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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About radman

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  • Birthday 08/15/1963

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  1. Happy birthday and may God bless you today!

  2. Hi all. Yes, I do think my gut will "complain" when it gets a level of gluten which will cause damage. It will be very easy for me to know, since my bowels have been so different ever since going gluten free. I think I'll eat a nice big Sierra Turkey on Focaccia at Panera Bread for my challenge. I wouldn't say I don't have villi damage, I'm sure I did with my previous diet. But enough healing apparently occurred within a few days for my malabsorption to completely abate. However, if I find that my symptoms after a gluten challenge are no more severe than they were with my previous glutenous diet, I may occassionally cheat. I wouldn't do this often, because I know that it will cause some villi damage. It will be minor, however, compared to the 2-3 years of daily high dose gluten intake and subsequent damage I got before I figured this out. Again, I'm not suggesting anyone else do this. It's just my own thinking. If my symptoms increase then I won't be able to do it.
  3. Well it's been over 2 weeks now gluten free. My partner brought in our Tuesday morning tradition of Einstein bagels with cream cheese for the whole staff. I had to sit there and watch everyone eat 'em. I sure miss my toasted everything bagel with sun-dried tomato cream cheese. Came close to caving, but I held out and munched on some M and M's (great breakfast, huh?). Then this evening I had to make dinner for the kids, and of course I selected my old favorite, and a fav of dad's making dinner everywhere, Spaghetti-O's (with little meatballs of course). I love those things, but again I was strong. Tempted but strong. My normal, nontoxic bowel habits have kept me on the straight and narrow. Next week though, I may give myself a little challenge, perhaps a bagel, and see how I react. The amount of gluten I can tolerate is still something I intend to find out. For those who are worried about "silent" damage, I am not concerned for my personal situation. I had clear GI symptoms with gluten and they went away without gluten. I'm sure I will get them back at whatever "dosage" of gluten my gut cannot tolerate. Now if I had no symptoms intially, and came upon my diagnosis based on screening, or a family member with the disease leading to testing, I would be worried. In that situation my celiac would be silent, and I could not rely on my symptoms to guage the damage. But since my symptoms are clear, I think in my case they are a reliable indicator. Hey Bernses, sorry about the mistake. And yes, the laparoscopic technique causes much less scarring, I wouldn't worry about this. Good luck with the surgery, and
  4. The newer surgery is done through a laparoscope, so it is minimally invasive, and highly effective. It recreates the lower esophageal sphincter with a strip of stomach muscle. Stomach contents, whatever their pH can no longer reflux into the esophagus. Bernses, your holistic practitioner has given you dangerous advice. You are definitely not better off without proton pump inhibitors if you have GERD. I did not mean to imply this. Acid reflux definitely causes damage to the esophagus. The proton pump inhibitors stops this acid damage which can lead to scarring, obstruction, ulceration, as well as cancer. My point was that long term use, while it does prevent the acid damage, may not ultimately prevent all the cancers, and it has other problems, such as the gastrin problem I mentioned. Just stopping the prevacid without an effective alternative treatment for the GERD, though, is dangerous. The surgery is one such effective alternative treatment. Another avenue that should be explored is testing for H. pylori, the bacterial infection responsible for much acid-peptic disease. Treatment of H. pylori (if present) with antibiotics may also eliminate heartburn and reflux sypmtoms. In my own case the reflux symptoms stopped with treatment of my celiac with gluten free diet. I know longer need any prevacid. I realize that not everyone with celiac has resolution of reflux with diet, but some do. If the reflux doesn't stop with gluten free diet, and H. pylori is not present, you might be stuck with long term proton pump inhibitor use. In this case the surgery is a good option, but you need to see a surgeon with plenty of experience with the laparoscopic technique.
  5. raven: I have been thinking the same thing. Not to screen all patients, just those that may be related to celiac. The largest group of patients would be lower esophageal adenocarcinoma. I've been considering sending celiac panels on those patients to see if there is a correlation. Bernses: Yes, esophageal cancer has a poor prognosis overall. Most patients present with fairly advanced disease. Surgery cures very few patients (<20%). Chemotherapy and radiotherapy with or without surgery increases the odds to perhaps 30%. Still, 70% of patients ultimately succumb. Prevention is clearly the best bet. Again, I think a surgical fundoplication may be the best way to do this if you have chronic severe reflux. jthomas: Thanks for the pizza crust link. Have you used rice flour or garbanzo bean flour? Today I had lunch at Chipotle and had a burrito bowl. What a great restaurant for celiacs! So many choices. By the way, I mentioned to the dietician at my office today that I self diagnosed celiac. She told me she has been wondering if she may have it since she has had problems with indigestion and gas. She's gonna go gluten free and see if her symptoms improve
  6. Hi folks, I have a thought for all those with severe reflux- consider getting an evaluation for surgical correction of the reflux. The current procedure is called a Laparascopic Nissen Fundoplication. Long term use of proton pump inhibitors (Aciphex, Nexium, Prevacid, Prilosec) is concerning for many reasons. In fact, I was on them myself for about 6 years, and my desire to stop them is partly what led to me finally diagnosing my celiac. I have been struck by the rapid rise in the incidence of lower esophageal adenocarcinomas in my practice. Nationally there is an unmistakable spike in these cancers over the past 10 years. They are thought to be related to chronic reflux, but if the proton pump inhibitors prevented these cancers they would be decreasing not increasing. There is a theory that "alkaline" reflux (the stomach acid is eliminated by the drug, but the stomach contents, now alkaline, continue to reflux into the lower esophagus) may explain this. This is conjecture at this point, but the rapid increase in esophageal cancer is fact. The surgery fixes the problem which is not acid, it is that stomach contents can reflux into the esophagus. A mechanical problem should be fixed with a mechanical solution. These drugs also cause diarrhea, and they also result in a chronic state of hypergastrinemia (due to lack of the normal feedback loop from stomach acid). This hypergastrinemia may be associated with tumors called neuroendocrine tumors (such as carcinoids). Forget the details if this is Greek to you, but my advice is not to use proton pump inhibitors for prolonged periods (years) if possible. These drugs disrupt a complex physiologic system in our bodies, and we do not know all the possible health ramifications of this. Short term or intermediate term this is not a problem. If you have reflux requiring use of proton pump inhibitors for many years or indefinitely, then the surgery is an appealing option. I think I'll try those Kinnikinnick English muffins
  7. Hi Franceen, Please let us know about the results from the pathology of your skin biopsy. I've read that up to 30% of patients with DH have negative antibody tests, so you may yet be correct in your diagnosis. I would have expected it to improve with gluten free, even if you occasionally cheat. Perhaps you are just very sensitive. By the way, the biopsy in the case of DH (if properly taken from adjacent uninvolved skin) is much more specific than the biopsy of small intestine for celiac. The skin biopsy is subjected to immunofluorescence "staining" for IgA. The result in DH shows a "granular" pattern of IgA deposits in the dermal papillae (upper layer of dermis). This is diagnostic and highly specific. At least if it is positive for DH you will have a diagnosis and specific treatment. I also crave bread products, or I should say I really miss them. Tonight I grilled hamburgers on the grill for the family. I had mine on a gluten free roll, but it was disappointing, even when I tried to camoflage the taste of the roll with a big burger and a big slice of onion. It just gave me bad breath. Plus, I went for a motorcycle ride with some buddies today. Stopped for a quick beer. I debated ordering a scotch, but that didn't sound wise or appropriate for the circumstance. I had a Coke. Really missed my Guinness. Oh, one last thing- you inquired about my gender- As Austin Powers would say, "I'm a man, man". (otherwise I guess I would be radwoman )
  8. OK, here is the very unscientific symptom survey (VUSS) I tallyed up the symptoms of a total of 20 of us (n=20), any symptom by only one person and no others was dropped, and infants/children were not included since the symptoms are quite different. Also one or two of us who clearly had multiple associated complicating illnesses were not included because it was impossible to tease out the celiac symptoms from the other illnesses. I grouped them in categories that make sense to me. Here they are: GI Diarrhea 16 80% Foul Stools 6 30 Gas/Bloating 13 65 Borborygmi 7 35 Constipation 6 30 Cramping/abd pain 10 50 Nausea/Vomitting 10 50 GERD/heartburn 10 50 anorexia 2 10 Malapsorption/Nutritional Osteopenia/porosis 4 20 Dental 6 30 Anemia 6 30 Pernicious Anemia 2 10 Weight Loss 4 20 Weight Gain 5 25 Autoimmune peripheral neuropathy/face numb 6 30 thyroid (Hashi/Graves) 2 10 ataxia 4 20 DH (dermatitis herpetiformis) 3 15 Unclear Brainfog 14 70 fatigue/weakness 10 50 migraines 3 15 Bone Pain/Gen Pain/neck,hip 14 70 Depression/anxiety 11 55 itchy skin 3 15 joint pain 3 15 mood swings 2 10 insomnia 3 15 mouth ulcers 2 10 Hypertension 4 20 palpitations/tachycardia 2 10 allergies 2 10 hypoglycemia 2 10 asthma 2 10 The most common are: Diarrhea, brainfog, and generalized pain, and gas/bloating. The frequency of brainfog suprised me. Perhaps it is the exorphin issue mentioned by gfp. In some cases I took the liberty of categorizing elaborately described symptoms into their closest category. Some symptoms were probably underreported (eg. foul stools, many probably just included this with their complaints of diarrhea). Some symptoms are so general/common/or vague that it is hard to know whether they are related to the celiac specifically, as a byproduct of being generally ill, or unrelated at all (eg. depression,mood swings,). Some symptoms sound like they may be a variant process like a true allergy to gluten or wheat (eg. tingling around mouth, asthma/bronchospasm, tachycardia). Others are very common and clearly related to celiac but difficult to explain (eg. brain fog). Finally, I think it is likely that the message board self-selects for more severe cases of celiac (ie. it is more likely that people with severe problems would frequent the board for info and support than someone with less severe symptoms). Despite all of these limitations, I hope it is useful to look at the varied nature of problems we are all experiencing. sorry, the cutting and pasting didn't work too well. The first number is the number of reports of the symptom, the second is the percentage of people with that symptom
  9. Hi everyone, I plan on tabulating all of this when I get a minute. Interesting no one has mentioned osteopenia or osteoporosis (unless I missed it scanning the posts). Has everyone had the recommended DEXA scan to test bone density?
  10. Good morning all, Karen: yes, the article you linked is a good one. It also emphasizes the abnormal IEL's as a major factor in refractory celiac, just like Fasano's article. It also discusses the same treatments- elemental diet, immunosuppressive agents, and possible chemotherapy. There are other potential treatments that come to mind as well, particularly the newer antibody therapies for lymphoma such as rituxan. There is hope in all of this. Several have asked why I haven't had formal diagnostics, such as antibodies/genetic testing/endoscopy. There are 3 answers. First and foremost, I have had resolution of virtually all of my symptoms as soon as I started the diet. Second, I do plan on using enterolab for confirmation, I just haven't been in a big hurry because of the above. Third, I am a man and a doctor and therefore a terrible patient. By the way, several have also commented about me being more likely to be believed about my self-diagnosis because of the MD. This is probably true, but I miss the point. Who cares about being beleived or not? I suspected celiac, went on the diet, got dramatically better, end of story. Believe or not believe doesn't seem relevant. Today I've been wondering about the various symptoms and problems attributed here to celiac. Since I have had only GI symptoms, I was surprised to learn about all the other associated problems, such as gluten ataxia, for example. So how about a list of problems associated with celiac for each of us, but please try to be very selective and include (succinctly) just the problems you feel absolutely sure are related to your celiac and gluten ingestion. Mine are simple, so I'll start: Low Grade Intermittent Diarrhea Gas Foul stools/malapsorption Borborygmi (hyperactive stomach growling)
  11. I know what you mean about the cost, but an office consultation shouldn't cost more than $175-200. Perhaps he could just review your history and make recommendations that could be carried out by your physician in Canada. With your degree of difficulty it might be worth the time/effort/and money (I certainly don't know him personally, just that he is a recognized authority). Here's an abstract from one of his papers. There is likely new informaton since this 2001 publication: Management of Refractory Celiac Disease Karoly Horvath, MD, PhD, Alessio Fasano, MD, Division of Pediatric Gastroenterology and Nutrition, Department of Pediatrics, University of Maryland School of Medicine, Baltimore, Maryland. Abstract and Introduction Abstract A small percentage of patients diagnosed with celiac disease fail to have a long-term favorable response to a strict gluten-free diet. These individuals continue to have symptoms and histologic abnormalities or have symptomatic relapse despite treatment with gluten-free diet and ultimately develop a potentially life-threatening disease known as refractory sprue. Based on data reported in recent studies, the majority of patients with refractory sprue have abnormal intraepithelial lymphocytes. The current hypothesis is that refractory sprue represents a transition state to intestinal lymphoma. The true prevalence of this disease entity is unknown. Future multicenter trials are therefore warranted to estimate its prevalence and establish clear therapeutic guidelines. Don't mean to get to personal, but thought I'd pass it on... Have a good night.
  12. I don't understand why you say you don't beleive in refractory celiac. Collagenous colitis would have nothing to do with persistently flattened villi in the small bowel, even though it is clearly a problem in its own right. Dr. Fasano has written about refractory celiac. I won't go into the details, but it may be worth your while to see him for a second opinion at the University of Maryland.
  13. Karen: I understand that you have refractory celiac based on persistently flatenned villi, but do you have persistent malapsorption/diarrhea and if so how severe? What type of evaluation have you had regarding the cause of the RS (refractory sprue)?
  14. The variability of celiac is clear, I suppose it is just like other diseases where there are different levels of intensity. If you think about seasonal allergies for example, some have a little sneeze now and then, some can't go outside without an asthma attack. The other thing we know is that the extent of intestinal involvement varies. Some/most only have involement of the duodenum and upper jejunum, others may have involvement of the lower portions of the small intestine (which are not biopsied), others may have involvement throughout the entire small intestine. .
  15. Hi Vydor, I think the issue of cross reactivity is getting confused because the same term is being applied loosely to very different issues. The thread you linked was talking about your body "cross reacting" to proteins similar to gluten. What I have talked about in reference to cross reactivity was something entirely different, namely that the antibodies made against gluten can "cross react" with other structural proteins in your body (eg. joint lining, cerebellar cells, etc.). The first is a bit of conjecture, and I haven't seen any real evidence of this phenomenon (not that it couldn't exist, but it is unlikely-immune responses don't work that way). The latter is what the term "autoimmune" is all about. It is a well documented issue with all of the "autoimmune" diseases including lupus, Hashimoto's thyroiditis, rheumatiod arthritis, scleroderma, and apparently also celiac disease. Anyway, since we're talking serious again, I've been thinking about an issue touched on in the thread but not discussed in detail: The variability of celiac disease. Some here have posted that celiac is celiac is celiac. But if you think about it even a little bit, this cannot be true. We all have widely differing symptoms and severity of symptoms. Why is this?