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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About healthygirl

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  • Gender Female
  • Interests List of things I love to do:<br />Run (marathon distance and trail running...bring on the dirt and mud!!)<br />Cook<br />Camping<br />Spend time with my son<br />Work (I am a personal trainer and love my job!)<br />Travel<br /><br />List of things I want to do:<br />Hike Machu Pichu<br />Open my own training studio<br />Cycle across Canada<br />Visit Baffin Island and buy a beautiful soapstone carving from a local artist.<br />Kayak surrounded by narwhals.
  • Location Canada
  1. Well, my doctor is sure it was just a viral thing I had after all and not an allergic reaction so no allergy testing for me. It actually makes more sense it is viral based on all the flu like symptoms and the time it took to come and go. I am back into my regular routine, taught 2 spin classes and a conditioning class and went for a run over the last few relapse, so am good as new. In the meantime, I am planning all my summer running and am looking forward to the next me forget the last one!
  2. I Needed More Mystery.

    Okay, so I don't have pityriasis rosea and it wasn't a virus fluey thing that interfered with my marathon. Apparently I am experiencing a full body allergic reaction to something....oh fun. I was covered in big blotchy spots as of end of day yesterday and figured it was the pr I was diagnosed with yesterday...this morning woke up at 4, had to pee, and took a look in the mirror and it wasn't pretty (not that big splotchy spots were). My eyelids were all puffed up and I was covered from the neck down with what looks like red measles. So I hopped into the car and drove back to emergency at which time they made the diagnosis of allergic reaction to something. I've eaten nothing different and can't imagine what it would be. It was slow coming on (took about 6 days from first symptom to reach this point) so it must be something I am exposed to on a continual basis. I was not in my house for 3 of the 6 days, so can't imagine that is something specific within my I am off to see my doc tomorrow for a referral to an allergist. For the rest of the day, I'll live in a bendryl world getting the rash under control, and back to hoping someone can find an answer.
  3. When Marathons Go Bad

    So my first marathon in a year was this short, it was a race gone bad. A few days before I started feeling vaguely fluish, but kept pushing the thought aside. If I don't think it, it can't happen, right? So after a couple of days of sore eyes, sore skin, and drenching night sweats, I stupidly headed out Sunday morning for the 8 am start. I was all excited with my new Garmin 305 strapped to my arm. The first hour was actually pretty good! I was right on pace, but then things went down hill quickly. My Garmin was set to "notify" me with this annoying sound when my pace slowed beyond a certain level I had set, so the stupid thing was buzzing every 30 seconds and I couldn't figure out how to turn the feature off. My joints hurt everywhere, every shotblok I ate I was sure was coming right back up, and I just felt horrible. I didn't mind the "good job, keep going" comments from racers passing me, in fact I do the same thing, but I did mind the people that either put their hand on my back and pushed me faster telling me I could do it (yes there were a few runners that did that and it isn't like I ever saw them in my life before) and the people who said, "come on, run" when I was walking....I felt like saying some really nasty things back. I should have turned off at the 1/2 Marathon point, but no, kept going. The race was on a trail system which was lovely and close to nature, but in cases too close....there were sections where the smell of stagnant pond water and goose poop was almost too much to handle. Finally at 26.5 km I met up with my in-laws on route to cheer me on, so I hopped in their car with no shame and said I'm done, take me home. Later that day my lymph nodes in my neck swelled up and this morning I woke up with a rash. Off I went to emergency thinking measles, but the doctor says they are pretty sure I have a virus called pityriasis rosea. Bad, rotten timing to come down with a virus right before my marathon. I am going to take it easy for a few days, the virus is not highly contagious, but my job is pretty active. I'll have to be back at it soon, but will try to keep the intensity down a notch. Apparently the lovely rash I have can last 6 - 12 weeks but I think my rotton feeling flu symptoms won't last that long. So that is the story of this race. We'll see how the next one goes.
  4. Getting Ready To Run

    I am 1 1/2 weeks away from my first gluten free marathon. I really don't think food wise it will be any different than the others I have done. I use Cliff Bloks and Power Gels as food during the run...I had found previously I could tolerate Power Bars as well, but I think they have oat flour...if they don't I'll probably start using those for my next round of training. I am gunning for a sub 4 hour time, so we'll see how it goes. My PB is 4:00:21 so if I shave even 30 seconds off my time I'll meet my goal!! The biggest challenge will probably be the post race food, so I'll just pack my own yummy treats so I'm not tempted to chow down on bagels and cookies. Next up for endurance will be the Death Race in August, a 125 km, 24 hour race (which I am doing as a relay member). I have a 38 km leg that covers a mountain summit and descent. I am so excited....I picked up my trekking poles to run with the other day as I suspect I'll need them. I have my Garmin 305 on order so I don't get lost in the bush and will probably pick up some bear bells as well. I also need to get a head lamp, as part of my run could potentially be after the sun goes down. After that it is off to the Barbados in December for another marathon. I was talking to someone who just got back from there and it was about 38 Celcius and then humidity on top of it (I think that is just over 100 Farenheit). In December it will be a bit cooler, and the race will start at 5:00 am, but will still be around the 28 Celcius mark (over 80 Farenheit) and will heat up quickly once the sun comes up. I think that will prove to be the most challenging event I will have done to date. In between all these big events I have some small trail runs planned to help keep me in line. I am finding that I am able to eat lots of grains to keep my carb intake high enough (you can only eat so much fruit and veggies, and I do eat alot of those, too!!) and some I use in lieu of my old breakfast favorite, oatmeal. Rice or quinoa are probably my favorite. I have to say I really don't care for buckwheat cooked as a hot cereal. I had some left over buckwheat the other day and stirred in plain yogurt, banana and honey to hide the taste of the buckwheat and that was okay. Something about buckwheat just tastes yucky to me...oh, and I like Teff. It has an unusual flavour, but again, with a bit of honey and yogurt and fruit stirred in it is pretty good. Anyways, I seem to be keeping up with all my activity and am sticking with my gluten-free diet with no problem in fact haven't found it a difficult adjustment to make. Since I prepped all my own food before anyways and rarely eat out, I think that helped!!
  5. Celia Genes

    Hi Willow5, The main genes for autoimmune celiac are HLA DQ 2 and 8. However many experience gluten intolerance with other HLA DQ results, particularly if they are a double results (ie: HLA DQ 1,1 or 7,7). Hope this helps, healthygirl
  6. Thanks, Joni....I'll pass that on to my sister as well...
  7. Glad you found the thread and found it a helpful explanation for your hairloss. The more stories I can share with my sister, the more I am hoping she will try a gluten free diet to reduce her symptoms, the alopecia being just one of a few autoimmune disorders. Good luck and hopefully you find some more linkages in this site as to how an intolerance to wheat or gluten may be affecting you. Sometimes the connections aren't obvious until someone else mentions it and then you realize that what you were experiencing wasn't normal...I'm a firm believer that if a person is allergic or intolerant to a substance it is more than just a nuisance...the reaction can manifest in many ways and years of the body bearing the brunt of something it can't tolerate will eventually start to cause more severe issues somewhere. Glad you figured out the source of your headaches and as a bonus you get your hair back!!
  8. I Think I Know Now....

    Okay, so I think I now have an understanding of my results.... I am HLA DQ 1,1 (5,6), which means I am a double DQ1 with subtypes 5 & 6. According to Enterolabs (who I did not test through as I got genotype testing done for free here in Canada) I am positive for genes that predispose to gluten sensitivity and having the double copy DQ1 increases the sensitivity. Had I not had the option for genotype testing here, I probably would have gone the Enterolab route...I know that they can do the testing once a person is gluten free for up to a year and still get accurate results on the full celiac panel, so it would still be interesting to see if TTG, etc. is still elevated, but I don't think it is a necessary step. One of my blood tests showed a slightly elevated TTG (weak positive, but still positive), which is what led to possibility of celiac and further testing, but everything else came back negative. I do think that my slight elevation in blood testing for TTG would lead to Enterolabs finding even higher elevation in the fecal test, but I have been gluten free off and on for about 9 months now (off for good now), and just don't see any point in going further with testing other than trying to satisfy a curiousity of how high elevations were...also, the only blood test they did for me here was the TTG and not the whole celiac panel, so would be interesting to see if the other tests confirm the reaction to gluten. However, I know when I eat it that I am reacting so won't spend my money on further testing to tell me what I know...instead I'll put my money towards buying good food that will keep me healthy!!
  9. Thanks Fedora, I know that I get unpleasant side affects from eating gluten and the side affects became more apparent and seemingly worse each time I give myself a gluten challenge (I did two, one after being off about 4 1/2 months and one after being off again for about 2 months). I don't plan on going back onto gluten so am happy to be gluten free for the rest of my life regardless of what the tests actually mean. But it is kind of nice to know what the genetic results do mean to me....thanks again for your help!
  10. Answers Lead To More Questions

    So now I have more questions (you would think I could just let it go at this point!!). I have been digging around for more info on what DQ5 and DQ6 actually mean. It looks like they are a subtype of DQ1, so am I actually DQ1 (subtype 5,6) which would make me a double DQ1? This is so confusing...if anyone knows the answer please post it here for me and if I find the answer I 'll post it so those looking in the future can maybe stumble across it. Thanks everyone!!!
  11. Hello, I see a recent thread on HLA typing, but thought I would post this separately so it doesn't get lost in the previous thread...hope no one minds. I had my testing done through my GI's office, so didn't go through Enterolabs for results...However, I am hoping some of you experts out there can help me understand the results a little better. What I got was a report that shows Molecular and Serology results...they are as follows: Molecular DRB1* 01 DQB1*05 (I think this is Allelle 1??) DRB1*13 DQB1*06 (I think this is Allelle 2??) DRB3* B3 Serology DR1 DQ5 DR13 DQ6 DR52 I think the DRB3 and DR52 are totally unrelated to the celiac genotyping...not sure why they are there, but am assuming I it is the DQB1*05,06 that I should be looking at. From what I have read they are both related to gluten that correct? Also, I have read that 05,06 are actually subtypes of 01, so does this mean I am a double 01 or is that unrelated? I have had positive dietary response to going gluten free, so plan on staying gluten free no matter what, but am just curious if anyone can shed more light on the results or point me in the right direction. Thanks!!!
  12. Answers At Last!

    I got a call from the GI the other day indicating that I had not tested positive for either gene that would predispose me to Celiac disease...I requested a copy of the results be mailed to me and I am so glad that I did...and they arrived so quickly. Turns out I don't have the HLA DQB1 08 or 02 which are the 2 main celiac genes. However, what the GI didn't tell me is what I did have which is HLA DQB1 05 and 06, which I have discovered are two of the genes implicated in gluten intolerance... So having double genes for gluten intolerance gives me enough answer. I am off gluten for good and don't need to worry about whether this was all in my mind...I consider myself a pretty grounded person, but it is nice to have the answers. I think I would have stuck it out gluten free regardless as I just felt better and knew it was the right thing to do, but human nature kicked in and it just feels good to know that I am justified by the results. So for anyone out there with unanswered questions, keep pushing until you get your answer if an answer is what you need. If you can go forward without conclusive data to back up your decision, then even better for you!!!
  13. Menstruation

    They last about 5 days...start with a a really light day, a couple of days heavier and then really light the last couple. I think it is normal, and I also think as we get closer to menopause (I am 42 and could be hitting peri-menopause) things start to change a bit anyways...
  14. Thank you both....After posting this question I did a little bit of searching on the relationship between alopecia and gluten and it appears there is a connection between the two. I believe her hair loss would be autoimmune related vs. vitamin deficiency...hers is true alopecia where she has a quarter sized spot absolutely bald, but the rest of her hair is fine so far. I think (but stand to be corrected) that a vitamin deficiency would cause more general hair loss vs the very telltale baldness of alopecia....Alopecia is classed as an autoimmune disorder, it just seems like the trigger is not yet known. I plan on passing on to her the info I've found about the linkage and see if I can convince her to try gluten free for a month or two just to see how she feels. She is using a topical steroid cream for the alopecia, but it doesn't seem to be working too well... Thanks!
  15. Hi, my sister has not been diagnosed celiac or gluten intolerant, however, she has a number of symptoms of autoimmune disorders and the doctors just can't figure out the primary cause. Her most recent experience is alopecia (a larger than quarter sized patch of hairloss on the scalp that continues to get larger). She also has symptoms of sjogrens, but has not formally tested positive. She also has several symptoms of hypothyroidism, but again, continues to test negative on that. She did have the TTG Iga test done for celiac, but that came back negative (as did mine). I have mentioned to her that she should try going gluten free to see if it alleviates symptoms, but to date I don't think she has tried the diet. I am just wondering if anyone else has experienced these symptoms (I expect so as I know Sjogrens and hypo-thyroidism are linked to celiac/gluten intolerance, but am particularly curious about the alopecia??) Thanks