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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?  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


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About naturegirl

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  1. Good to know, thanks. I'm already off all oats but I do eat organic gluten-free bread, rice, quinoa and must admit, I have a sweet tooth (I love dark chocolate and sometimes indulge in gluten-free cake!). I would say that my diet is mostly organic wholefoods but by no means 100% and I consume grains, including organic corn and small amounts of soy (e.g. in chocolate or tamari). I also have not tried going off nightshades (as I've seen mentioned here by many). The reason that I haven't yet got stricter with my diet is that there are days (sometimes even a week or so) when I am not having these episodes, whilst consuming organic almond milk, brown rice... But perhaps I am experiencing a delayed reaction? Also, I did try an elimination diet, eating only fish and vegetables for around a week, but I couldn't get my system to 'settle' before introducing other foods. Things didn't get worse when I introduced grains (quinoa and rice). What is the idea behind eliminating all grains? Is it helpful for many celiacs? No, I'd happily save the money... I mostly just wanted to know what my recent test results really meant. Thanks!
  2. Thanks for sharing... I looked over symptoms for the different forms of thyroidism and it doesn't seem to really align with my symptoms but I will perhaps see whether the doctor recommends getting an thyroid ultrasound done (as I have had the strange sensations in that area). I'm also waiting for a 'hormone test (saliva samples over 30 days)' so perhaps that is more sensitive than the blood-work. Thanks again.
  3. Thanks a lot for sharing. How was your hyperthyroidism diagnosed? I did have a couple of thyroid function measurements done in this recent blood test. My TSH was 1.73 mU/L (normal range: 0.3-4.5) and 'free' T4 was 1.00 ng/dL (normal range: 0.7-1.8). I have recently had a subtle but noticeable sensation in my neck around where I think the thyroid is... Haven't really given it too much attention though. This doctor (that I'm going to see again in a few days) mentioned that he suspected that some kind of thyroid issue may be occurring even though the last blood results were in the normal range (can't remember if he said hypo or hyper though). However, I don't think that I'm displaying that many of the symptoms for either. He suggested that I could take a natural thyroid supplement (pig hormones?) without further testing but that it could make things worse if it is not correct. But that we would know pretty quickly if that was the case... I'll ask him about the connection with the cholesterol for sure! Thanks again.
  4. Makes sense! And you would recommend doing a repeat of that test to determine whether gluten contamination could be the source of my symptoms? Thanks.
  5. I'd be interested to hear of anyone else experiencing low cholesterol and/or cortisol and any accompanying symptoms. Does this often occur in celiacs (seen several other posts about this)? Even when they are on a gluten-free diet? I first had low cholesterol and cortisol flagged one year ago. I just received new bloodwork (see signature for numbers) showing that my cholesterol and cortisol have continued to drop over the past year. Seems surprising as I've continued to eat lots of eggs, started eating butter (doctors orders!!!) and goat/sheep cheese. I don't eat meat, however, just fish and sea-food. I may need to start eating meat (been 'pescetarian' since childhood). I've also been taking Isocort (supplement to help raise cortisol levels). Thank you.
  6. Thanks a lot Skylark. That is good to know and is sort of what I was 'guessing'. I found your other longer post about this, which was really interesting and informative. I have done some scientific research, so I know that peer-reviewed publications are a good indicator that the data is solid! And the lack thereof is of concern (especially considering the price of testing!!!). My main issue is that despite being gluten-free for over 3 years, I am still experiencing auto-immune type symptoms. If I have to get even stricter about gluten to resolve the issues, I will gladly do so to get better (stop eating out...) but I just want to make sure that I'm not focussing my attention in the wrong place. The recent lab results came from meta-metrix and my doctor was indicating that these were 'not sensitive enough', unlike Enterolab, so if these came back positive, it really meant that I'm still getting contaminated with gluten. I did not get a fecal TTG result in either test (as far as I know - all Enterolab results included in initial post above). I have also done blood tests in Europe that give 'specific IgG' results. These have always come back negative for gluten, casein... The Enterolab website is down right now but perhaps I will look into a fecal TTG test. Is Enterolab the best one to do this? Thanks again.
  7. Thanks a lot Skylark! Much appreciated! Do you mean attach the actual lab results?
  8. Hi there... I posted in detail about this here but it was probably way too long! Has anyone experienced getting a lower anti-gliadin IgA (from stool testing) after being gluten-free? If so, did you also have some symptom relief? Thanks for your help!
  9. Thank you for the kind words, Newbee! Yes, I have been to a lot of doctors (both in Europe and here in Colorado)... alternative and allopathic... but so far no answers as to what is really going on. I think that it is tricky doing some appointments over there and others here... I don't have American medical insurance, so I try to get most testing done in Europe, when I'm back (around 2x/year). I feel that because I look healthy (not complaining about that - I feel lucky!) I sense that they don't fully believe the severity of how much these symptoms are impacting my life. I always feel as though I'm being mildly 'judged' as being a hyperchondriac (sometimes by friends/family too). I believe that those who do judge in this way, don't fully understand that I wouldn't be looking so hard for answers and solutions if I wasn't experiencing these debilitating symptoms so often. There are so many other things that I'd rather spend my time/energy on! With doctors, my experience is when they cannot find answers, they try to just 'play things down'... I've just started seeing a new doctor here in Colorado who is extremely expensive but I'm hoping we might get somewhere together. So far, he is treating me with herbs (and some pharmaceuticals) for H. Pylori and Candida. He also thinks that I'm still getting contaminated with gluten (my other post). Fingers crossed, we'll get some answers... I have done quite a few blood tests and vitamin levels look good. I did get B12 shots around 7 years ago, after I'd had amoebic dysentry while travelling in India... and they helped me a lot. I was feeling a bit low (but before all this weird 'collection' of symptoms started) and with the shots my energy and mood improved greatly. I've also done some Myers cocktails via IV these past few months, including B vitamins... but have not noticed any differences in symptoms (actually a little worse if anything). I also just did a 'female hormonal panel' (saliva samples over a whole month!) - so I'm waiting for those results. I did a blood test again and included test for lupus (as that has crossed my mind from stuff I've read). Which symptoms are 'neurological', Newbee? Thanks again!
  10. Thanks so much for the responses... it is really helpful to just talk these things through with others that have had / are having similar challenges. I would not say that constipation is a major issue for me. It happens once in a while but is pretty low on the list of 'concerning symptoms'. I posted here (my previous post) about my other symptoms... I did have D for around 8 months (10x/day) when I first moved to America from Europe, 5 years ago. That is when I went gluten-low again (took me a year to go to strict gluten-free). Then, as I was not experiencing the D when in Europe (and diet was so similar), I suspected something in Colorado water and switched to mineral water. I also did acupuncture and Chinese herbs. The D went away. So, I'm still not clear what made it resolve but I feel very lucky that it did! As far as this sense of my digestion being 'slowed down'... it is more as though my food just seems to kind of 'sit there' before I digest it... I feel as though my belly area is often swollen and I get nausea very frequently, particularly at night-time. I usually feel better once I go to the toilet. Good idea to keep eating lots of fresh fruit and veggies... they always make me feel good and I'm a pescetarian so both are 'staples' already. And I do drink lots of water too (have to in Colorado - as so very dry). Apart from the colonoscopy, the other reason I thought that maybe my system was 'slower' than most... is that I did a 3-day Wilderness Solo a few years back, during which I fasted (apart from the weakness from not eating - I've never felt better!). When I talked to all my other classmates, none of them had needed to go to the toilet during the 3 days, and I had been each day! Just thought that it was kind of weird (having said that, we were supposed to go in strange little bags to lessen the environmental impact, and maybe they didn't want to admit that they hadn't!!!). Yes, due to get another colonoscopy 5 years after first (when gastroenterologist first saw I had 30 polyps, he said I'd need one every 6 months - but after good results from biopsy he changed it to 5 years). Anyway, if anyone else has had multiple polyps, that was the main reason I was posting here... to see if there is a connection... Thanks again.
  11. Hello, I'm still trying to figure out whether all my unexplained health issues are indeed related to gluten. Unfortunately, my symptoms seem to be getting progressively worse despite the fact that I have been strictly gluten-free for 3 years. I must admit that I'm feeling a bit despairing that I will ever get better today... But thought it would be better to act by reaching out here, then just 'give up'. Most of my symptoms come and go and are sometimes much worse than other times - which I suppose is why I still believe it must be something that I am doing or eating that is causing them. Periodically, I get the following symptoms, all at the same time, in what I consider to be 'episodes'. The onset is sudden: Swollen abdomen Nausea Swollen glands (in neck - near tonsils) Swollen lymph glands (groin, armpits, neck, knees...) - I think Aching joints (hips, knees, elbows, small joints in fingers, toes...) Headache (tight band around top of head) Lack of appetite Extreme fatigue Brain fog Sense of despair/ cry easily - that feels more physical than just a response to other symptoms Painful urination (as though urine itself is irritating) Sore throat Slightly hoarse voice Itchy acne like rash on forehead - like lots of tiny pimples beneath the skin (nowhere else - usually appears after other symptoms have subsided) Weakness Muscle aches Dry/gritty eyes Photosensitivity Hypersensitive to smells General malaise / feel like I'm getting the flu Chills and feel hot at same time (prefer to be warm though) Only option seems to be to 'sleep it off' I first got this collection of symptoms and it lasted around 3 days in June 2009 (just after having Mirena IUD inserted). When I do not have them, I feel mostly like a healthy 33 year-old... but unfortunately they come frequently and are getting in the way of all aspects of my life (work, relationship, travel...). The other symptoms/issues that I have are frequently getting very painful UTI's (this has vastly improved since I recently started doing bladder instillations - life-changing!) and gynecological issues (pain, inflammation, irritation, fissures...). I've had these issues since being a child. Just these last couple of weeks, I've had a couple of newer symptoms add themselves to the list: Very bad night-time nausea and stomach cramps, to the point of waking me up as well as just feeling lousy in the morning. I also feel this strange 'buzzing' in my head (not a sound - more a sensation) when I wake in the night, and feel as though I might faint when I stand. I feel a bit feverish too... My throat pain has been more intense and lasted longer. I have a feeling like there's a lump in my throat (thyroid area?). The aching joints have also been worse these past couple of weeks (this usually is less severe and doesn't last as long) - and I felt as though my left hip (never been painful before) and right shoulder were kind of 'frozen' yesterday morning. I felt as though my arm and leg had pins and needles too and were tingly/numb. This stopped after about an hour of moving around gently. Had to sleep most of yesterday. It is just difficult as I feel that the issues keep 'moving around' my body and new ones are appearing all the time. The main thing that improved when I went gluten-free is the 'baseline' state of my digestive system. I used to always be bloated, have cramps, gurgling, flatulence... and when I'm not having one of these 'episodes' my stomach is really quite good! And even when I do have one of these 'episodes' it is never quite what it used to be... it feels more like a systemic inflammation, rather than a GI issue directly. The one thing that is always there and sometimes worries me, is a painful swollen area in the lower right quadrant. I notice it most when I'm lying down and when my stomach is empty. It didn't used to feel like that... and for the past 4 years, it is always there, aching a little, and swollen to the touch (told dr's but no-one seems to think it is too much to worry about). I recently had food poisoning (from raw salmon - probably salmonella) and although I was violently ill, I felt like a healthy 33-year-old having a 'normal' reaction, rather than this awful unexplained set of symptoms that just make me feel like I'm way beyond my years... Sorry to be so long and so 'down' about it all... I suppose my main question is does this sound familiar (i.e. gluten response to contamination) or does is sounds like something else that you've experienced? Another food intolerance? Another health issue? Thank you very much for your time. Josie
  12. Hello, I was wondering if anyone else has had polyps found. The gastroenterologist found more than 30 polyps when I had a colonoscopy done (a year and a half ago when I was 31 years old). Fortunately, they were all hyperplastic and not of the type that tend to be pre-cancerous, after the biopsy. He removed most of them. I have not had a formal celiac diagnosis but was simply wondering if others who are celiac or gluten intolerant also have multiple polyps. The gastroenterologist did not report anything else unusual (he did not even observe villi damage) except for the fact that my insides were not 'clean' despite having followed all pre-procedure instructions to the letter. This made me wonder if my digestive system was sort of 'slowed down'. Does anyone else feel that they might be processing food slowly? It's an impression that I have about my own digestive system. Thanks a lot, Josie
  13. Quinoa Or Flouride

    I've had really strong reactions to fluoride. I'm originally from Europe and grew up in the UK and Belgium, where they don't add fluoride to the water. When I first moved to the States I had 8 months of unexplained D (10x/day)... I was drinking filtered Brita water. When my D disappeared on going to Europe and promptly returned when I came back to the States, I decided to switch to mineral (or Reverse Osmosis) water. One time recently, I even got a reaction after just having one cup of tea out (so with tap water). It is impossible to avoid completely (soup, juices, milk substitutes...) but if I drink mineral water at home and order sparkling water when at restaurants, I no longer get D. Good luck! Josie
  14. Hi there, I frequently consult this site and find it both helpful and reassuring. I posted here a couple of times a while ago... but am now going to post a few separate questions in the hope of finding some answers, as my symptoms seem to be continually getting worse despite being strictly gluten free (to the best of my knowledge) for 3 years now (I'm 33). Original Enterolab results (July 2009): Fecal Anti-gliadin IgA: 18 Units Fecal Anti-tissue Transglutaminase IgA: 13 Units Quantitative Microscopic Fecal Fat Score: 558 Units Recent results from a stool test done by a different lab (April 2012): Anti-gliadin sIgA: 13.4 (flagged as 'high' - described as 'screening marker for gluten sensitivity'). Fecal sIgA: 135 (not flagged - range is 5-161 mg/dl) All 'absorption' tests for fat malabsorption were in the normal range. My understanding is that the original Enterolab results being above 10 Units show that "Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity." My doctor is saying that the fact that my recent results also show an elevated anti-gliadin shows that I am definitely gluten intolerant and still being exposed to enough to be having an adverse response (and according to him this lab is less sensitive than Enterolab for this measurement - making them more significant, as it might have come out higher with an Enterolab test). On a positive note, it seems that fat absorption is no longer an issue now - Although I was a very skinny child, I was always tall. I am not too thin now but relatively slender considering how much I eat!!! My doctor in Belgium felt that my cholesterol was too low about a year ago, and told me to eat butter (best doctor visit ever - not sure they'd take the same approach here in the US!) and so until a couple of months ago, that was the only dairy I was eating. Would others agree from experience/knowledge that this result is a clear confirmation that I am still consuming gluten unknowingly? And also that I am definitely gluten intolerant? Has anyone experienced this anti-gliadin IgA go down once they were totally gluten-free (and symptoms were subsiding)? Also, when I previewed my post the lab name came up as (company name removed - they spammed this forum and are banned) - I am now wondering whether this lab is even 'trustworthy' or if I'd be advised to return to Enterolab (although the cost is very high!). I'll post other questions elsewhere (as I don't want this to get any longer!) but really trying to determine how 'certain' I can be that getting even more careful about gluten is my next best step. Thanks a lot for your help and any thoughts! Josie PS (in case this is useful): Full Enterolab results: Fecal Anti-gliadin IgA: 18 Units Fecal Anti-tissue Transglutaminase IgA: 13 Units Quantitative Microscopic Fecal Fat Score: 558 Units Fecal Anti-casein (cow's milk) IgA: 7 Units HLA-DQB1 Molecular analysis, Allele 1: 0202 HLA-DQB1 Molecular analysis, Allele 2: 0202 Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2) Fecal Anti-ovalbumin (chicken egg) IgA: 4 Units Fecal Anti-saccharomyces cerevisiae (dietary yeast) IgA: 5 Units Fecal Anti-soy IgA: 6 Units