just don't heal (assuming they aren't accidentally or purposely eating wheat). So, expect it to take time and even deal with the problem you may never completely be well, it is highly individualized. In my case, I react to corn and sorghum just like it was wheat gluten. Also, I had to take a mega-B to counteract my "dry beri-beri", it helped but took time. If your bloodwork now or ever shows high calcium or low phosphorous, or you have weakening bones, then check your parathormone levels. If you take any supplements or drugs, check them for compatibility at rxlist.com, and also, make sure what pills you consume do not have wheat starch in them (most don't, but many have corn starch). I take two prescribed medications that help my unique damage with symptoms as you describe, one is a very low level most-common prescription pain medication, and the other is Provigil. These are tremendously important in my case (60 years of damage) but should not be trifled with if you can humanly avoid them and doctors do not like to prescribe them (and my insurance does not cover the expensive Provigil, even though it should). Since my diagnosis and healing somewhat, I have been able to reduce the amount I take. I had good success with a cheap supplement called acetyl L carnitine (energy, less fatigue) but it turns out it is one of the unique substances that blocks thyroid action, and I have a residual thyroid problem, so I stopped it. Oh...and I take 50 mg. of caffeine once in a great while (like a weak cup of coffee, I hate coffee and tea has too much salicylate for me). I buy cheap generic caffeine, then take a pill cutter to it, I find 50 mg. is all I need (caffeine itself is hard on the gut). Consider asking (if you have insurance) for a test of your memory and cognition; that may help you establish how much neurologic damage you may have, and as a reference point for later. This is done by psychologists on referral from your doctor. Also, alert your dentist that you have celiac disease (no wheat-based product in mouth, check for dental enamel weakness).
  9. A common discussion between Celiac citizens (and many other disease sufferers), and their doctors, is that the gut or cognition problem is all in their head. Doctors make notes about the apparent mental health of their patient at many visits. I suppose I have had a dozen or more doctors tell me my health issues were somewhat or largely mental (except the psychiatrists they sent me to, who immediately began looking for the physical issue..ultimately my neurologic problems were explained to me as a vitamin/celiac issue by an eye doctor!). However, a common result of most gut disease is depression, partly from being sick and frustrated, isolated, and often a reaction to ssri's. Celiac disease and its consequences (like parathyroid disease) are well known to make you crazy, as your brain and nerves are attacked, sleep is destroyed, fatigue overwhelms the person, and they can't get proper nutrition. Incidentally, I discovered I can't handle a common ingredient of watermelon, can't remember the name, but it is used in a supplement at the health food stores/vitamin pushers. Also, if you take thyroid supplement, beware of things that interfere with it, such as Acetyl L Carnitine, which is otherwise helpful for energy to some people (it was, to me) but according to the rxlist.com it can interfere with and lower thyroid levels. So can calcium. Please consider carefully finding foods you can eat without issue, then slowly experiment repeatedly to find out what you can't handle. (bananas...how could I turn up sensitive to bananas? Damn).
  10. I react to all prolamins except rice: sorghum, corn, oatmeal included. My reaction is most of the usual symptoms plus strong neuropathy returns and burns in my legs, it's quite an exacting indicator. You can look at the research of "oats AND celiac" on pubmed.com. I do know corn comes in hundreds...thousands....of wildly different seed genetic mixes of proteins, so it may be that some types of oats are ok for most of us, and that others aren't. The labs running the experiments on oats, buy their oats from a special medical/scientific supply house, and it may be those oats are fine for celiacs, as a lucky coincidence, while every other oat variety and new crossbreeds...like goes into our cereals...are never tested but are toxic.
  11. Sympathies for your suffering...somehow, it seems like we largely suffer alone, doesn't it? I bought wheat-gluten test kits at $15 each, and after screwing up using the first one, read the directions more carefully. I found no cross contamination of gluten in any product that "shared facilities" with a wheat product line. So before you give up on an important food, it may be worth a few bucks to test it, and that means you may have other sensitivities or food issues you can discover or improve on. I tested three different rice brands from Thailand; no gluten found (wheat gluten, I mean). Even so, I have now gotten so doggone nervous I spend the extra few bucks a month and bought certified "gluten free" rice at my local gluten free store. Whole foods has been stocking more gluten free products, but my son, looking at their pricing, calls them "Whole Paycheck". Now, finding where corn and corn starch is hidden...that has been a whole other difficulty, and I haven't found a test kit for sorghum that is reasonably priced, and it's in many wheat-gluten free foods now.
  12. The advice above is excellent. I will add this only: Dr. Fasano in 2003, found that the title "celiac" as a diagnosis, fit only one person in one thousand. He found chemical evidence of celiac but without damage ascertainable, in about one in a hundred Americans (recognizing the many problems in making such guesstimates). http://www.ncbi.nlm.nih.gov/pubmed/12660623 http://www.ncbi.nlm.nih.gov/pubmed/12578508 but it would appear that, based on his study of relatives, that you have a 94/100 likelihood of NOT having celiac disease. It is also highly likely that if you do have celiac disease, that you may have other food centered issues. We get these food problems because plants have many defenses to discourage being eaten, and our immune systems often go overboard in attacking foreign food proteins. You may be sensitive to gluten even so; you may have trouble with corn, sorghum, oatmeal, milk, eggs, and other allergens. So please don't give up on yourself; we have the internet and it is a great help. Medical articles are summarized on pubmed.com, and using lists of symptoms and outcomes on such things as rightdiagnosis.com, you may find you can assist your doctors in finding what is wrong. University of Chicago celiac clinic web site, and my wide readings on food sensitivity on the internet, have shown me that 85% or more of those who improve their health due to diagnosing food sensitivity, figure it out on their own. The discouraging thing is that 60% of those with food sensitivity, even proven sensitivity, will continue to eat what they know makes them ill, so you have to dedicate yourself to finding answers and then sticking with those answers. Just to make it more difficult, keep in mind that there are many proteins in our foods, and that we do not know what most of those do or how they may be bad for us in some way. (We do know, clearly, that being fat or obese or eating junk and sugar is bad for us, yet most adult Americans do next to nothing to exercise or lose the weight...as an example). Also, you do not say how you know you have four relatives with celiac; many diagnoses of celiac are now being done by "doctors" who in fact, are not medical doctors but are chiropractors, naturopaths, osteopaths and even MD;s who do not do the test right...or do no testing at all...so lots of people who think they are celiac, well, they aren't (meaning they need to keep looking for what's wrong, if it can be found).
  13. You can only get a medical answer using the best tools of medicine available, which are now on the internet, such as pubmed.com, rightdiagnosis.com, and a hundred other web sites and forums. RESIST jumping to conclusions. RESIST quackery and utter nonsense. You don't mention your thyroid situation. Check it, re-check it, and research it. Also, adrenals. You may have drug/supplement interactions, check and recheck on rxlist.com. MANY drugs and supplements will wallop someone with celiac disease or a dozen other metabolic diseases. You may also have one of the common sensitivities/allergies: wheat, corn, milk, egg, etc. If you think food is a cause, get serious about scientifically nailing down what foods you can eat without any reaction, then add a small amount of suspect foods and see if there is a reaction. This can take months of cautious effort, even years. Repeat each test several times. Some food reactions have no immediate visible symptoms, but the food still can damage the person, so that's a tricky problem. Apparently, about sixty percent of those who are correctly diagnosed celiac still intentionally eat wheat, though, so if you are not motivated to devote yourself to a stringent diet and always looking to the long run, then there's no point experimenting with celiac. Also, it takes a huge amount of education and caution to be gluten free, due to our rather screwed up food supply system (example, restaurants will be a dangerous challenge). I doubt you will find quick or easy answers. But first, foremost, if you will try these ideas: SEE A COMPETENT DOCTOR, or more than one as needed, and take nothing at face value. If you have anyone in your life who can help you with these things, have them double check everything with you and do their own internet research. Do not expect anyone in medicine to care or to be willing to research anything for you or even listen to you. As to celiac disease, less than 1% of the population seems to have it, so your hope that you may be on to your main problem...99/100 says you aren't. I can't give you the benefit of my own situation or research, I don't have enough information and I'm not a doctor, but I will suggest you research whether you have narcolepsy or epilepsy and whether Provigil or xyrem will help you, neither of which are to be experimented with lightly. Oh...on that constipation, try three very small apples a day...yep, it's an effort. Or miralax. If the miralax makes you immediately and noticeably fatigued even more...research whether you have a "leaky gut".
  14. Pre-diagnosis: All of the worst of almost every physical and psychiatric symptom you can think of, worsening month to month for 60 years, but especially from age 50-60, bone pain from celiac-caused tumor of the parathyroid, and muscle wasting/neuropathy. Post celiac diagnosis 2010: residual dementia, neurologic damage, which is both disabling and terribly painful. The dozens of other problems, are now almost entirely fixed, controlled, ignored, or surgically repaired, so there's that. The moral: Where would we be without the invention of the internet? (especially pubmed.com) and all the wonderful posters everywhere who shared their agony, mistakes, and successes without which my journey to this point would have been almost impossible. So thank you.
  15. Thank you for the post, it is very meaningful to me. It shows that someone, somewhere, in the medical community has begun to really pull the basics of medical support and investigation of celiac disease together. These recommendations would have helped me if my doctors had any knowledge of the existence of such a list to use as a guide to what to do next. They didn't, including my current doctor who HAS celiac disease.