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concernedlady

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  1. Hi Gemini, My birthday is in June, so I'm a Gemini too---and I do agree with some of your good points. I had written that one could EITHER try Dr. Fine's stool sample testing, where his EnteroLab looks for elevated numbers of IgA antibodies to various food proteins (gluten, milk proteins, soy proteins, yeast proteins, etc.), OR one could just avoid eating or drinking or touching suspect food proteins, for at least a month (3 months is better), and see whether AVOIDING eating and touching such proteins causes improvement or not, in one's symptoms and lab test results. I urge you (and anyone else who wonders about this) to speak by phone, with people working at Dr. Fine's EnteroLab, and state your objections to them, and see what their replies might be. Here's their phone number: 972-686-6869. I called Dr. Fine's Enterolab, and the folks I spoke with there, were nice enough to reply to any questions that I had, including one lady (I believe she was a nurse) there telling me about the "IgA deficiency" blood test called "total secretory IgA", which one can do first, to see whether it pays to try EnteroLab's stool sample testing! From what I understand, Dr. Fine doesn't try to distinguish between Celiac and non-Celiac forms of gluten "sensitivity". This is because although Celiac Disease is VERY serious, it is the "tip of the gluten-sensitive iceberg", meaning, that higher percentages of gluten-sensitive folks are NON-Celiac gluten-sensitive folks, who can also have major health problems, but the non-Celiac folks have "villi" that are sub-microscopically damaged, and thus, this sub-microscopic villi damage cannot be seen under the microscope--but it's there! And, Dr. Fine's point, is that in both Celiac and non-Celiac types of gluten sensitivity, the cure is the same: AVOID GLUTEN! Dr. Fine doesn't use the term "gluten intolerance", because newer uses of the word "intolerance" refers to NON-PROTEIN intolerances, such as "lactose/milk sugar intolerance" (lactose/milk sugar is a carbohydrate, not a protein), and intolerances are not related to one's immune system, while gluten "sensitivity" and other "sensitivities" ARE related to one's immune system, with ingestion (eating or drinking the offending proteins) causing one's immune system to cause the production of antibodies to those proteins that one is "sensitive" to. Many years ago, a friend of my husband, went to a local doc who told my husband's friend to try avoiding gluten. My husband's friend, without being biopsied, went off gluten, and has become well, ever since that day long ago. Some years ago, both my husband and I did Dr. Fine's "EnteroLab" stool sample testing, for gluten sensitivity. My husband came out positive, and I came out negative. My husband has avoided gluten, ever since then, and I try to do so also, to avoid tempting him to cheat, and he has avoided getting colds, etc., the way he used to, before he stopped eating glutenous foods. And, there is much disagreement (I know, because I'm a retired nurse, and I've been a patient now and then) between doctors, about gluten sensitivity, and about anything medical. So, I've learned to be wary of the terms "valid medical institutions" and "valid medical professionals". What may seem valid today, might be disproved tomorrow, and what might not seem valid today, may be shown to be valid tomorrow. Medicine is always in flux, thankfully. If not, medicine would be "dogma". If you call and speak with Dr. Kenneth Fine (M.D., gastroenterologist, "sensitive" to many food proteins himself, including gluten, but not "Celiac") &/or to the folks working at his Enterolab, please let us know what their replies are, to your objections to his lab's work. In the meantime, let's both try to keep an open mind. Sincerely, Carol Sidofsky (wife of gluten-sensitive non-Celiac hubby, and I'm a retired RN/nurse)
  2. Hi Emma6, Thank you for pointing that out! I agree with you! Good points! I stand corrected. She also doesn't need to intentionally re-expose herself to gluten, since she is intelligent enough to realize that it makes her sicker! If she wants to find out if she may be sensitive to various additional proteins (besides gluten), such as milk proteins, soy proteins, egg proteins, yeast proteins, etc., she can either try Dr. Kenneth Fine's stool sample testing via his lab, or, she could avoid all those proteins, for say a month, and if and when well, she could start re-introducing each of those proteins, one at a time, to see which ones cause problems, or don't cause problems! Sincerely, Concerned Lady (retired RN/nurse, hubby has non-Celiac gluten sensitivity)
  3. Hi gluten-free Puddin, You asked a good question! You wrote: "... As a follow-up, anyone know of other ways to test for celiac disease instead of biopsy? I fear going back on gluten for this damn test. It'll RUIN me." The answer is "yes and no". I'll explain. The test for Celiac Disease involves an invasive process of taking biopsies (small pieces) from one's small intestine, and then looking at those "slides", under a microscope, to see if the villi (tiny, microscopic finger like projections that line the interior of the small intestine) look blunted, flattened, or destroyed--which indicates "Celiac Disease". However, even with true Celiac Patients, this test is NOT FOOLPROOF, because sometimes the biopsy samples are taken from "normal-looking" areas BETWEEN injured villi, and this can cause a "false negative" result/conclusion. And, there are large numbers of gluten-sensitive patients who are "non-Celiac" in their type of gluten sensitivity, so their villi LOOK normal, under a microscope, but (according to Dr. Kenneth Fine, M.D.) their villi are NOT WORKING normally. Dr. Fine says (at his website, at enterolab.com) that such non-Celiac (but still gluten-sensitive) patients, have SUB-MICROSCOPIC (not visible even under a microscope) "subtle" damage to their villi, causing mal-absorption (a type of starvation!), and other bad symptoms. Also, forcing a patient to eat gluten, is cruel, because it can cause horrible health injuries to both Celiac and non-Celiac gluten-sensitive patients. AND I FEEL THAT TAKING BIOPSIES MAY NOT BE NECESSARY, TO DIAGNOSE GLUTEN SENSITIVITY. So, what to do? Here are some ideas: 1) Avoid gluten "religiously" for 3 months, and follow the advice of all the good people here, to avoid your getting UNINTENTIONALLY "glutened", by accident, or, by "cheating". 2) As you yourself saw, it's probably better to ALSO avoid milk proteins, in case you are "sensitive" to various milk proteins, too--which is common, among gluten-sensitive folks! 3) Dr. Kenneth Fine does have NON-INVASIVE stool sample testing, that looks for elevated numbers of "IgA" antibodies to gluten (&/or to other proteins, such as milk proteins, egg proteins, soy proteins, yeast proteins, etc.), in a STOOL SAMPLE. If Dr. Fine's "EnteroLab" finds these larger than normal numbers of IgA antibodies to gluten, etc., in one's stool sample, then he concludes that one is probably gluten-sensitive, and should avoid gluten in all forms (food, drink, envelope glue, glue on stamps, etc.). However--if a person has an "IgA deficiency", then, it means that the person's immune system isn't working properly, and their immune system is unable to tell the person's large intestine (also called the "gut", or the "colon") to MAKE the IgA antibodies in large numbers, against whatever protein the person really is "sensitive" to. And this "IgA deficiency" can cause a "false negative" result in Dr. Fine's stool sample testing. So, you might want to FIRST, get a blood test done, that is called "total secretory IgA", which I was told can tell you if you DO OR DON'T have an "IgA deficiency". If you "pass" the "total secretory IgA" blood test, THEN, doing Dr. Fine's stool sample testing, would be MOST RELIABLE. If, you 'fail" the "total secretory IgA" blood test, THAT means you have an "IgA deficiency", and the stool sample testing may miss finding that you are gluten-sensitive (false negative test result for the stool sample testing). Dr. Fine's stool sample testing does not distinguish between Celiac & non-Celiac types of gluten sensitivity, but in my mind, that's OK, because EITHER TYPE of gluten-sensitivity causes pain and misery to many gluten sensitvie folks. -------------------- So, if I were you, I would avoid gluten period, and avoid milk proteins period, for at least 3 months, and see what happens, while, at the same time: Keep a "food diary", to see what foods &/or drinks might have troublesome proteins (in your case) in them! Note day, date, times, foods (including all ingredients), and what symptoms you get. Then, you can avoid what makes you feel ill, and your small intestine can start to really heal and you can feel better and get better!
  4. Hi Bobby! Thanks for your kind words! Thanks, Loey for your welcome, too! If anyone sees anything needing clarification or corrections to my gluten-free info in my website, let me know! I have some gluten-free info in Appendices B & E, on webpage 10 of my website.Sincerely, Carol (concerned lady)
  5. My website is called: Can't Breathe? Suspect Vocal Cord Dysfunction! Here's a link to the home page webpage:

    http://cantbreathesuspectvcd.com

    I include some tips on eating gluten-free, on webpage 10, in Appendices B (reflux tips), and Appendix E (gluten-free tips).

  6. Hi Bobbie and all, I first learned about Celiac Disease, from a very nice guy---friend of my hubby, and this friend was told by a doctor, 20-30 years ago, to just stop eating gluten (the friend had all the usual symptoms of Celiac Disease). This friend soon got well, and has stayed well, as long as he doesn't accidentally get "glutenized". He never had any endoscopy done--no biopsies--he just listened to the wise doc, way back then, who I personally suspect also had Celiac Disease, and "recognized" that possibility in this friend! Fast forward to a few years ago: I learned about the existence of non-Celiac gluten sensitivity, from a gal Cara, who frequented a peripheral neuropathy forum that I was on (I had peripheral neuropathy, probably from a Vitamin B 12 deficiency, probably from lack of enough stomach acid). Cara had learned about gluten sensitivity from Dr. Kenneth Fine, MD (gastro doc in Dallas, TX) who has "EnteroLab", at www.finerhealth.com My hubby had enough health problems, that I finally said, "Let's both of us have the non-invasive stool sample tests done, by EnteroLab". He finally said OK, and HE came back positive for gluten sensitivity, while I came back negative. My hubby was annoyed, but, he tried going gluten-free, and it has helped him A LOT! He hardly ever gets sick anymore, etc. He does pay a price, if he cheats, or accidentally gets glutenized. I loved everything that you all said in this thread! What I feel is this: Whether one has Celiac Disease, or a non-Celiac form of gluten sensitivity, the "cure" is the same: Avoid gluten! I recommend this good forum, and a few other good Gluten-free forums, to all who find my website about VCD (vocal cord dysfunction). Several people have told me they couldn't cure their VCD (short duration "laryngospasms") until they stopped having severe reflux, and they couldn't decrease their reflux significantly, until they finally tried my advice, which was: try going off gluten for several months, and see if it helps.Carol (concerned lady)
  7. I'm sure you will get more answers from neat people here, soon! I have learned much from other folks here, and at other gluten intolerance forums. I agree with your hubby: I recommend that you try going gluten-free for one month. The "easiest" way to start, is to buy whole foods, foods that are not processed in any way. For example, meats, fish, fowl, etc., raw fruits, raw veggies, nuts, seeds, olive oil, and sweeteners such as honey, ground dates, ground raisins, etc. (not too much). I recommend that you use only brown rice, as a gluten-free grain. This is because corn, although gluten-free, is not tolerated well by many people. Also, avoid soy (many are intolerant of soy). Avoid the glutenous grains: wheat, rye, triticale (a hybrid of wheat & rye), and barley. Oats may have gluten from processing plants, and many gluten-intolerant people don't tolerate oats. Buckwheat may be contaminated with gluten at processing plants, and many are allergic to buckwheat. There are "sneaky" forms of glutenous foods, that you also would need to avoid, such as spelt (a type of wheat), kamut (a type of wheat), semolina (wheat), farina (wheat), wheatina (wheat), "starch" (could be glutenous), "grain alcohol" (could be glutenous), "grain vinegar" (could be glutenous), pasta (avoid if wheat pasta--but, there are excellent brown rice pastas--gluten-free & delicious, like made by "Tinkyada"), "cereals" (if made from wheat, rye, barley, oats, buckwheat), "bulghur" (wheat), teff, sorghum, (might have gluten that may not be detectable in available testing), quinoi, amaranth (may or may not agree with gluten intolerant people). Also, since you've had antibiotics, you might now have a yeast (Candida albicans) infection. Have you taken any probiotics, to help cure any possible yeast problem? I also recommend completely avoiding internal tampons, because these INCUBATE YEAST CELLS, and make it impossible to fully cure yeast infections! (I learned this, many years ago--when I had to go back to the dreaded..."napkins") I recommend that you take "probiotics" that are both gluten-free, and, free of cow's milk. Many people who are gluten intolerant, also have problems with cow's milk. The problems may be: 1) lactose (milk-sugar) intolerance. This is easy to deal with, by taking lactase enzymes (like "Lactaid" pills or drops, sold over the counter). 2) intolerance to certain proteins in cow's milk, such as CASEIN, &/or WHEY, etc. Avoiding cow's milk for a month can be helpful, in dealing with both lactose intolerance, and with casein intolerance, etc. Goat's milk has almost no casein in it, which may explain why some people do better with goat's milk than with cow's milk. For milk substitutes, you can try making your own "rice mylk" or "almond mylk". Place a handful of cooked (organic) brown rice (or raw, unsalted, organic almonds) in a blender. Add an 8 ounce glassful of well water (or spring water). Blenderize. Strain several times. Store in refrigerator. Another thing about probiotics: Some contain FOS's (fructo-oligo-saccharides), which are supposed to feed the good bacteria (probiotics). The problem is, that sometimes the FOS's also feed bad bacteria, causing stomach bloating, diarrhea, etc. I suggest avoiding FOS's. The only probiotic I've seen, so far, that appears to be both gluten-free and free of cow's milk, is Ethical Nutrients "Dairy-Free Maxi Bifidus", sold at good health food stores (see refrigerated section). I recommend that you start to keep a total food diary, for a week or 2, including day, date, times. Include all foods, snacks, beverages, medications, etc. This can help you figure out what foods you may be intolerant of. There are other hidden sources of gluten, such as previously used cast iron cookware, previously used wooden cutting boards, wooden spoons, etc. Some envelope glues contain gluten! Some medications contain gluten! Also, you can send a stool sample to EnteroLab, which is run by Dr. Kenneth Fine, MD, a well credentialed gastroenterologist who himself is gluten intolerant. You don't have to send the stool sample in, immediately, because antibodies to gluten (in the stool) last for at least a month after starting to go gluten-free. See http://www.finerhealth.com for info about Dr. Fine's EnteroLab stool testing. You may also want to read Dr. Fine's "talk" he gave to a Celiac group, about how there are many kinds of gluten intolerance. Celiac Disease is one kind. There are other kinds, too. I think his talk is called "Before the Villi Are Gone". It's in his EnteroLab website. Maybe others will have advice about the fibroids, etc. It's not easy to sort out everything. But, with help from folks here, and better docs, I think you will be able to figure it all out! Don't give up! :-) Carol http://cantbreathesuspectvcd.com
  8. In reading about what foods have gluten, and what foods don't, there seem to be several opinions (some conflicting) about what foods are safe, and what foods are not safe, for gluten intolerant people. Dr. Fine recommends avoiding ALL grains. Here's what I have read. If any of this is not correct, please let me know: Glutenous foods include certain grains in the grass (graminae) family, and these glutenous grains include wheat, rye, barley, and triticale (a hybrid of wheat & rye). Wheat includes spelt & kamut (ancient forms of wheat). Wheat also includes farina, wheatina, semolina, bulgur, durum, etc. Malt is glutenous, if made from barley (so avoid beer made with barley malt). "Natural flavorings" might contain gluten. "Starch" may contain gluten. Oats are controversial. Some Celiac & Gluten Intolerance groups say to avoid oats, because of 2 main reasons: 1) Oats may have proteins in them that are somewhat similar to gluten, and this may cause problems for gluten intolerant people. (But some groups dispute this). 2) Oats can be contaminated at processing plants, with gluten from wheat, rye, barley, if these glutenous grains happen to also be processed at these plants (factories). The following foods also seem to be somewhat controversial: Buckwheat is not a true "grain" (it's in a different plant family from the "graminae"/grass family). But, buckwheat (also called "kasha") may have gluten-like proteins in it (I think), that can bother some gluten intolerant people. Buckwheat can be contaminated with gluten, if processed in the same factory as wheat, rye, barley, triticale (glutenous grains). Some Celicac groups & Gluten intolerant groups say buckwheat is OK to eat. Other groups put buckwheat into their "gray" areas of possibly "no-no" foods. Millet is in the grass (graminae) family, and I believe, has no gluten in it. Millet is tolerated well by some gluten intolerant people, but not by others. Tef is an Ethiopian tiny grain, that is in the grass (graminae) family. I don't know if Tef is glutenous or not. Sorgum/Sorghum is also in the grass (graminae) family. I don't know if it has any gluten in it or not. Special Elisa (?) testing to see if it is glutenous, appears to not be sensitive enough to detect possibly very low levels of gluten. Quinoa and Amaranth are seeds that may or may not bother gluten intolerant people. Wild Rice (grown in lakes in Minnesota, etc.) is in the grass (graminae) family, and I think Wild Rice is gluten-free. Is Wild Rice gluten-free? RICE IS GLUTEN-FREE, and is tolerated well by most gluten intolerant people, unless one is "allergic" to rice. Brown rice is more nutritious than white (denatured) rice. Brown rice can be used to make breads, cookies, crackers, cakes, pastas, cereal, gravies, etc. Corn is also gluten-free, and is tolerated well by some gluten intolerant people. But, some people are intolerant to corn, and should avoid corn. This includes corn syrup, found in some baby formulas! And, if all this is not confusing enough, people can be intolerant of other foods, like SOY, and COW'S MILK! It may be easiest (and safest) to either avoid all grains, or, just use brown rice. What do you all think? Carol http://cantbreathesuspectvcd.com
  9. Dear Kindness, You can email &/or speak by phone with Dr. Kenneth Fine, M.D. (gastroenterologist who has gluten intolerance himself, as does his daughter). Dr. Fine started a lab called EnteroLab, that does stool sample testing, looking for the presence or absence of antibodies to gluten, in patients' stool samples. Dr. Fine could tell you whether such testing would be reliable in your daughter's case or not. Here's a link to his website: http://www.finerhealth.com Another thing you can consider doing, is to keep your daughter gluten-free, until she is older. If she continues to do well, being on a Gluten-free diet, you'll have your answer--stay gluten-free. (avoid glutenous foods such as anything containing wheat, rye, barley, & oats & buckwheat. Brown rice is gluten-free. Corn is also gluten-free, but some children are intolerant of corn, so it may be good to avoid corn, at this time.) If she wants to do a gluten challenge, when she is an adult, that would be an option, at that time. Carol http://cantbreathesuspectvcd.com
  10. DEAR KAYLEEN, HERE ARE SOME IDEAS, AS RESPONSES TO WHAT YOU WROTE: I have almost all of the symptoms listed for Celiac disease. HAVE YOU TRIED A (STRICTLY) GLUTEN-FREE DIET, FOR A MONTH, TO SEE IF THIS HELPS YOU TO FEEL BETTER? ------------------------ But I also have a few things that I'm not sure if it would fall under this. Stress, smoking, and medication (mainly antibiotics) just tear me up. GLUTEN INTOLERANCE CAN CAUSE DEPRESSION, SO A GLUTEN-FREE DIET CAN HELP WITH GLUTEN-INDUCED STRESS! AND, YOU COULD LOOK FOR A KIND, PSYCHOLOGIST, OR COUNSELOR, TO HELP GIVE YOU SOME EMOTIONAL SUPPORT, IN CASE YOU HAVE "SITUATIONAL" STRESS (LIKE MOST PEOPLE DO!). THE SMOKING HABIT CAN BE CONQUERED, FOR EXAMPLE, WITH A GROUP OF PEOPLE GIVING EACHOTHER SUPPORT, TO QUIT. SMOKING CAN CAUSE CONSTRICTION OF BLOOD VESSELS, MAKING DIGESTIVE PROBLEMS WORSE. SMOKING CAN CAUSE ULCERS, TOO. WHILE YOU'RE ON ANTIBIOTICS, YOU COULD TAKE SOME "PROBIOTICS" THAT ARE BOTH GLUTEN-FREE & MILK-FREE, TO RE-POPULATE THE BENEFICIAL BACTERIA (PROBIOTICS) THAT THE ANTIBIOTICS KILL, IN THE DIGESTIVE TRACT, INCLUDING THE SMALL & LARGE INTESTINES. TAKE THE "PROBIOTICS" HALF WAY BETWEEN ANTIBIOTIC DOSES, TO PREVENT ANTIBIOTICS & PROBIOTICS FROM "NEUTRALIZING" EACHOTHER'S EFFECTS! PEOPLE HERE MAY HAVE SOME RECOMMENDATIONS FOR "PROBIOTICS" BRANDS THAT ARE GLUTEN-FREE. YOU MIGHT CONSIDER A PROBIOTIC FORMULATION CALLED "DAIRY-FREE MAXI BIFIDUS", MADE BY A COMPANY CALLED "ETHICAL NUTRIENTS". ALTHO THE LABEL DOESN'T SAY GLUTEN-FREE, THE COMPANY SAID (BY PHONE) THAT IT IS GLUTEN-FREE. YOU COULD CHECK, WITH THE COMPANY, BEFORE BUYING IT. --------------------------- It doesn't make sense that these would fall under Celiac..does anybody else have these problems?? OTHERS WILL BE ALONG TO SHARE IDEAS ABOUT THIS. ---------------------------- Most of my problems are generally right after I eat..but sometimes they come out of nowhere. And I don't generally have any really bad problems when I'm sleeping. 99% of the time it's when I'm awake. Any thoughts on this?? THERE MAY BE DELAYED EFFECTS, DEPENDING ON WHAT YOU ARE INTOLERANT OF, THAT YOU EAT. OTHERS MAY HAVE IDEAS ABOUT THIS, TOO. ALSO, CHECK OUT DR. FINE'S WEBSITE, ABOUT HIS STOOL TESTING AT HIS "ENTERO-LAB". SEE http://www.finerhealth.com MANY PEOPLE HERE HAVE BENEFITTED FROM THIS NON-INVASIVE STOOL SAMPLE TESTING FOR GLUTEN INTOLERANCE, AND FOR SOME OTHER FOOD INTOLERANCES. HANG IN THERE. PEOPLE HERE ARE NICE, KNOWLEDGABLE, AND WILL HELP, AND GIVE YOU SUPPORT! :-) CAROL http://cantbreathesuspectvcd.com
  11. DEAR MOM OF GLUTEN INTOLERANT SON, HERE ARE SOME RESPONSES TO SOME OF WHAT YOU WROTE: What I am wondering is if I have a problem with gluten, could the little bit that I have been ingesting cause me to have increasing symptoms and now nutritional problems? YES. BUT, THERE MAY BE ADDITIONAL PROBLEMS THAT NEED TO BE DIAGNOSED, TOO. ------------------- Why would they get much worse? I BELIEVE THAT WHEN PEOPLE ARE ALMOST GLUTEN-FREE, AND THEN EAT A LITTLE BIT OF GLUTEN, THEY CAN HAVE WORSE REACTIONS TO THE GLUTEN THAN THEY HAD PREVIOUSLY. BUT, YOU MAY ALSO HAVE ADDITIONAL PROBLEMS THAT STILL NEED TO BE DIAGNOSED, INCLUDING POSSIBLE ADDITIONAL FOOD INTOLERANCES (IN ADDITION TO GLUTEN INTOLERANCE). ------------------- Also, how much do you need to ingest and for how long for what kind of test to show the problem? THESE ARE GOOD QUESTIONS. OTHERS WILL SHARE IDEAS ABOUT ANSWERS. ONE ANSWER IS TO HAVE A STOOL SAMPLE TEST DONE, BY DR. KENNETH FINE, MD's "ENTERO-LAB", WHERE THE STOOL TESTS LOOK FOR THE PRESENCE OR ABSENCE OF ANTIBODIES TO GLUTEN. SEE DR. FINE'S HELPFUL WEBSITE, AT http://www.finerhealth.com ------------------------ I need to understand what I am talking about when I go back to my doctor. This group of doctors has not been very helpful to me with my son as far as his food sensitivities, behavior problems, etc. They seem to not understand any of it so just ignore that he has any problems. I am afraid that is what they will do with me. I am not satisfied with "take vitamins for three months, come back and redo the CBC." THIS IS A GOOD FORUM HERE, WHERE FOLKS CAN HELP YOU LEARN MORE, SO YOU'LL BE READY TO SPEAK WITH YOUR DOCS. ,BE PREPARED FOR POSSIBLE RESISTANCE: WHEN DOCS DON'T KNOW ABOUT A TOPIC, SOME REBEL AGAINST LEARNING NEW THINGS. BUT, LUCKILY, YOU DON'T NEED A PRESCRIPTION TO GO GLUTEN-FREE! ------------------------- When initially being tested for different things, my son had a urinary peptides test done for both casomorphin and gliadorphin. The gliadorphin was 160.4 (normal being less than 20ng/ml). That was before the Gluten-free Casein-free diet. In January, he had the Celiac Disease AB Profile done with the following results: IgA-negative, IgG-negative, (tTG) IgA-negative, Reticulin IgA Ab-negative, Reticulin IgG Ab- 1:20 He hasn't had his follow-up appointment with the doctor that drew these labs yet so I don't understand the results, but I thought it might help you answer my questions. OTHERS CAN HELP TO INTERPRET THESE TEST RESULTS. IF YOU DON'T GET THESE TESTS FULLY INTERPRETED HERE, YOU CAN TRY ASKING "JCC" AT A SIMILAR NICE FORUM CALLED "GLUTEN INTOLERANCE/CELIAC DISEASE", OVER AT http://www.braintalk.org ---------------------------- Even though I have been doing all this research to help my son, I have never really researched what related problems I might have. I feel so ignorant! I'm sorry if this is confusing. That seems to be how my brain is working lately. Thanks for your help! YOU'RE AT A GOOD FORUM, TO HELP YOU GET ANSWERS, FOR YOURSELF, AS WELL AS FOR YOUR SON! PEOPLE HERE ARE NICE, AND KNOWLEDGABLE, AND WILL GIVE YOU SUPPORT! HANG IN THERE, AND FOLLOW YOUR GOOD "GUT INSTINCTS"! CAROL http://cantbreathesuspectvcd.com
  12. Dear Marsha, You can have your (gluten-free) cake & eat it! You could have a non-invasive stool sample test done, for gluten intolerance, and this stool sample testing can be done WHILE you are gluten-free, and it can be done even a month or more after you've been gluten-free. See Dr. Kenneth Fine's "EnteroLab" website, about his innovative, reliable, non-invasive testing. Dr. Fine is a credentialed gastroenterologist, who himself has a gluten intolerance (as does his daughter). Here'a a link: http://www.finerhealth.com Many people on this forum here, have had EnteroLab testing, and it usually validated their decision to go gluten-free. Sincerely, Carol http://cantbreathesuspectvcd.com
  13. I posted the following talk by Dr. Fine, in a Jan 17 2004, 11:28 AM message in the "pre-diagnosis" section of this forum. Dr. Fine's talk (SEE BELOW) may help to describe the differences between CELIAC DISEASE and some types of non-Celiac GLUTEN INTOLERANCE. To summarize, I believe that Celiac Disease (celiac disease) is one kind of gluten intolerance, among many, and with celiac disease, the microscopic finger-like projections called "villi" in the small intestine lining, are noticeably (can be seen with a regular microscope) damaged, blunted, flattened or destroyed by an auto immune reaction to eating gluten. What can be tricky, is that a person may be genetically prone to developing celiac disease, but, if the person stops eating gluten, before celiac disease starts to develop, the celiac disease may never fully develop! So does this person have celiac disease or not? The docs might say "no" because no villous atrophy can be detected...yet. Yet, a person who is prone to getting celiac disease, but hasn't developed the celiac disease, still may have some small intestinal problems. These problems usually lessen, once the person goes on a strictly gluten-free diet. On the other hand: The small intestine can ALSO be damaged by a reaction to gluten, in a person who has non-Celiac Disease GLUTEN INTOLERANCE, but the small intestinal damage may be on such a sub-microscopic scale, that the "villi" never get "obviously" damaged--However, as Dr. Fine describes below, the small intestinal damage in non-celiac disease gluten intolerant people, can still be considerable, even if it is "non-detectible", and even if it is not celiac disease! So, a person with non-celiac disease "gluten intolerance" can have serious small intestinal problems of indigestion and/or mal-absorption! Also, hidden gluten can cause small intestinal problems, as can additional intolerances, to such things as casein (a protein in cow's milk), whey (another protein in cow's milk), soy, corn, etc. ***************** Below is a copy of Dr. Fine's talk, given in Louisville, to a Celiac Sprue Support Group, in June of 2003. He gave me permission to share this. I found it very interesting and informative. I apologize for the lengthiness. I added a few things in [ ] parentheses, and added more paragraph spaces, for better readability: Sincerely, Carol fsds@rkymtnhi.com http://cantbreathesuspectvcd.com ************************* "Early Diagnosis Of Gluten Sensitivity: Before the Villi are Gone." "Transcript of a talk given by Kenneth Fine, M.D. to the Greater Louisville Celiac Sprue Support Group, [June, 2003] (Initial transcription by Marge Johannemann; Edited by Dr. Kenneth Fine, with assistance by Kelly Vogt) Dr. Fine has been an intestinal researcher and an academic and clinical gastroenterologist for 15 years. He is the Director of The Intestinal Health Institute and The EnteroLab.com Clinical Laboratory in Dallas Texas. "Gluten sensitivity" is the process by which the immune system reacts to gluten contained in wheat, barley, rye, and oats. The reaction begins in the intestine because that is where the inciting antigen, gluten, is present (from food). When this immunologic reaction damages the [microscopic] finger-like surface projections, the villi, in the small intestine (a process called villous atrophy), it is called celiac disease (or sometimes celiac sprue or gluten-sensitive enteropathy). The clinical focus of gluten-induced disease has always been on the intestine because that is the only way the syndrome was recognized before screening tests were developed. The intestinal syndrome consists mainly of diarrhea, gas, bloating, nausea, vomiting, fat in the stool, nutrient malabsorption, and even constipation. Although the small intestine is always the portal of the immune response to dietary gluten, it is not always affected in a way that results in villous atrophy. Even though recent research has shown that celiac disease is much more common than previously suspected, affecting 1 in 100-200 Americans and Europeans, past and emerging evidence indicates that it accounts for only a small portion of the broader gluten sensitive clinical spectrum (often referred to as the "Tip of the Gluten Sensitive Iceberg"). With better understanding of how gluten triggers immune and autoimmune reactions in the body under the control of various genes, and advancing techniques of detecting these reactions, it is becoming apparent that the majority of the gluten sensitive population (the submerged "mass of the iceberg") do not manifest villous atrophy in its classic, complete form and therefore do not have celiac disease. In these non-celiac, gluten sensitive individuals, the brunt of the immune reaction either affects the function of the intestine, causing symptoms without structural damage, affects other tissues of the body (and virtually all tissues have been affected in different individuals), or both. This is important because the commonly used diagnostic tests of clinically important gluten sensitivity (blood tests for certain antibodies and intestinal biopsies) are only positive when villous atrophy of the small intestine is present. But if only a small minority of gluten sensitive individuals actually develop celiac disease, the majority, who have not yet or may never develop villous atrophy, with or without symptoms, can remain undiagnosed and untreated for years. This can result in significant immune and nutritional consequences, many of which are irreversible even after treatment with a gluten-free diet. Some of these disorders include loss of hormone secretion by glands (hypothyroidism, diabetes, pancreatic insufficiency, etc), osteoporosis, short stature, cognitive impairment, and other inflammatory bowel, liver, and skin diseases, among others [like neurological problems, etc.]. Only with early diagnosis, can these problems be prevented or reversed. I am here to report on a scientific paradigm shift regarding early diagnosis of gluten sensitivity based on about 30 years of medical research by myself and others. My message is that earlier and more inclusive diagnosis of gluten sensitivity than has been allowed by blood tests and intestinal biopsies must be developed to prevent the nutritional and immune consequences of long-standing gluten sensitivity. Imagine going to a cardiologist because your blood pressure is high or you’re having chest pain, and the doctor says he is going to do a biopsy of your heart to see what is wrong. If it 'looks' O.K., you are told you have no problem and no treatment is prescribed because you have not yet had a heart attack showing on the biopsy. You would not think very highly of the doctor utilizing this approach because, after all, isn't it damage to the heart that you would want to prevent? But for the intestine and gluten sensitivity, current practice embraces this fallacious idea that until an intestinal biopsy shows structural damage, no diagnosis or therapeutic intervention is offered. This has to change now because with newly developed diagnostic tests, we can diagnose the problem before the end stage tissue damage has occurred, that is "before the villi are gone," with the idea of preventing all the nutritional and immune consequences that go with it. There are many misconceptions regarding the clinical presentation of gluten sensitivity or celiac disease: For example, that you cannot be gluten sensitive if you have not lost weight, are obese, have no intestinal symptoms, or are an adult or elderly. However, the most widely held and clinically troublesome misconception is that a negative screening blood test, or one only showing antigliadin antibodies (without the autoimmune antiendomysial or antitissue transglutaminase antibody) rules out any problem caused by gluten at that time or permanently. For some reason, the high "specificity" of these blood tests has been tightly embraced. Specificity means if the test is positive, you surely have the disease being tested for with little chance that the positive is a "false positive." But sadly, a negative test does not mean you do not have the problem. This is the biggest pitfall of all because the only thing a very specific test, like blood testing for celiac disease, can do is "rule in" the disease; it can not "rule it out." If you’ve got very far advanced and/or long-standing celiac disease, it is likely that the test will be positive. However, several studies have now revealed that it is only those with significant villous atrophy of the small intestine who regularly show a positive antiendomysial or antitissue transglutaminase antibody, the specific tests relied upon most heavily for diagnosis of gluten-induced disease. When there was only partial villous atrophy, only 30% had a positive test. More disturbing perhaps, were the results with respect to screening first degree relatives of celiacs with blood tests. Despite some biopsy-proven early inflammatory changes in the small intestine but without villi damage, all blood tests were negative. For some reason, it’s been perfectly acceptable to celiac diagnosticians that a patient must have far advanced intestinal gluten sensitivity, i.e., villous atrophy, to be diagnosed and a candidate for treatment with a gluten-free diet. That means from the specific testing standpoint, there’s never (or rarely) a false positive. But what about the larger majority of gluten-affected people who do not presently have or may never get this end stage, villous atrophic presentation? They are out of luck as far as blood testing is concerned. So the fact is that we have erroneously relied on specificity (always picks up gluten sensitivity after it has caused villous atrophy, never having a false positive) instead of sensitivity (doesn’t miss gluten sensitive people even though they might be picked up early, even before full-blown celiac disease develops). Would a test relying on specificity rather than sensitivity be good enough for you, or your children? Consider the risk of not getting an early diagnosis versus going on a gluten free diet a few months or years prematurely. While I do not recommend anyone to have a biopsy (especially children) for diagnosis because of the shortcomings and invasive nature of this technique, I particularly do not want someone to have a biopsy showing villous atrophy, since by that time, associated bone, brain, growth, and/or gland problems are all but guaranteed. And here is another related problem: you have a positive blood test, but, if a small bowel biopsy comes back normal or nearly normal, you are told that the blood test must have been a "false positive" and that gluten is not your problem. Would you believe that, especially in light of the fact that most such people would have gotten the blood test in the first place because of a specific symptom or problem? Let’s hope not. All that means (positive blood test, negative biopsy) is that the gluten sensitivity (evidenced by antibodies to gliadin in the blood) has not yet damaged your intestines severely. Evidence of this comes from a study that I performed. We tested 227 normal volunteers with blood tests for celiac disease. Twenty-five of these people (11%) had either antigliadin IgG or IgA in their blood versus only one (0.4%) that had antiendomysial, antitissue transglutaminase, and antigliadin IgA in the blood. So for every one person in a population that has the antibodies that have 100% specificity for celiac disease of the intestine (antiendomysial and antitissue transglutaminase), there are 24 that have antibodies to gliadin that may not have celiac disease. So what is going on with the 11% with antigliadin antibodies in blood? Are these false positives (rhetorically)? You’re telling me that there is a disease called celiac disease and it is associated with antibodies to gliadin in the blood and sometimes it damages the intestine? But people with antigliadin antibody in their blood but no other antibodies do not have a clinically significant immunologic reaction to gluten? Do you see the problem? How can 11% be false positives? What about the 89% with none of these antibodies? You cannot equate having no antibodies at all (a negative test) with having antigliadin antibodies alone. If you have antibodies to gliadin, something is going on here. Where there’s smoke there’s fire. The purpose of this study was to test this hypothesis: that an antigliadin antibody alone does indicate the presence of an immune reaction to gluten that may be clinically important. Using tests for intestinal malabsorption and abnormal permeability (i.e., tests of small bowel function, unlike a biopsy which says nothing about function), we found that 45% of people with only an antigliadin IgG or IgA antibody in blood (without either antiendomysial or antitissue transglutaminase antibody) already had measurable intestinal dysfunction, compared to only 5% of people with no antibodies to gliadin in their blood. When we did biopsies of these people’s intestines, none had villous atrophy with only a few showing some early inflammation. Thus, having an antigliadin antibody in your blood does mean something: that there is nearly a 1 in 2 chance that functional intestinal damage is already present even though it may not be visible structurally at the resolution attained by a light microscope assessment of a biopsy. As mentioned at the outset, not all gluten sensitive individuals develop villous atrophy. Evidence for this has been around for a long time. In 1980, a medical publication titled "Gluten-Sensitive Diarrhea" reported that 8 people with chronic diarrhea, sometimes for as long as 20 years, that resolved completely when treated with a gluten-free diet, had mild small bowel inflammation but no villous atrophy. In 1996 in a paper called "Gluten Sensitivity with Mild Enteropathy," ten patients, who were thought to have celiac disease because of a positive antiendomysial antibody blood test, had small bowel biopsies showing no villous atrophy. But amazingly, these biopsies were shown to react to gluten when put in a Petri dish, proving the tissue immunologically reacted to gluten (which was likely anyway from their positive blood tests). Two other reports from Europe published in 2001 showed gluten sensitivity without villous atrophy (and hence without celiac disease). In one of these studies, 30% of patients with abdominal symptoms suggestive of irritable bowel syndrome having the celiac-like HLA-DQ2 gene but no antibodies to gliadin in their blood, had these antibodies detected in intestinal fluid (obtained by placing a tube down into the small intestine). Thus, in these people with intestinal symptoms, but normal blood tests and biopsies, the antigliadin antibodies were only inside the intestine (where they belong if you consider that the immune stimulating gluten also is inside the intestine), not in the blood. This is the theme we have followed in my research, as we are about to see. More proof that patients in these studies were [had] gluten sensitivity came from the fact that they all got better on a gluten-free diet, and developed recurrent symptoms when "challenged" with gluten. Although the gluten-sensitive patients in these studies did not have the villous atrophy that would yield a diagnosis of celiac disease, small bowel biopsies in many of them showed some, albeit minimal, inflammatory abnormalities. Yet, when a symptomatic patient in clinical practice is biopsied and found to have only minimal abnormalities on small bowel biopsy, clinicians do not put any stock in the possibility of their having gluten sensitivity. As much as I would like to take credit for the concept, you can see from these studies that I did not invent the idea that not all gluten sensitive patients have villous atrophy. It has been around for at least 23 years, and reported from different parts of the world. For many years there has also been proof that the intestine is not the only tissue targeted by the immune reaction to gluten. The prime example of this [is] a disease called dermatitis herpetiformis where the gluten sensitivity manifests primarily in skin, with only mild or no intestinal involvement. Now from more recent research it seems that the almost endless number of autoimmune diseases of various tissues of the body also may have the immune response to dietary gluten and its consequent autoimmune reaction to tissue transglutaminase as the main immunologic cause. A study from Italy showed that the longer gluten sensitive people eat gluten, the more likely they are to develop autoimmune diseases. They found that in childhood celiacs, the prevalence of autoimmune disease rose from a baseline of 5% at age 2 to almost 35% by age 20. This is a big deal if you think how much more complicated one's life is being gluten sensitive AND having an autoimmune disease. So preventing autoimmune disease is one very important reason why early diagnosis and treatment of gluten sensitivity is important. Early diagnosis before celiac disease develops also holds the potential of preventing other clinical problems such as malnutrition, osteoporosis, infertility, neurologic and psychiatric disorders, neurotube defects (like spina bifida) in your children, and various forms of gastrointestinal cancer. Another reason for early diagnosis and treatment is very straightforward and that is because many gluten sensitive individuals, even if they have not yet developed celiac disease (villous atrophy), have symptoms that abate when gluten is removed from their diet. Furthermore, from a study done in Finland, a gluten sensitive individual who reports no symptoms at the time of diagnosis can improve both psychological and physical well-being after treatment for one year with a gluten-free diet. Despite the common sense and research evidence that early diagnosis of gluten sensitivity offers many health advantages over a diagnostic scheme that can only detect the minority and end-stage patients, until now, the limitation was still in the tests being employed. As mentioned above, the main test used for primary (before symptoms develop) and secondary (after symptoms develop) screening for celiac disease, blood tests for antigliadin and antiendomysial/antitissue transglutaminase antibodies, are only routinely positive after damage to intestinal villi is extensive. As shown in a 1990 publication, this is because unless you have full blown, untreated celiac disease, the IgA antibodies to gliadin are only INSIDE the intestine not in the blood. Measuring antigliadin antibody in blood and intestinal fluid (obtained by the laborious technique of having research subjects swallow a long tube that migrates into the upper small intestine), researchers found that in untreated celiacs, antigliadin antibody was present in the blood and inside the intestine, whereas after villous atrophy healed following a year on a gluten-free diet, the antigliadin antibody was no longer in the blood but was still measurable inside the intestine in those with ongoing mild inflammation. An important conclusion can be drawn from these results, as these researchers and myself have done: gluten sensitive individuals who do not have villous atrophy (the mass of the iceberg), will only have evidence of their immunologic reaction to gluten by a test that assesses for antigliadin IgA antibodies where that foodstuff is located, inside the intestinal tract, not the blood. This makes sense anyway, because the immune system of the intestine, when fighting an antigen or infection inside the intestine, wages the fight right in that location in an attempt to neutralize the invading antigen, thereby preventing its penetration into the body. It does this with T cells on the surface of the epithelium, the intraepithelial lymphocytes, and with secretory IgA made with a special component called secretory piece that allows its secretion into the intestine. The excellent English researchers that made the discovery that they could detect the immunologic reaction to gluten inside the intestine before it was evident on blood tests or biopsies knew it was a breakthrough, testing it many times over in different ways, and further extending the clinical spectrum of gluten-induced disease to include a phase before the villi are damaged, so-called "latent celiac sprue". Furthermore, they developed this technique of assessing the intestinal contents for antigliadin antibodies into what they viewed as a "noninvasive screening test for early or latent celiac sprue" (what others and I would simply call "gluten sensitivity"). However, this was not exactly noninvasive, nor was it simple. It still required the patient to swallow a tube, followed by a complete lavage of all their gastrointestinal contents with many gallons of nonabsorbable fluid that had to be passed by rectum and collected into a large vat to be analyzed for the presence of antigliadin antibodies. While this was indeed a conceptual breakthrough, it practically went unnoticed by the medical community because the cumbersome procedure of washing out the intestine just could not be done in a normal clinical setting. To this day, I am not sure how many people even know that it was not me, but rather this well known celiac research group, led by the late Dr. Anne Ferguson, who pioneered the assessment of the intestinal contents as a viable and more sensitive source of testing material for the early reactions of the immune system to gluten. What we did in my research, is to refine and simplify the method of collecting and measuring these intestinal IgA antigliadin antibodies before they can be detected in blood. That is, instead of washing out the antibodies from the intestine, we allow them to be excreted naturally in the stool (feces). And so with that idea, and our ability to measure these antibodies in stool, as others before us had done for fecal IgE antibodies directed to food antigens, our new gluten (and other food) sensitivity stool testing method was born. It was actually my research of microscopic colitis that led me to discover that stool analysis was the best way of assessing for gluten sensitivity before celiac disease develops. Microscopic colitis is a very common chronic diarrheal syndrome, accounting for 10% of all causes of chronic diarrhea in all patients, and is the most common cause of ongoing chronic diarrhea in a treated celiac, affecting 4% of all celiac patients. However, from my published research, despite the presence of the celiac HLA-DQ2 gene in 64% of patients with microscopic colitis, very few get positive blood tests or biopsies consistent with celiac disease. Yet, small bowel biopsies revealed some degree of inflammation sometimes with mild villous blunting in 70%. According to the facts and previously discussed shortcomings of celiac blood tests, antibodies to gliadin are unlikely to be detected in the blood in these patients because they lack villous atrophy. So negative blood tests for antigliadin antibodies per se did not, in my mind, rule out the possibility that these patients with microscopic colitis, a disease that under the microscope looks like celiac disease but of the colon, and that affects many celiac patients, were not gluten sensitive themselves. But as Dr. Ferguson's research revealed, these antibodies might be detectable inside the intestine. And since we surely were not going to perform that cumbersome intestinal lavage test in my patients, we decided to see if we could find these antibodies in the stool as a reflection of what is coming through the intestine. Here's the first set of data that we found showing the superior sensitivity of stool testing versus blood tests for antigliadin IgA antibodies. In untreated celiac disease patients, we found a 100% positivity in the stool versus only 76% in blood. In hundreds of microscopic colitis patients since tested, only 9% have antigliadin antibody in blood but 76% have it in stool. And the same is true of 79% of family members of patients with celiac disease; 77% of patients with any autoimmune disease; 57% of people with irritable bowel syndrome-like abdominal symptoms; and 50% of people with chronic diarrhea of unknown origin, all of whom have only about a 10-12% positivity rate for blood tests (like normal volunteers). Thus, when you go to the source of production of these antibodies for testing, the intestine, the percentage of any population at a higher than normal genetic and/or clinical risk of gluten sensitivity showing a positive antigliadin stool test is 5 to 7.5 times higher than would be detected using blood tests. In normal people without specific symptoms or syndromes, the stool test is just under 3 times more likely to be positive than blood (29% vs. 11%, respectively). That's a lot more people reacting to gluten than 1 in 150 who have celiac disease. 29% of the normal population of this country, almost all of whom eat gluten, showing an intestinal immunologic reaction to the most immune-stimulating of dietary proteins really is not so high or far fetched a percentage, especially in light of the facts that 11% of them display this reaction in blood, and 42% carry the HLA-DQ2 or DQ8 celiac genes. Why is this so important? Because some people with microscopic colitis never get better when they're treated, and most autoimmune syndrome syndromes only progress with time, requiring harsh and sometimes dangerous immunosuppressive drugs just for disease control. If the immune reaction to gluten is in any way at the cause of these diseases as research suggests, and if we had at our disposal a sensitive test that can diagnose this gluten sensitivity without having to wait for the intestinal villi to be damaged, then treatment with a gluten free diet might allow the affected tissues to return to normal or at least, prevent progression. We now have that test in fecal antigliadin antibody. Just a few weeks ago [a few weeks before June, 2003] we completed the first follow-up phase of our study: what happens when a gluten sensitive person without villous atrophy goes on a gluten-free diet for one or two years. While I am still gathering and analyzing the data, most of the subjects reported a much improved clinical status (utilizing an objective measure of symptoms and well being). Not everybody gets well, because sadly not everyone stays on a gluten-free diet (as they sometimes admit on the surveys). Some people have the misconception that if they don’t have celiac disease, but "I just have gluten sensitivity" then maybe they do not have to be strict with their gluten elimination from the diet. I do not think that is the case. Although a gluten free diet is like anything: less gluten is not as damaging as more gluten, but certainly no gluten is optimal if a gluten sensitive person desires optimal health. Of the first 25 people with refractory or relapsing microscopic colitis treated with a gluten-free diet, 19 resolved diarrhea completely, and another 5 were notably improved. Thus, a gluten-free diet helped these patients with a chronic immune disease of a tissue other than small bowel (in this case the colon), who have been shown to be gluten sensitive by a positive stool test in my lab. The same may be true of patients with chronic autoimmune diseases of any other tissue, but who do not have full-blown celiac disease. Gluten-free dietary treatment, sometimes combined with dairy-free diet as well, has been shown to help diabetes, psoriasis, inflammatory bowel disease, eczema, autism, and others. Thus, my approach, and I believe the most sensitive and most complete approach, for screening for early diagnosis and preventive diagnosis for clinically important gluten sensitivity is a stool test for antigliadin and antitissue transglutaminase IgA antibodies (IgG is not detectable in the intestine) and a malabsorption test. The malabsorption test we developed is special, because you no longer have to collect your stool for three days; we can find the same information with just one stool specimen. Combining this stool testing with HLA gene testing, which we do with a cotton-tipped swab rubbed inside the mouth, is the best diagnostic approach available. Who should be screened for gluten sensitivity? Certainly family members of celiacs or gluten sensitive people being at the highest genetic risk. For the most part, all of the following patient groups have been shown to be at higher risk than normal to be gluten sensitive: chronic diarrhea; microscopic colitis; dermatitis herpetiformis; diabetes mellitus; any autoimmune syndrome (of which there is an almost end-less number like rheumatoid arthritis, multiple sclerosis, lupus, dermatomyositis, psoriasis, thyroiditis, alopecia areata, hepatitis, etc.); Hepatitis C; asthma; chronic liver disease; osteoporosis; iron deficiency anemia; short stature in children; Down's syndrome; female infertility; peripheral neuropathy, seizures, and other neurologic syndromes; depression and other psychiatric syndromes; irritable bowel syndrome; Crohn's Disease; and people with severe gastroesophageal reflux (GERD). Autism and possibly the attention deficit disorders are emerging as syndromes that may improve with a gluten- free (and additionally casein-free) diet. A diagnosed celiac might be interested in our testing to know (after some treatment period no shorter than a year) that there is no on-going damage from malabsorption, for which we have a test. If a celiac is having ongoing symptoms or other problems, a follow-up test should be done just to be sure there’s no hidden gluten in the diet, or something else that could be present, like pancreatic enzyme deficiency which often accompanies celiac disease, especially in its early stages of treatment. Historically, with respects to diagnostic methods for celiac disease, from 100 A.D., when celiac disease was first described as an emaciating, incapacitating, intestinal symptom-causing syndrome, to 1950, we had just one diagnostic test: clinical observation for development of the end stage of the disease. Then in 1940 to 1960, when the discovery of gluten as the cause of celiac disease occurred, the best diagnostic test was removing gluten from the diet watching for clinical improvement. It was during this period that the 72-hour fecal fat and D-xylose absorption tests were developed as measures of gluten-induced intestinal dysfunction/damage. In the mid- to late 1950's, various intestinal biopsy methods were pioneered and utilized, showing total villous atrophy as the diagnostic hallmark of celiac disease. You’ve heard the intestinal biopsy called the "gold standard"; well as you can see, it is a 50 year-old test, and thus, the "old" standard. It was not until the 1970's and 80's (and improved upon in the 1990's) that blood tests for antigliadin and antiendomysial/antitissue transglutaminase were developed, but again these tests like all methods before, can reliably reveal only the "heart attack" equivalent of the intestinal celiac syndrome: significant villous atrophy, bad celiac disease. We are in a new century, a new millennium, and I have built upon what my research predecessors have started; mostly on the work of researchers who laboriously put down tubes and sucked out intestinal fluid for testing for antigliadin antibody when it was not present in blood. We now know that a stool test for antigliadin antibody is just as good and much simpler. The wide-reaching ramifications of knowing that so many more people and patients are gluten sensitive than have ever been previously known has led me to assume a professional life of medical public service. To do so, I started a 501
  14. Dear Interval, You wrote: "However the weird symptom [when eating glutenous foods] is breathlessness, almost like having asthma where I can't seem to get enough air no matter how deep I breathe. This has got both myself and my doctor puzzled, as shortness of breath is not usually associated with digestive disorders. All the normal lung function tests have come back just fine. But the breathlessness and abdominal pain/bloating etc definitely seem to happen together." I have some ideas about what you may have going on here. You will need to check with your doctors to see if I'm right or not. You may have a combination of anemia, which can cause shortness of breath, PLUS, a type of GASTRIC REFLUX, that can also cause shortness of breath. Here's a possible scenario: When a person has gluten intolerance, and is still eating glutenous foods, these glutenous foods can upset the stomach (in addition to harming the small intestine, etc.). When the stomach gets "upset", this can lead to GASTRIC REFLUX (and the abdominal pain & bloating might also add to the gastric reflux). There are different kinds of reflux. One type of reflux causes heartburn symptoms. Another higher up type of reflux can cause BREATHING PROBLEMS, including asthma, &/or VCD/Vocal Cord Dysfunction/laryngospasm. This 'high up' type of gastric reflux is called LPR/Laryngeal Pharyngeal Reflux. The word laryngeal refers to the "larynx" (voice box). The word pharyngeal means throat. Reflux means a backwards movement of liquid from the stomach, back up into the esophagus. LPR usually doesn't cause 'heartburn' symptoms. But, LPR can cause BREATHING problems. When you eat glutenous foods, do you ever have burps that contain a little "vomit", but you may not be nauseated, and there may be no warning of the liquid burp? Do you ever have burps that taste bad, as if they came from your stomach? These are subtle symptoms of LPR. I urge you to go gluten-free, for at least one month, and see if you get better. You can also send a stool sample to Dr. Fine's "EnteroLab" for a non-invasive way to see if you are gluten intolerant or not. Here's a link to Dr. Fine's website: http://www.finerhealth.com There can also be other food sensitivities that may be factors, in your case. Might you be sensitive to CORN, SOY, COW'S MILK? I have some "gastric reflux tips", called Appendix B, on webpage 10 of my website. Here's a link to webpage 10: http://cantbreathesuspectvcd.com/page10.html In these "gastric reflux tips" are many ideas, including some about gluten sensitivity. I hope these help some. Sincerely, Carol http://cantbreathesuspectvcd.com
  15. Thank you both! I want to give credit to "JCC", the lady who first alerted people about Dr. Fine's innovative stool sample testing, over at the Gluten Sensitivity/Celiac Disease forum, at http://www.braintalk.com "JCC" posts on several forums, including here, and also at the Delphi forums. She tirelessly gathers info, and shares it with others! Carol http://cantbreathesuspectvcd.com P.S. The connection between my VCD website and gluten sensitivity is this: VCD/Vocal Cord Dysfunction (laryngospasms) can be caused by many different things. One common cause of VCD is GASTRIC REFLUX. And, I had been contacted by several people whose reflux was at least partly due to as yet undiagnosed gluten intolerance! So, food sensitivities can lead to reflux, and reflux is one cause of VCD. There's the connection. So, I've added info about gluten intolerance to my website, because of this!