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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.


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About steve-o

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  1. Hang in there Dave, it'll get better. I've been gluten-free for almost 2 months now, and I went through all the same stuff you're describing. I went through a "gluten withdrawal" period of about a month, where I felt really rotten...but then it got much better, and has been ever since. If you're still having issues with nausea, you might try cutting out dairy from your diet too. Nausea is a common symptom of lactose intolerance, which is highly associated with celiac disease. I found that cutting out dairy made my nausea go away...but we're all different, so this may or may not work for you. Also, make sure you're taking a good multivitamin.
  2. I've read that several people here have benefited by taking a digestive enzyme, so I recently decided to give them a try. I took the Vitacost brand - NSI Vegetarian Digestive Enzymes. I took one capsule as I started eating dinner. Shortly after dinner, I started getting some serious reflux and heartburn (I hadn't had reflux problems since going gluten-free). I even had a couple of Verp's...never fun! (for those who haven't had the pleasure of experiencing a Verp...this is a combination of vomit and a burp. You burp and get a tiny bit of vomit in your mouth) I though maybe it just took some getting used to, so I took another enzyme pill the next night at dinner...and had the same results. So I decided to stop taking the enzyme. This was about 4 days ago. Since then, for the past 4 days, I've had ongoing heartburn and reflux, along with a feeling of being full all the time. I feel very bloated, and it's tough to eat because I feel like I'm already full before I even start to eat. When I do eat, the reflux gets worse, and I usually have a verp or two. So I'm just wondering if anybody else has experienced this, or if you all might have some idea why I'm getting this reaction? Seems like enzymes help these symptoms in other people...so why are they giving me these symptoms? The enzyme I used is free of gluten, yeast, soy. Here are the ingredients: Protease 82,000 HUT Amylase 8,000 SKB Lipase 90 FIP Cellulase 600 CU Malt Diastase 215 DP Invertase 525 Sumner Lactase 1,000 ALU Pectinase 55 ENDO-PG Alpha Galactosidase 300 GAL
  3. I'm sure this sounds like a lame, overly simple answer... but are you getting enough exercise? I used to have a major problem with brain fog, and the one thing that made the biggest difference for me, was getting daily exercise. You don't have to run a marathon, just taking a 30 minute walk each day will help. When you feel horrible all the time, it's really hard to start an exercise program...but if you just push yourself to get started, you'll be glad you did, and will soon feel much better. Also, getting exercise will help you to sleep better.
  4. I was sooooo mad when I got the pathology report from my biopsy, and I saw that the doctor only took one tissue sample. Big surprise....I was "negative" for celiac sprue. You don't need to be a rocket scientist to understand sampling error. I asked the doc why he only took one sample, and he basically threw down the "I'm the doctor, don't question me" card. To add insult to injury, I wound up having to pay almost $500 out of pocket for my endoscopy, because of my insurance deductible. Anyhow, sorry for the rant.... I've read some articles that say the Jejunum is the part of the small intestine which is most often damaged...yet doctors always take tissue samples from the duodenum (mainly because a jejunal biopsy is more difficult to obtain).
  5. My servings actually are pretty big...but obviously not big enough, so I'll be adding some more calories to my meals & snacks, as suggested. I have huge servings of rice and potatoes, because I haven't found a gluten-free bread I like, so these are the only carbs I get. But I'll definately have to check out those Kinnikinnick bagles. Even if I don't find a gluten-free bread I particularly like, I guess I'm going to have to just eat it for the calories, regardless of the taste. I had my thyroid checked by the doc a couple months back, and all was normal. Merika, can you tell me what brand of digestive enzyme you use? I'm definately interested in giving them a try. I have a hard time eating as many calories as I probably need to gain weight, because I get full quickly, and am not hungry enough to eat 5 or 6 meals a day. So hopefully enzymes will help me to digest food quicker, so I can eat more meals per day. I've also just started a weight lifting program, which as you said, has already started increasing my appetite. These are all great suggestions which I'll be sure to try...thanks everyone for your responses.
  6. Thanks everyone, for all the advice. I'll definitely be trying some of your suggestions in the coming weeks. As far as how I eat, most days are like this: Breakfast: Gluten free corn flakes with silk soy milk, banana, orange juice snack: planters mixed nuts lunch: Slices of Boars Head turkey lunch meat, bowl of rice or potatoes, gluten-free cookies snack: some fruit, and/or potato chips dinner: always includes a serving of some meat (chicken, beef, pork), a carb (rice, potatoes, or rice pasta), and a salad or vegetable. I also drink a ton of water throughout the day, so I'm well hydrated. So it seems (as far as I can tell) that I eat a pretty decent diet, but I guess I just need to eat more. I think I have a malabsoption issue, particularly with fat, because if I eat high fat meals, my stools become more frequent and show signs of steatorrhea. I also have to be very careful to avoid dairy, or I get nausea. I must have a super sensitive lactose intolerance, because even butter makes me ill. So I've been using gluten-free, dairy free margarine. Thanks again for all your kind advice, Steve
  7. I'm in the same boat you're in....high Anti-Gliadin, but all other tests negative. I've been looking high and low for a concrete answer, but still don't have one. Everything I've read or heard, says that anti-gliadin alone doesn't indicate celiac disease. Some sources say it means you "might" have a gluten intolerance, but it may also mean nothing. Something like 25% of the general population has elevated anti-gliadin antibodies, so doctors generally don't believe it indicates anything. Of course, this begs the question; why bother doing this test? I've yet to hear an answer for this either. Anyhow, in the end, your best bet is to just listen to your body. Try going on a strict gluten free diet for a few months, and see if you feel better, or if your symptoms disappear. This should give you a good indication of whether or not your body is reacting to gluten. Good luck, Steve
  8. I've read that some celiacs with malabsorption issues have been able to absorb nutrients better, and alleviate some of their uncomfortable gastro symptoms, by supplementing with digestive enzymes. I've only been gluten-free for a month, and am still experiencing some symptoms, so I was hoping this might be helpful during my "recovery" period. Does anybody have any experience taking enzymes? I'm curious to see if this has helped anybody...and if so, can you recommend a good brand? Thanks!
  9. Liliane, I've been considering enterolab, and have the same concerns you do about the validity of their tests. My blood test was somewhat inconclusive, and my biopsy was negative (but they only took 1 tissue sample), so I'm hoping enterolab can give me a definitive answer as to what’s ailing me. I'm really underweight, so I'm primarily interested in their test for intestinal malabsorption. I did some googling, and found this abstract about one of Dr Fine's research studies. It basically says that his malabsorption test is just as accurate as the dreaded "72 hour stool collection" test: http://www.ncbi.nlm.nih.gov/entrez/query.f...1454&query_hl=1 Also, if you read Dr Fine's curriculum vitae...at the bottom, it lists all the journals he's been published in. You can search the web for more specifics on what these studies found: http://www.enterolab.com/CV/ Another concern I had, was whether or not everybody comes back with some type of positive test....otherwise saying, is he just telling people the result they're expecting to hear? But there have actually been several posts in this forum asking that very question, and it turns out that lots of people have results that are negative. So it seems like enterolab is a legitimate operation. Hope this helps, Steve
  10. I had some major withdrawal problems too. It put whole new meaning to the phrase "carbohydrate addict". For me, the withdrawal lasted about 3 to 4 weeks. I was also really tired all the time, but I found that I felt much better after I started to take a good multivitamin. Getting some exercise also helped quite a bit...it's hard to get started with exercise when you feel so lousy, but you'll feel much better for it. Also, make sure you're eating enough. It's easy to take in too few calories on a gluten-free diet. Good luck!
  11. Hi all, I weighed myself this morning, and almost died when I saw that I weigh 127 pounds (I'm 6 foot tall). Before going gluten free about a month ago, I weighed in at a brawny 140 pounds. If I loose any more weight, I'll probably disappear. I imagine the problem is that I'm not getting enough calories on the gluten-free diet. It's been tough, because I'm also avoiding dairy (I have a nasty lactose intolerance), and it seems like anything that’s fatty or greasy, give me nausea. Does anybody know of any good gluten & dairy free weight gain supplements? I've read that some people here use ensure or boost. I haven't tried ensure yet, but I have a hard time tolerating boost...I think it has milk proteins in it, even though it's technically lactose free? Thanks for any suggestions you might have.
  12. This was on the www.msnbc.com website today... http://www.msnbc.msn.com/id/7897334 A must read for parents of an infant / newborn
  13. I'll have to jump on this bandwagon too... Tinkyada is all you'll ever need...don't even bother with other pastas! It's that good. I tried Mrs Leapers and had the same result you did...it turned into a mushy mess.
  14. I had a big problem with reflux, but since going gluten free, it has totally disappeared. Officially, I don't have celiac disease (negative biopsy & bloodwork only showed elevated IgA Anti-Gliadin), so I've "challenged" myself a couple times, just to see what happens. As soon as I re-introduce gluten into my diet, the reflux comes back.
  15. Hi everyone, I was sick today, with all the same symptoms I get when I eat gluten...so I've been racking my brain, trying to figure out what is it that I've eaten in the past day or so, that could have made me sick. High on my list of suspect foods is "I can't believe it's not butter" spread. I had a pretty generous portion on my baked potato last night. I looked on their webpage, and there was no gluten info. So I emailed them, and asked if they could tell me if any of their products are gluten free. Here's the answer I got: -------------------------------------------------------------------------------------------------- Hi Steve, Thanks for writing! Because our products are formulated for use by the majority of our consumers, and not specifically for those on restricted diets, it is possible our product formulations may change at any time. As a result, we cannot provide a list due to several factors: - Lists of this type reflect products as formulated at a specific time - Possible that more products/varieties may have been added - More important, changes in existing products may have occurred Therefore, we suggest reading all ingredient labels carefully. We hope this information is helpful! Your friends at ICBINB! -------------------------------------------------------------------------------------------------- The only other thing I've ever used ICBINB on, is some gluten free bread that I've made...which always seems to make me ill. This led me to believe I might have a problem with the yeast, but now I'm wondering if it was the ICBINB? So I'm just curious to see how many of you have had positive, or negative, experiences with this product. Thanks in advance for your input, Steve