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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 Celiac.com's FREE weekly eNewsletter   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

Feeneyja

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  1. 19 is not young for this. One can be diagnosed at any age. How about this stat: before anyone understood what actually caused celiac disease, most folks diagnosed with it died. The complications when consuming gluten affect every system of the body. Lack of symptoms doesn’t mean there isn’t damage. The cancer risk is real. The neuropathy risk is real. At 19, you have a lot ahead of you that you would be willingly tossing aside. It is a real, serious disease where the treatment is only food...not drugs with side affects, not chemo, not stents or insulin.
  2. SIBO

    My daughter was SIBO positive two years ago. Flagyl was first prescribed but she had a bad reaction to it so then the Xfaxin was approved. So you may want to try Flagyl first. Also, we were not given any dietary advice or what to do to keep the SIBO gone, so she had a recurrence early this year. Insurance wouldn’t approve going back to the same pediatric GI doc, so we switched insurance. It took a couple of months so I used the info here to treat her: http://www.siboinfo.com/ I can tell you that with a combination of herbal antibiotics, a diet low in fermentable carbs, and a supplement designed specifically with Methane SIBO in mind (Atrantil), plus a supplement to increase gut motility (Iberogast) we took care of it. We have been increasing the fermentable carbs and adding probiotics with great success. It’s the best she has looked and felt in years. When we finally made it back to the GI doc she commended our work. She did state that for some folks SIBO is a bit chronic, so be sure to act with additional herbal antibiotics if it looks like it is returning. To keep my daughter SIBO free, we have basically gone Paleo and made sure she takes a supplement to improve motility. Grains and lots of processed sugars are clearly bad for her gut. She also is dairy intolerant. There are lots of ways to treat SIBO. Standard antibiotics, herbal antibiotics, diet only, elemental diet, probiotics only. It depends a great deal on how bad it is and what you tolerate. And yes, SIBO causes intestinal permeability. So it can cause inflammation, gut damage, vitamin deficiencies, and additional food intolerances. You don’t want to ignore it as one of your docs suggested. Celiac researcher Dr. Fasano has suggested that it is a key player in the development of autoimmunity. Also know that when you treat it (no matter which treatment), you will experience what is called a die off reaction. It is the result of the toxins from the dying microorganisms. Google it...but within the first days you will temporarily feel worse. But it typically only last a few days. Finally, SIBO is more of a symptom than a diagnosis. There is a reason your body has allowed these microorganisms to overgrow. Getting to that answer is tricky. For folks with gluten intolerance, sibo is common. The thought is that celiac and NCGS can affect the autonomic nervous system which is what controls the peristaltic waves that push bacteria to the large intestines. This allows overgrowth. Check out the above link and talk with your doctor. You can definitely do this. Best of luck to you.
  3. There is nothing in this that looks at extra intestinal symptoms. And frankly, when I’m glutened, I suffer the consequences for weeks. AND I’m more sensitive to lots of foods. AND I did my gluten challenge with vital wheat gluten because I knew the GI doc was going to try to pin it on the FODMAPS. What about folks like us?? Since there is no test to actually confirm NCGS and tease out other intolerances or conditions that are alleviated with the removal of grains, these studies are useless. But the media (and my daughter’s GI doc) love to toss the blame there without looking further. Then there’s the fact that any food intolerance contributes to gut dysbiosis, which in turn is a trigger for intestinal permeability and immune system response. Even those with NCGS have a higher prevalence of autoimmune diseases (can’t remember the exact study).
  4. This is actually an interesting and complex topic. It it depends a bit on your diagnosis. If you have celiac disease or NCGS, your body recognizes it for what it is and has the immune system response based on your diagnosis. But also, when exposed to gluten, your body produces zonulin, the protein that regulates the tight junctions, allowing gluten and other proteins into your body resulting in an immune response to those foreign proteins. How exaggerated the response depends on genetics. It appears as if there are two ways that gluten can enter your body. Directly through the cells by a transferrin receptor and also through the zonulin/tight junction pathway. For those with celiac disease, the villi are destroyed and you cannot break down the milk proteins. But another likely cause of the intolerance stems from the intestinal permeability caused by gluten. Your body reacts to milk proteins because they are entering your body not fully digested and eliciting an immune response. Gut permeability is the culprit behind the multiple food intolerances commonly seen with autoimmune/inflammatory diseases. Another factor in all of this is gut dysbiosis. Bacteria or yeast overgrowth is a suspected trigger for the immune response. It’s one of the environmental components of the disease process and contributes to intestinal permeability. When you take care of the yeast overgrowth, it will reduce the intestinal permeability, probably allow you to consume dairy again, but if gluten is the issue, there is no stopping the response to the gluten since the protein itself triggers intestinal permeability and once the immune system is programmed to respond to the protein, there isn’t a turning it off. An interesting development is the discovery of molecules that block zonulin. The result is that gluten does not open the tight junctions and there is no immune response. So, since those with gluten intolerance always produce zonulin, you will always have this reaction. But someday there may be a drug on the market that could prevent it. Whether one would choose to take it or not is another issue. This is an interesting talk by celiac disease researcher Dr. Fasano on the topic: https://cellsciencesystems.com/education/webinars/zonulin-intestinal-permeability-and-immune-mediated-disorders-facts-and-fantasies/
  5. It’s amazing the bad habits we realize we have after needing to avoid gluten in highly contaminated places. I have been glutened at Panera even when I didn’t eat anything. But I have a bad habit of putting my hands by my mouth/lips when I’m thinking. I never noticed it before now. I meet at Panera with a book group. When I bring my own wipes and clean the table and chair thoroughly, I am fine. When I forgot my wipes last meeting, I got glutened. I have bought coffee at gas stations with no problems. But those times there was no fresh food offered at the gas station and I chose a cup and lid buried in the stack so as to avoid others handling it. If the gas station has fresh gluten food (particularly by the coffee), I avoid it. I have started to bring boxed cold brewed coffee to avoid that scenario. Like cycling lady said, wash your hands before ever putting anything in your mouth. Even if it’s something you brought to eat yourself. Edited to add: I’m also NCGS, as is my daughter: both of us gluten free first, gluten challenge, negative results.
  6. I did a 4 week gluten challenge back in May and would not recommend it to anyone. It was hell. I was negative anyway. It took me months to feel better. My daughter also has gluten intolerance (also gluten challenge and negative afterwards). It affects her GI and nervous system. Some scary symptoms. But she also tested positive for SIBO. You can either be methane or hydrogen positive for SIBO. Methane is often more difficult to treat. Her gluten and SIBO symptoms are different. And it took quite some time to get on top of the SIBO. She is currently SIBO free, but joint pain and joint rashes have brought us to the point that I'm taking her to Mayo Clinic in December. 10 minutes with a doctor is not long enough to figure anything out. I hear your frustration. You might want to check out http://www.siboinfo.com/ . It has everything you need to know about SIBO. I am pretty sure you can also have villious atrophy with SIBO. I don't know about an increase in IELs. But also know that gluten intolerance is associated with SIBO. Many folks with celiac that is not responding to the gluten free diet turn out to have SIBO.
  7. I just want to chime in with another negative blood and biopsy experience but clearly gluten hurts my body. It has taken me months to feel better after my gluten challenge. I was just glutened for Halloween (either one of my kids got me or my in-laws crumb laden home where we spent the evening). Both me and one of my daughters are gluten intolerant and both of us have been sick from Halloween (neither of us ate anything). Both of us had negative biopsy and blood work. It affects us slightly differently. Both have stomach issues (bloat, gas, pain, gurgling, change in BM), both of us have fatigue and headache, but she has nerve and joint pain, I have nausea, dizziness, hair loss, and terrible mouth and nose sores. So clearly NCGS is a real thing and not as benign as some doctors would suggest. I just think they don't have enough research results on it to properly quantify and qualify the damage being done. I haven't bothered with the genetic testing because it doesn't change anything for me. Even if I'm HLA DQ 2/8 negative, I still can't eat gluten. The physical results are clear and what I'm going by. Good luck with your healing post gluten challenge. It can be a long road. Sometimes you need to give up other foods to assist in the healing process. I ended up following the Paleo AIP diet to finally start to feel better. I expect to be able to reintroduce some of the restricted foods once I'm further along in the healing process. Be kind to yourself, take it easy.
  8. The number of folks walking around who don't know they have celiac is going down (from 80% to about 50%). That is due to testing and awareness. The overall rate within the population is independent of rate of diagnosis. The population rate says that in any random sampling, you will find x number with the disease. So something is increasing the rate in the population. Remember, 40% of the population has the genetics for celiac disease, but only a certain percentage of those develop the disease. What are those triggers?
  9. The prevelance rates have always been based on random screenings of the population. Pick 1000 people, and 1% will wave celiac disease. Of those with celiac, 50-80% won't know they have it. This presentation points to a huge increase in population based data. I believe a recent study in Italy pointed to the same thing. The rate of celiac disease is increasing in the population.
  10. Inflammation is the critical point, I think. I keep wondering if inflammation is stopped early enough in the disease process (pick any disease, really), if there can be complete recovery without drugs. In many ways, celiac disease is a great example of this. We know what causes the immune response and subsequent inflammation and look what happens when you remove it! I also think of Dr. Wahls and her improvement in MS from a lifestyle the lowers inflammation and promotes cellular healing. My daughter is not positive for celiac, but she is clearly gluten intolerant. Her symptoms, while there are some GI, are mostly neurological. Nerve pain, heaviness of limbs, tingling of extremities, balance problems, double vision. We recently also removed dairy, eggs, and nightshades and the rash she has had is going away and the joint pain and stiffness she experienced is now gone. So is the lingering fatigue. It makes me wonder if she is early MS, but no tests to back it up. She is perfectly healthy at physicals and the neurologist I consulted didn't believe that food could cause her issues (he also questioned that there WERE any issues since she was asymptomatic by then.) so I think about all of us with NCGS. Is it an inflammation problem that sets the stage for future autoimmune conditions?
  11. Lots of folks with gluten intolerance (celiac or NCGS) also have a big problem with milk. Sometimes the symptoms are just as bad as with gluten. You might want to consider removing dairy until you heal.
  12. Right. Look up the drug. It's an immunosuppressant (the article doesn't say that, FDA info does). The risk for immonosuppressants is greater likelyhood of an infection your body can't fight. Of course, the interesting thing is that no one mentions the role of diet in inflammation. Drug money rules.
  13. Aldis

    I know you can find the number for Aldi's online. I have called them with questions about a product not specifically labeled gluten free. Based on a number found on the packaging info, they were able to put me into touch with the exact company that produced that product for them. I was able to ask about potential gluten cross contamination. Very helpful. But a pain to do all of the time.
  14. One of my daughters is milk intolerant. She had a history of mucus and phlegm and I didn't connect it right away. One day while drinking kefir she got a weird sensation in her throat and almost threw up. That happened twice. We cut milk and it has never happened again. The mucus is gone as well as an eye twitch/tick she developed. So, it may be the casein in milk.
  15. This paper from 2015 suggests the opposite is true: High Proportions of People With Nonceliac Wheat Sensitivity Have Autoimmune Disease or Antinuclear Antibodies. https://www.ncbi.nlm.nih.gov/m/pubmed/26026392/ Of course correlation does not equal causation, but it is compelling and something worth watching.