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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Feeneyja

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  1. A lot of celiacs who don't feel well after adopting the gluten free diet test positive for SIBO (small intestine bacterial overgrowth). It can seem like you are having issues with all kinds of other foods. Namely, foods that are easily fermentable feed the bacteria in your small intestines that don't belong (they belong in your large intestines). Those with SIBO often have trouble with probiotics because you are adding bacteria to the wrong part of you digestive system. Your doctor can test for it by ordering a hydrogen breath test. Something to investigate as you try to regain your health. Here is a site with tons of resources: http://www.siboinfo.com/
  2. I read the actual Vatican statement. Nothing has changed from before. This is a clarification. The low gluten hosts are still OK. In the Catholic Church "matter" (the stuff used for the sacrifice) matters. Not a debate about why. So the hosts must be made from wheat, not contain sweeteners, be unleavened, and freshly made. There are reasons for all of this, which you can look up on legitimate Catholic websites. The low gluten hosts are supposed to be under 20ppm (although I think that some are under 100ppm). Unfortunately, some churches were using rice hosts or making their own. That was the problem.
  3. Thanks ccrew. I don't technically have celiac disease. I was very sick from my gluten challenge but did not test positive. I'm trying to decide if it's worth going to a cardiologist about this since lifestyle change is the first treatment. My GP said it could be vertigo and/or POTS. Not exactly a diagnosis. I'm supposed to just keep on keeping on and hopefully my nervous system will go back to normal. Jmg, I remember you mentioning it before. So its basically better? Did you do anything in particular about it? I was wondering if your experience at the eye doctor recently was related. My resting pulse is pretty low (52-62), so it doesn't take much to feel bad. I think I'm going to get a blood pressure cuff. I'm curious what my blood pressure is doing during this time.
  4. Thanks ccrew. I'm trying to figure this out. I think I had some POTS symptoms for a while, but nothing like during the gluten challenge and now it's like something new has emerged. I'm definitely better off of gluten, but I'm still seeing heart rate spikes that result in eyesight issues and dizziness. Water and salt seem to help quite a bit. I need to get back to exercising. Today I stood perfectly still for 10 minutes and watched my heart rate go from 62 up to 99 and at that point I started sweating and my vision started to cloud so I sat down. I tried it again later next to my husband. His heart rate went from 54 up to 70 and then back down to about 62 in 2 minutes. My heart rate was 95 and climbing. During my gluten challenge it went up to 130+. No wonder I felt terrible. It just seems like such an odd thing that the gluten challenge seemed to have triggered this. Maybe the stress? I just don't understand enough about POTS or what my reaction to gluten was to make sense of this.
  5. I'm wondering how many folks had POTS symptoms during their gluten consumption/challenge? My gluten challenge brought it on and now 3 weeks gluten free after the challenge and still dizzy I upped my salt and water intake and it has made a HUGE difference in the spike in my standing heart rate. Now, when I feel dizzy, I glance at my Fitbit and notice my heart rate is elevated, but not nearly as high as during the challenge. I think I have had POTS symptoms for a long time, fainting twice and nearly fainting many other times. Back then, I tended to attribute it to low blood pressure and blood sugar. But it was always times of prolonged standing, worse in the morning. It went away when we went gluten free several years ago, and I thought it was related to lower carb intake stabilizing my low blood sugar. I have read that POTS is more common in those with gluten intolerance . Anyone here who had symptoms develop while on gluten?
  6. No, I was not the one considering an iron infusion. My hemoglobin is 12.7. When I was still feeling tired and dizzy last week I decided to just take iron supplements and see. I did feel better each day. But iron can be dangerous (thank you cyclinglady for reminding me) and I just need to be patient. A lot was going on in my mouth during my gluten challenge, but I don't think any of it would show celiac on a biopsy (but wondering, is there any research on that?). It likely was just stress/inflammation. That definitely affects dental/mouth health. I'm tired of doing research and advocating for myself. I just want a doctor I can trust and time to feel better. My GP spent a lot of time with me and we had a good discussion. His point was that in his book, it doesn't matter if it's autoimmune or not. Clearly my immune system was reacting and compromising my health. And it takes time for the immune system to down regulate when it has been in hyperreactive mode. He also said he suspects they will find an autoimmune reaction in true NCGS (not Fodmap issues), but testing is just not there. I'm also happy that doing SOMETHING is producing a result. I really didn't think POTS could be possible for me because I didn't really notice a racing heart or anything. I was quite surprised when I reviewed my Fitbit data. There was one day in particular when I was feeling just awefully dizzy when I got up in the AM. I just wanted to be comfortable and tired of being sick and I remember consciously taking off my Fitbit and putting it aside because I just didn't want anything annoying on me. My heart rate was going from 60bpm up to 135 at that point. No wonder I felt bad. For people with POTS, you need to drink 2-2.5 liters of water a day. I hardly ever drink that much. So I started paying attention to water and it has really helped. Another tactic to help with the morning heart rate jump is to drink two large glasses of water before getting up. And wouldn't you know, no only has that helped with the heart rate fluctuations (I was jumping from 55 to about 110 recently and now it only goes to about 75 or 80) but it also has resolved the constipation!
  7. This is probably the last update on this topic since it's really post testing. I saw my GP. He doesn't test for ferritin, never giving iron for low ferritin because too much iron is not good. He stated quite firmly that I am NOT to consume gluten ever again, no matter what the tests showed. So good to hear that he's not sending me off for counseling and saying it's all in my head. I have still been a bit dizzy. He thinks it's one of two things (or both). Vertigo and/or POTS, both triggered by the neurological affects of immune response to gluten. He thinks in another two weeks things will be even better. Luckily I just had my yearly physical before the challenge, so he knew I had none of these symptoms before the challenge. I think POTS makes sense and I thought of it last week when I was puzzling over the lingering dizziness. When I looked over my Fitbit data, my heart rate really jumped during the gluten challenge when the dizziness set in. Specifically when waking. It went from 55bpm to 130bpm and stayed high until I laid back down every morning. There is a consistent 30-50bpm spike from low points throughout the challenge. Now, the spike isn't so high and doesn't last as long, but there is still about a 30bpm spike when I'm dizzy. When I squat down, heart rate drops, then spikes again when I stand. It happens in the morning, when I eat and when I'm really tired. Happily, increasing salt intake and water, as well as moving more seem to help. All the standard treatment for POTS. When I wake, if I just stand in one place I get dizzy, but moving around seems to help. Another improvement from the doctor visit was my blood pressure. My whole life I have been low (typically 90/54). Today it was 108/69. He also gave me some things to do to help with vertigo and will recommend physical therapy if the spinning and eye focus strain persist. I still wonder about ferritin levels since taking the iron supplement last week seemed to make me feel better and I have seen that low ferritin and mild anemia are common with POTS, but I'll just keep eating a lot of red meat and assume things will get better with time. I have also seen recent interesting articles saying POTS is more common with gluten intolerance than the general population and also some work pointing to a possible autoimmune cause. I'm wondering how many folks here have experienced POTS symptoms triggers by gluten? My symptoms were clearly triggered by the gluten challenge but are now persisting, but manageable.
  8. Dr. Fasano talks about the diet in his book. It was initially for those who were on the gluten-free diet and still had higher tTG or were still symptomatic, but I have seen it recommended now for the newly diagnosed.
  9. SIBO (small intestine bacterial overgrowth) needs to be ruled out. The following paper has a ton of great information. Basically, about 50% of folks with IBS actually have SIBO causing their symptoms. It is diagnosed with a breath test. Treatment with antibiotics (either standard or herbal) is necessary PLUS dietary adjustments. Of those treated for SIBO, about 50% relapse within 9 months, so often repeat courses of antibiotics are necessary. A reduction in fermentable carbs is usually necessary to keep SIBO at bay. My daughter has had SIBO that was treated and relapsed and I found that the low Fodmap diet wasn't really effective. The SIBO Specific Diet has worked well for us (http://www.siboinfo.com/uploads/5/4/8/4/5484269/sibo_specific_diet_food_guide_sept_2014.pdf). Once a month she takes an herbal antibiotic for about a week. This has also helped. FYI, the diagnosis, treatment, diet, and management are being done with the help of her doctor and nutritionist at U of C. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3610260/#!po=41.4286 More info about SIBO: http://www.siboinfo.com/ SIBO is a piece of the puzzle. Those with gluten intolerance (celiac or NCGS) are more likely to have SIBO. If it is SIBO, treatment makes a HUGE difference. Edited to add: Yes, the diet adjustments are difficult. And at first my daughter didn't want to do it so I didn't push it. But after feeling terrible for a year, she asked for it and the restriction of fermentable carbs did the trick. Since starting the herbal antibiotic rotation plus diet adjustment, she is now SIBO free for 3 months. We have been fighting this battle for two years. Another useful dietary tool is the Fast Tract Diet. It is basically the SIBO Specific Diet with a means for measuring your fermentable carbs. It helps quantify things and helps you make choices and pinpoint symptom agrivators. https://digestivehealthinstitute.org/fast-tract-diet/
  10. Non Celiac Gluten/Wheat Sensitivity also causes cell damage and immune response. It's just not autoimmune (as far as we know). This is research from 2016, so very recent and not all docs are up on it. But it can still be gluten (or other parts of wheat) even if you are not celiac positive. And I don't have a stat for it, but there are certainly people who react to gluten, test negative, but over time eventually test positive. The celiac test only rules out celiac NOW, not in the future. http://gut.bmj.com/content/early/2016/07/21/gutjnl-2016-311964 There are also other things that can cause inflammation: SIBO (small intestine bacterial overgrowth), IBS, IBD, parasites, candida, other food intolerances. Have these been ruled out? Have you attempted a gluten free diet and challenge and know it's wheat/gluten related?
  11. I know this is an old post, but your list of food intolerances just hit me, Ennis. Have you been checked for alpha gal allergy? It results from a tick bite (lone star tick) and causes a delayed (like, several hours later) IgE reaction to mammalian meats and milk. It is a reaction to the sugar alpha gal found in mammals. The sugar binds to a fat during digestion and then that results in the immune response. So some folks with alpha gal allergy can tolerate lean mammalian meats. It just made me wonder since I know you can't have dairy either. I just ran into an article about it since it's tick season.
  12. I hear you cyclinglady. I'll hold off until I see the doctor next week.
  13. Two and a half weeks gluten free now post challenge. I was still dizzy and fatigued so I started taking an OTC iron supplement (65mg) and after about 3 days felt better than I have in over a month. The dizziness was mostly gone and I had way more energy. I wanted my GP to test my ferritin but he only did a CBC. My hemoglobin was 12.7, so not anemia (but potentially iron deficient?). I also had asked my GP to run a comprehensive celiac panel. It was a week post going gluten-free again. But recent research shows that antibodies can continue to rise up to 6 weeks after going gluten-free. The current algorithm for testing those on a gluten-free diet includes retesting antibodies up to 6 weeks later if celiac is suspected but negative blood work (see attachment). But it wasn't the full panel. Just TTG, EMA, and total IGA. Negative. Im seeing my GP next week for a follow up. And I'm bracing for the it's in your head conversation. I realize that at this point, with only a 4 week challenge, 3 years mostly gluten-free prior to that, and now 2 and a half weeks return to gluten-free, that there is nothing more to do other than remain gluten-free. But there is this part of me that really wishes I knew one way or another for sure. (I know, I'm whining now). My sisters don't believe me. One has Type 1 diabetes and when I told her that celiac screening is recommended, she told me it is overkill. She has her Ph.d. In molecular biology and immunology, so in her mind, she knows better. But she also told me that "classic immunology " says that it won't take 12 weeks to mount a detectable immune response. My other sister told me that it's just stress and she sometimes gets those same symptoms (diarrhea, bloating, mucus, fatigue, joint pain), and it's just stress for her too. But while visiting her in Wednesday, I drank a cup of coffee. I'm not saying the coffee contained gluten. But the kitchen is used for bread making. That night I was nauseated with gurgling gut, Thursday very bloated, today I woke up with a headache and feeling nauseated, still gurgling gut. This was the exact same pattern I noticed before the gluten challenge. It would take about 2-3 days to really feel bad, getting worse every day. Which is why I wonder if it's more than NCGS, but will never know. OK. Done with self pitying rant.
  14. This is completely anecdotal, but I ran into the story of a woman whose daughter didn't have a firm diagnosis and then, like your child, appeared to become asymptomatic. At that point they met with the doctor and started the testing process. She ate as much gluten as she wanted until she had symptoms. It took 4 months. she suddenly presented with diarrhea and vomiting. They did the endoscopy and biopsy and she was Marsh 3. Coming from experience for my daughter and myself, the gluten challenge is very difficult if there are symptoms. And many don't last long enough for accurate testing. If your child is currently asymptomatic, now might be a good time to begin a challenge. But I completely understand your concern. No one wants to subject their child to illness for the sake of testing. There is always the hope that more accurate testing that doesn't require a prolonged gluten challenge may arrive over the next few years. I know it's being worked on.
  15. Oh, and as to your other question, you have this reaction because you have a gluten problem. My other kids and husband can be gluten free with us for months and eat gluten at someone else's home with no problem. Not me or my daughter who also is gluten intolerant. Is it autoimmune in nature (celiac disease) or is it a sensitivity (which is also immune in nature, but not your immune system attacking your own tissue)? There is no way to know that one for sure unless you go through testing. And even then a negative test may mean you don't have celiac disease YET. It is suspicious that you have an uncle with celiac disease.