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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com 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 Celiac.com Store.

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  1. Past hour
  2. I just want to make sure I understand -- your husband is concerned and wants to get an endoscopy done, but he's not too worried about cross contamination?
  3. Today
  4. Going to copy and paste a rant I did quoting multiple people from the community, "Celiac Disease, people tend to think that it is a diet related issue and just gives us a stomach ache, well its not, A LITTLE IS NOT ALRIGHT! Celiac disease is an autoimmune condition and that means the bodies own immune system attacks itself. So anytime we eat even a tiny amount of gluten, the same immune system that defends us from germs and pathogens springs into action to protect us from the gluten. But the attack on the gluten is misdirected to our own body tissues instead (In my case my nervous system, brain, and intestines). The immune system doesn't give up fighting invaders quickly, it will continue making new antibodies and killing them there gluten critters until the last vestige of the horse they rode in on is gone. And then it may keep producing attacking antibodies for a few weeks or months later just in case. When the immune system can find and destroy germs that are too small to be seen with the naked eye, you know it can react to a tiny crumb of gluten. We could feel the effects within hours or we could feel them weeks to MONTHS after a cross contamination exposure (dipping a wooden spoon from a pot of whole wheat pasta water into a gluten-free pasta pot). We can develop other AI issues and those that occur most often are Hashimoto's Thyroiditis and Type 1 Diabetes and could even develop cancer. Gluten as we mean it in relation to celiac disease is a protein molecule in wheat, rye and barley, and products derived from these such as Malt, Maltodextrin, Vinegar, Food Starches, the list goes on as to what all it can be found in by other names. And think of it like this, it is a protein, like your blood, do you think you can clean up blood good enough that it can not be swabbed for and picked up by a forensic team? Gluten is the same way with cleaning up, almost impossible to clean a porous surface and just wiping it off does not work" I take it you have already read the newbie 101 page and a few of the stories here, I have a few links to some places to get foods, brands that make gluten-free versions of processed food staples, etc to make the transition to a gluten-free household easier. Though I would normally just suggest a whole food diet, I think if you use the mindset your just changing brands and only buying gluten-free certified items it will make it easier for the common person. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/ I wish you luck and looks like JMG has provided some great resources and information.
  5. My advice is is always get and retain copies of all lab tests. Keep notes on doctor visits and outcomes. I have kept 20 years of records. My new doctors love it. I also put a family medical history (first names only) for my extended family. It has helped so many!
  6. Thanks everyone. I really appreciate it. I will def get this panel. I'm really not sure if all of that was included. I just remember the doctor calling it celiac sprue. And of course she didn't give me a copy because it was "negative".
  7. Hi Mary Anne, I'm going to repeat.... Do not give up eating gluten until all testing is completed!!!!!! 60% of those with dh test negative on the blood tests yet we do have the intestinal damage. It tends to be patchier in us though. We tend to have milder, fewer GI issues than celiacs who don't have dh. A dh biopsy, as you have read on here, is taken on clear skin adjacent to an active lesion. Yes, dh can go away (stop itching) in 2 weeks of gluten free orrrrrrrrrrrrrrrrrrrrrrrrrrr it might take years. DH can come & go at any time, even if you're eating gluten -- it waxes & wanes; that is until the day it decides to stay & make every hour & day & month of your life miserable. Not everyone gets the stinging or burning or maybe I should say not everyone at every stage. A dx of dh IS a dx of celiac & no further testing is needed.
  8. My eyes have a horrible inflamed itchy cracked wrinkly looking skin around them. And I'm wondering if anyone else has this problem.
  9. We travel too. I was just diagnosed last year so I am still learning, but I find that it is easier to stay in places with a kitchen and not eat out for every meal. It's too much stress! The way I see it is that there are 2 kinds of travel: to see family and for other reasons. When we travel to see family, we usually stay at a house with someone we know. I travel with a gluten-free box - it contains some important spices, a gluten-free pan or two, a good knife, small cutting board. Since you don't use this stuff too often, the stuff can be cheap - Walmart or the Dollar store. I eat on paper plates or bowls and eat very simply. The travel for "other reasons" is much harder. This is travel due to work, fun, funerals, weddings etc. At least in our case, we end of staying in hotels. At a minimum, get a place with a small fridge and microwave. Better yet, get a place with a full kitchen. Good luck!
  10. I forgot to ask earlier...have you tried tryptophan to help with insomnia? It helped me sleep. It's part of the B complex of vitamins. With impaired absorption, some Celiacs find taking supplemental vitamins the only way to regain their health. In some cases, it is impossible to eat enough to make up the vitamin deficits. For example, some have to receive vitamin B12 shots, or take vitamin D supplements. I agree you should be careful with herbal supplements as they might interact or have undesired side effects. However, passion flower has been proven to be as effective as prescribed MAOIs. And chamomile has shown to be helpful with cold sores. Cycling Lady's advice for exercise is great, too, even if all you can muster is some simple yoga stretches. She amazes me running marathons! You go, girl! Keep learning about celiac disease and tapering what you learn to you. Everybody has a different conglomeration of symptoms and reacts differently to things, but we're all here to help and support each other.
  11. T.S. I went through the same thought process (still am I guess) I wondered how I could feel worse, sleep worse, over the top anxiety, panic attacks, depression among other things, AFTER I went gluten-free. I can't explain it, but it happens. People talk about a withdrawal and maybe that's what it is. From listening to stories of people who withdraw off drugs or what-not, I swear it was the same thing. I had been taking blood pressure medicine for years and found out it may contain gluten, so I spoke with my Dr. and I quit taking it and monitored my BP on my own. Been fine since, not even borderline high. I am only taking a small dose of medication for PTSD, and I plan on talking to my VA Counselor about stopping that soon too. I went about 7 months with no cannabis and just recently have been able to introduce it back in. I get the high CBD low THC strain and it works well. And yes, I believe it helps me sleep. That's all I use it for. During the 7 or so months I wasn't using it, I had to quit because my mind would race and I couldn't stop. Not so much paranoid, just panicky and always nerved up. I thought I was loosing my mind because I had no control over my emotions. Never had that before in my life. I would sob uncontrollably, think I was dying and it was because of poor decisions I had made in life and literally lay in bed all night with my eyes wide open. I had Lorazepam 0.5mg, and that would help, but I did not want to get "hooked" on that so I would keep it on my nightstand with water as kind of a security blanket. There were times that I would find myself in the backyard at 2 AM for no reason. Needless to say, my wife was very concerned and had our son come stay with me at those times. Like I said in my other post, it was thee hardest thing I have ever had to deal with, hands down. It sounds like you have a great support in your parents. That is huge. I searched for support groups, just so I could talk to someone who knew what Celiac was. Never found one in our area, but they are out there. This site has been my go-to since day one. In the 10 months since diagnosis, I have meet 3 people with celiac. And in talking to them, none of them had the same symptoms as me. They were all different. Crazy disease. Hang in there, and do not give up. Do not let it beat you. You got this! DH
  12. Sounds like you have a great plan. Do treat your daughter to some gluten-free goodies once healed. It can be lonely not be able to eat cake at a birthday party. We eat mostly Whole Foods (ugh, spell check....not the store!) but I keep goodies in the freezer Freddy for a party. I make them myself. Travel? Car, plane? We do both. At my parent's house I keep a bin of kitchen items that I keep stashed away from other family members. I oversee all food prep, because if you do not live the gluten-free every single day, mistakes can be made. Try reading through our Travel section for more great tips. Here is one thread:
  13. I just want to add -- exercise. It can help you not only physically, but mentally too. It has helped me with insomnia.
  14. This sucks., You may be going through gluten withdrawal. It does exist and many (most) of us went through it for varying lengths of time & to varying degrees of severity. Just use the Google search box for this site & you will come up with hundreds of threads on the subject. Personally, I went through it for about 2 months. Lots of people only go through it for one or two weeks. Are you sure all those supplements you're taking are gluten free? Supplements like what you're taking are not regulated you know. Please read the Newbie 101 pinned to the top of the Coping forum and your mom might want to read it too so you guys can protect yourselves from cross contamination. Personally, and you can disagree with my opinion, I would not be taking allllllllllllllllllllllllllllllll the stuff you listed. That's a LONG list! I believe one needs to be cautious & very careful taking a whole bunch of supplements (even if they are "natural"). One supplement reacts with another supplement & yadda, yadda, yadda...... IMO simple is best and getting the vitamins & minerals from foods is the best way to go. Otherwise you can get so tangled up in your shoelaces that you can't figure out what is causing this, what is making you feel that, and so on & so forth.
  15. I firmly believe in "leaky gut". Even Dr. A. Fasano, a leading celiac researcher (Ped GI) at Harvard/MA General discovered Zonulin which may be contributing to leaky gut. But.....that is as far as science has gone. There is so much we do not know yet. You should consider a celiac retest. Ask for the entire panel. Why? I am one of the celiacs who did not get a positive on the more commonly used celiac test (Ttg). Luckily, mynGI ordered the entire panel or my diagnosis would have been missed. My biopsies revealed moderate to severe intestinal damage.
  16. lumalist, It is not common (considered rare) because mainly there is not a lot of studies about this topic but I want to thank Knitty Kitty for these references. But it is really more about awareness. AWOL Cast Iron stomach talks about here their reaction to corn. Follow this thread "that darn corn" Here is the link as quoted from PedMed that explains how some Celiac's also react to corn in their diets triggering possibly similar antibiotic affects. https://www.ncbi.nlm.nih.gov/pubmed/22298027 Entilted "Maize prolamins resistant to peptic-tryptic digestion maintain immune-recognition by IgA from some celiac disease patients." And too your 2nd question. Yes it really can be Pellagra. Again this mainly more about awareness since most people are not aware it (Pellagra) often occurs together with a Celiac diagnosis. The knowledge of how Pellagra presents these days is very limited since doctor's like they are told in Celiac's patients (at least too a few years ago) were told they (doctor's) might only see one two Celiac's in their practices in their lifetimes. And so it becomes a self fulfilling prophecy and they don't (or didn't) until their was more education about the awareness of how prevalent Celiac really turned out to be. Let's put this way -- A lot more prevalent than doctor's realized. And so is Pellagra today because they only diagnosis it if you are in a subset of the population and the awareness/knowledge of Pellagra in a Celiac is 10 or 15 years behind the awareness of where Celiac is today. The International Journal of Celiac Disease makes note of this in their research. When the discuss how Pellagra and Celiac disease are related (Co-Morbid) in a Celiac diagnosis are surprised to find that in 58% of Celiac's -- can also be diagnosed with Pellagra. See this link http://pubs.sciepub.com/ijcd/3/1/6/ Quoting 3. Pellagra and celiac disease "The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40]." Yet they are unsure why this is? Because doctor's are still not aware that a Niacin deficiency can trigger some of the same symptom's now (today) exclusively proscribed to those consuming gluten. But the above research says (as seemingly has been your experience) corn can also trigger an antibody response even when you are 100 percent gluten free. Why is this? Or How can this be? Gluten free discusses why this possible when they talk about a Niacin deficiency in Celiac patients. https://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/ Right in the middle of their great work on what Pellagra a Niacin deficiency in Celiac's looks like they explain how a Niacin deficiency itself can cause our membranes (leaky gut) to become weak and sensitized to gluten and other grains including corn Quoting "Intriguing animal research by Sandhur et. al. has shown that niacin deficiency itself sensitizes the intestinal mucosa of rats to gluten in wheat, barley, rye, oats and corn and induces susceptibility to gluten toxicity by means of cellular dysfunction.3 Human research needs to investigate this effect of niacin deficiency in human celiac disease." If you look up the Sanhdur et. al research they quote it is over 30+ years old and I agree completely indeed quoting again more "Human research needs to investigate this effect of niacin deficiency in human celiac disease." -- Which is why Pellagra - a Niacin deficiency -- can/could be the root cause of your reaction to the corn still in your diet. More research was done 25+ years ago on this very fact of how a Niacin deficiency can cause our membranes to become inflamed. I want to thank Knitty Kitty here again because she dug up this research first. See how the "Pathological effects of pellagra (a Niacin deficiency) on the esophagus" improved on Niacin supplementation. https://www.ncbi.nlm.nih.gov/pubmed/2084620 The esophagitis they described might be called Eosinophilic Esophagitis (EoE) today and quoting "The esophagitis improved in five patients following six to seven days of vitamin therapy." Over half of those who had an inflamed throat improved in less than week. So they stopped the study early. Who knows how much better they would of gotten in a month or two if they were allowed to continue taking the Vitamin. But you can find out yourself by taking Niacinamide -- the non-flushing form of the Vitamin 3/day for 3 to 4 months. The approximate time your body can store B-Vitamins in the liver. You should being burping regularly in this time and your C and D should slow down to once a day and your stool will SINK where it now flows (probably) a sign of completed digestion after your body's mucus membranes get better. As to your other problems like the cystic acne. It fit's the D's of Pellagra very well. Dermatitis, Dementia (anxiety, depression etc), Digestive Problems (C and D etc). And when Pellagra was first diagnosed in Italy the word itself mean's "Rough/Sour skin" and typically is how it is classically diagnosed today among those who are not alcoholic . . . but if you get Digestive issues first it confuses doctor's today. See this link on mdguidelines for diagnosing Pellagra today. http://www.mdguidelines.com/pellagra Where I quote " The diagnosis of pellagra is straightforward when the classic rash is present but may be elusive if there are only gastrointestinal and/or neurological manifestations." And this becomes a self fulfilling prophecy. GI problems can't be Pellagra because we didn't present today with the "keys" the doctor's were looking for to unlock the right illness. So they used the GI key to unlock the Celiac diagnosis instead. But 75+ years ago they knew that any 3 of the D's opened the same door -- Pellagra. Unfortunately today the (the D's of Pellagra) all open other disease's (door's) and rarely do they (doctor's) match up their keys' (the D's) to the Pellagra door (diagnosis) today. Dr. Heaney of Creighton University summarizes it well in his blog about Pellagra and the 4 D's. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ Quoting "In the United States, at least, pellagra is a disease of the past – fortunately – and it is doubtful today that most health professionals would recognize it if a case happened to come to their attention." I would say unfortunately is not being diagnosed enough just like Celiac disease wasn't being diagnosed 15 or 20 years ago Pellagra is still 15 or 20 years behind in the recognition it deserves today. Fortunately for us it can be easily diagnosed with a urine test if you can get your doctor to do it or by taking the Vitamin to prove cause and affect or as the mdguidelines say in their prognosis section Quoting "The prognosis for individuals with pellagra is excellent. Niacin(amide) supplements and a nutritionally balanced diet are effective treatments and result in a complete resolution of symptoms in most cases." Sorry so long but I had a lot of ground to cover. But I hope this is helpful. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
  17. I think a gluten free household could make a huge difference in your daughter's health, especially with other small children around. Your other children (and you and hubby) should be tested before going gluten free. My kid eats gluten. She just consumes it outside the house (usually at school).
  18. This is what you'll have to do if you go off gluten prior to blood testing or endoscopy. http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Even though you had the test years ago, celiac disease can present at any time so just b/c you were negative then doesn't mean you will be negative now. Besides that, we don't know what tests you had back then -- the full panel or not. Here is the full celiac serum panel: Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Total Serum IgA Also can be termed this way: Endomysial Antibody IgA Tissue Transglutaminase IgA GLIADIN IgG GLIADIN IgA Total Serum IgA Deamidated Gliadin Peptide (DGP) IgA and IgG
  19. Yesterday
  20. Gloves and a dust mask, would be my suggestion. I know our local store has a girl who is allergic to cilantro, and a few other herbs. She wears gloves while working the checkout.....Yes cilantro allergy where she breaks out in hives form touching it and working at a grocery store in Texas, not exactly a match made in heaven but she seems to have it under control.
  21. Yes, a blood test and then if positive an endoscopy (camera down throat) with biopsies taken of the intestine to confirm. You'd need to be eating gluten for it to work however and whether to go through the process is something only you can decide upon. There's an faq stickied above and I had my own go at collecting some links and generic answers here: Of course doing the permeability test wont affect testing so you can go ahead and do that. There's also nothing to stop you going gluten free and seeing if that helps, just dont do it if you plan on testing for celiac. Indeed eliminating that as a possibility should really come first as once you eliminate gluten it can be unpleasant to go back on it for testing purposes. Best of luck
  22. I glad you found the articles interesting. I was prescribed the usual antidepressants and sleep aids, from clonipine, zolpidem, alprazolam, citalopram to benzodiazepines and tricyclic antidepressants, as well as medications for my worsening diarrhea. I ran the gamut. Nothing helped. I felt I was getting worse and the doctors just kept writing prescriptions for stronger drugs. My digestive problems got so bad I developed nutritional deficiencies including pellagra. It turned out that I was allergic to Sulfa drugs. Many of the drugs I was prescribed contained sulfur compounds. But at the root of it all was undiagnosed Celiac disease. It was Celiac disease that made my intestines not able to produce those brain neurotransmitters. The antidepressants and antihistamines exacerbated that. There are many metabolic pathways that don't work correctly in people with celiac disease. The sulphur pathway is just one. Some of the pathways fail because absorption of vitamins and minerals is diminished or out of balance. You said you had taken a lot of magnesium. I wonder if you haven't gotten your system out of balance. Taking zinc may help balance the magnesium excess. Did you know that a poor sense of taste or smell often indicates a zinc deficiency? Anyway, I got myself off all the medications, eventually found a more capable doctor who helped put all the puzzle pieces together, and I'm doing so much better now gluten free and Sulfite free (nothing fermented or pickled). Yes, it has taken over a year to feel better, but it's been worthwhile if I can help others regain their own health, too.
  23. I think I had the blood test done for celiac several years ago. It was negative. Is celiac still tested through blood? Do you think I should be tested for it again before I do this gut permeability test? I read your link. Thanks for sharing. I feel that most main stream physicians don't test for a lot of things that naturopaths do. I was told I had IBS 20 years ago. What I am experiencing now is much different than my typical IBS symptoms. I need to get to the bottom of this. I feel awful most days with some days feeling ok. Sticky poops and some diarrhea but never normal. Lots of back pain associated with bm's. Which is also a fairly new symptom. Also severe itching just on my torso areas. But no real stomach pain. No bad cramping. I can't figure it out. I took an antibiotic for a bladder infection once and my symptoms improved for about 4 months. It was great. So then I thought I had sibo but my test didn't show enough bacteria. Any help or advice you can offer I'd appreciate.
  24. Can really identify with this as I had similarly nasty comments early on too, sad reality is people pick on anything that makes you different or what can be seen as a weakness. Those comments cut even deeper in the early stages when you feel awful and people are just rubbing it in, especially as this condition comes on through no fault of our own (which is what I find hard to take personally). All you can do is cut those people out your life as you don't need that extra aggravation on top of what's a restrictive and frankly horrible lifestyle change. You certainly find out who your friends are and conversely who needs kicking to the kerb asap. Karma gets some of the nasty ones back eventually I guess if you believe in that...
  25. I do worry when I pick up a bag of flour and it puffs all over. I use hand sanitizer a lot during my shift
  26. The gluten-free diet is required for celiac disease and gluten intolerance, but there are risks and dangers. Recent research reveals several issues you ... View the full article
  27. I'd not heard of this test until I read your post. I did google it and you may want to read this: http://labtestsonline.org.uk/understanding/analytes/unvalidated-tests/intestinal-permeability/ mainly to make sure that you don't forgo celiac testing if you've not already undergone it, which was the concern of the researchers in this study: http://www.ncbi.nlm.nih.gov/pubmed/9071934 Best of luck and do post what it tastes like and your results, I'm sure others will also be interested
  28. I doubt it. Maybe a bag of flour. Wash your hands well when you are done with your shift. I have seen some cashiers wearing food handler type gloves. You could take them off at the end before touching your food. would keep you from absent mindedly biting a finger nail or something.
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