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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 OHtummytroubles

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  1. Can Dh Be Strictly On Lips?

    Thanks for the responses. I no longer have the "bumps"; just a completely swollen bottom lip:( It looks like lip injections gone wrong (or what I would imagine that to look like). Of course it hurts and burns. I had taken a probiotic for the first time the same day I ate the beef and noodles and this is when the swelling started. I saw my allergist who only gave me instructions of "stop probiotic/start mangosteen". So; a week later i haven't been taking the probiotic (Culturelle), but I still have a swollen owie bottom lip. So frustrating! I know I have multiple food allergies, but they have never caused this reaction in the past...why now? And How would I ever know what food or item is causing the reaction? Pretty tired of seeing the allergist when they can't give me good answers. All they ever say is "wow, you are allergic to alot", and "try to avoid the food you are allergic to"...which are way to numerous to avoid according to the allergy tests.
  2. Can Dh Be Strictly On Lips?

    Having a pretty intense reaction the last few days where my lips are very inflamed. It's not just "chapped lips". Have a few noticeable bumps w fluid. The rest of my lips around them fee like sandpaper. Like mini lip colored bumps that you wouldn't be able to see just looking at me. It's über uncomfortable. I did try a probiotic for two days while this breakout happened. Thought maybe an allergic flare to it; but I have always suspected I have celiac, and it just so happens I made beef and noodles the day I had this strong reaction. In the beef and noodles I used wylers bouillon cubes and it was so super salty. Could the salt in the bouillon cubes and the noodles have caused a lip DH outbreak if I do in fact have celiac, or are lips precluded from DH normally?
  3. Possible Dh? (Pics)

    Thanks for the reply. I will do my best. I know people here can't really give me answers without knowing history, test results, etc. Was just a random shot in the dark and a silent prayer for an answer/pain relief. My kids deserve me at my best...and I am really trying for them. If they were older I wouldn't be as worried.
  4. Dh?

    The bumps scar and leave little purple patches that last for months as eventually, 6-mos to a year or so they become white/pale. It's never numerous, but I understand that time may come. I don't even mind the breakouts as much as my tummy pain unfortunately:/ I will try gluten free again...but I feel I have so much stomach damage and other food allergies that its just a lost cause. I stop gluten, then in a week or two when I still have stomach issues I give up. It's hard to deprive yourself of so many foods when food is all you have left as a means if comfort for the pain you are in :/
  5. Possible Dh? (Pics)

    Thanks for the response. I would take te breakouts/itching any day over the severe stomach pain that afflicts me daily. My stomach literally revolts 24/7. It's just mentally exhausting. Was hoping that all if the symptoms together would provide a clue. Going just gluten free has never helped me completely as I have other allergies. Unfortunately I guess I am just one if those people who will be "out of luck" and have to live in pain:/ Hard to accept, but after this long I've given up hope.
  6. Dh?

    OK...last of the pics, I promise :-) In the post earlier I sent links of pics I had taken of my most recent outbreak. This hive'ish swelling before turning into little blisters has happend a few different times in the last 2-3 months. While thinking about it further, I realized some of the little bumps I always blow off may be DH related. Maybe? I have always had these little red breakouts by my hairline, on my shoulders, and on arms. They aren't terribly itchy in comparison to the welts in my previous post, but I literally can't remember a time "not" having red breakouts in these spots (hairline/shoulders/arms). Maybe I am just fair skinned and sensitive...I don't know. I would just love to have a fix for the tummy issues I've been plagued with for so long, so I am hoping these little bumps prove to be "clues". Hairline: http://m1354.photobucket.com/albumview/albums/SLB5757/Mobile%20Uploads/IMG_3024_zps8cd4e787.jpg.html?o=0&newest=1 Hairline: http://m1354.photobucket.com/albumview/albums/SLB5757/Mobile%20Uploads/IMG_3017_zpsa6c8ed16.jpg.html?o=1&newest=1 Shoulder: http://m1354.photobucket.com/albumview/albums/SLB5757/Mobile%20Uploads/IMG_3008_zpscf778143.jpg.html?o=2&newest=1 Arm: http://m1354.photobucket.com/albumview/albums/SLB5757/Mobile%20Uploads/IMG_3006_zpse56b2396.jpg.html?o=3&newest=1
  7. Possible Dh? (Pics)

    Good afternoon all I am sure this is a stretch, but wondering if anyone could take a few moments and look at my pics to see if they believe I may be in the middle of a DH outbreak. With the swelling involved, I was assuming they were bites, however this has happened multiple times over the past two months and will be very random in nature as to when it appears. I can not pinpoint any specific cause...I only know it is unbearably itchy and inflamed when it occurs. The itch is so intense that I rotate hydracortisone and benadryl with minimal effect on the problem. If I itch the areas/rub the areas the swelling seemed to extend further out in the initial inflammation period. These most recent pics were taken starting Friday, Saturday, Sunday, and today Monday to show the progression. Once inflammation goes down you can see the smaller blisters that are fluid filled. I will get the small blisters on other areas of my body, not just wrist area. This has happened on lower face/chin, above knee/upper leg, and arm. I seem to always have areas sporadically that will be blisters that break open with the clear fluid. They will last quite some time and always leave a scar. The scar starts out a purple-ish red and then over time will fade a bit. I have been food-allergy tested and am told I have 28 food allergies, but I cannot seem to figure out how one would eliminate that many foods, so I haven't eliminated any foods at this point. My allergist basically gave me an epi-pen, told me to not eat the offending foods, and sent me on my way to figure it all out. This is my second round of testing ( a year later ) which confirmed the allergies. He basically told me to avoid all vegetables (Beans/Peas were high allergen), Wheat, Corn, Rye, Barley, Soy, Potato, Tomato, Carrrots, Celery, Cinnamon, essentially all nuts...etc. Meats & dairy were A-OK but I am lactose intolerant. Soooo....the pics: This is right when it started: http://m1354.photobucket.com/albumview/albums/SLB5757/Mobile%20Uploads/IMG_2887_zps43d40646.jpg.html?o=9 Itchy/inflamed if even touched: http://m1354.photobucket.com/albumview/albums/SLB5757/Mobile%20Uploads/IMG_2914_zpsa5e221ae.jpg.html?o=6 Another pic...after inflamation started to go down: http://m1354.photobucket.com/albumview/albums/SLB5757/Mobile%20Uploads/IMG_2918_zps51e64e0f.jpg.html?o=4 After shower (super itchy in shower): http://m1354.photobucket.com/albumview/albums/SLB5757/Mobile%20Uploads/IMG_2958_zps08ceb624.jpg.html?o=3 In daylight, inflammation going down and you can now see the blisters: http://m1354.photobucket.com/albumview/albums/SLB5757/Mobile%20Uploads/IMG_2961_zpse70bb7c3.jpg.html?o=1 Today the inflammation is much less, but blisters are noticeable: http://m1354.photobucket.com/albumview/albums/SLB5757/Mobile%20Uploads/IMG_2967_zps51c0950d.jpg.html?o=1&newest=1 http://m1354.photobucket.com/albumview/albums/SLB5757/Mobile%20Uploads/IMG_2971_zpsc705ae1a.jpg.html?o=0&newest=1
  8. Well I broke down and scheduled a confirmatory EGD for 11/19. Any suggestions for what I need to do as far as amount of gluten to consume daily before then? It really does make me feel terrible - sometimes unbearable, but I want confirmation. Even if the EGD is negative I will have peace of mind that nothing is wrong internally with me. They will re-draw a Celiac panel and vitamin levels that day as well, so I want to be sure that I am doing whatever prep work I need to with the challenge. So far today I had a baked potato w/cheese and a plain grilled chicken w/no bun. Skipped breakfast and will have something for dinner. I know this is not enough or even any gluten at all, so I need to know how much I need to consume to know for sure if I react to gluten or not. Is it 1-2 gluten items a day, 3-4...etc. I really do not know how I will do it considering it gives me such problems I had two "butter cookies" in a little tin yesterday and was in pain all evening. It really didn't digest. Woke up in pain today still....and had to pop some tums to feel a little better. It's going to be a long month. I am seeing a"Dr. Kirby" for the EGD who works with my doctor at the Cleveland Clinic. From what I read he is knowledgeable, so I can at least rest assured that he will be thorough. He has done many Celiac studies and what have you Thanks!
  9. A Few More Questions

    SaraKat, I am assuming that the Dr. wouldn't schedule an endoscopy unless my bloodwork shows a high enough ttg-iga level - so maybe they will order one once I do the second test. I am all for it when she decides to schedule it. The last scope I had done was back in 2006 when all my tummy troubles started (after childbirth).I had went down to 92 lbs at that time, and hadn't really eaten anything but Ensure for 6-8 weeks before they decided to do a scope. Knowing what I do now - I bet they couldn't see any gluten/vili damage because I wasn't consuming anything but gluten free Ensure for weeks and weeks :)I occasionally ate some plain white rice or grilled chicken - but again no gluten. In 06' I didn't even know about Celiac to tell them I had not been eating gluten. 38 to over 150 in two weeks? That is a high jump! Wow! Maybe me upping my gluten to daily consumption really would make all of the difference in levels. I had done about 5 months gluten free, then went to eating gluten again back in July. I just do not eat it often or daily because I do have so many issues with my tummy/pain. I will suck it up and eat it regularly and retest at the clinic in a few weeks. Thanks for your response
  10. A Few More Questions

    Cass - I had the full Celiac panel at Cleveland Clinic a few weeks ago. Everything was negative except the ttg - iga which was at 16. That is still considered negative by CC standards. They require it to be over 20 to be a "weak positive". Different labs obviously have different levels. My total iga was over 300...so I am not IGA deficient. I was mainly wondering if one should actually do a gluten challenge eating large quantities of gluten just to get a positive result. If cross contamination or very small amounts of gluten can affect blood results of diagnosed Celiacs - why would anyone have to consume large quantities to get positive results when they are at the diagnosis state? Mushroom - I googled psoriasis - and I definitely do not have those white patches or even raised red patches or any kind of a rash. It is just unusually dry or painful feeling. Maybe I am too sensitive? They really do not look bad....just feel a bit raw for some reason. Hmmm. I used some CeraVe cream on them today and it worked great!
  11. The Cleveland Clinic has agreed to retest my Celiac panel since mg ttg iga was a 16 (my request for them to retest). I also want them to test a few basic vitamins such as the B vitamins and D. My concerns are as follows: 1) Should I even bother re-testing? Are you only technically Celiac if you have a high number such as 80 or 100+ on a ttg iga? I do not want to be grasping at straws or looking for a diagnosis. Just thought it was weird that it was even at a level 16. i really only eat breading if it is on a chicken nugget and do not eat pasta or other bread daily. I wanted to retest after actually consuming a bit more gluten to see if the figure would change. But then I wonder....people who are say a ttg iga of 80 who go gluten free retest their levels after 6 months or so and hope to see them go down. Typical reasons for them not going down are possible cc - right? If cross contamination of a few crumbs could skew test results for ttg iga - then me eating only breading on chicken nuggets should be enough if I was truly Celiac...right? Why even do a gluten challenge if true Celiacs really would react to even crumbs in their ttg iga levels? 2) How much bread product/pasta should I eat daily and for how long before I retest at Cleveland Clinic? Keeping in mind that right now I do eat some gluten...and have been for a few months (just not really daily or large quantities). 3) Does anyone else get terribly dry elbows that cannot be moisturized??? I literally use lotion maybe 5 times a day (Nivea cream...Jergens cherry almond...various kinds to try and heal them), but they stay dry/cracked/irritated. This is the only area that does this on me, but it gets very bad to where clothes brushing up against them hurts. Kind of a pain when you have to be at work 8-5 at a busy University. OK...enough of my rant/questions. I am just very perplexed right now. Everything points to Celiac for me....but I like to have rational answers for everything
  12. Tests like total IGa are usually done in-house, but the gliadin, EMA, and ttG tests are usually sent out from your lab to either Promethius, Mayo Clinic - or another Celiac testing lab. That is my experience. I would definitely expect a week or two for labs to come back, unless you go to a celiac center. I went to Cleveland Clinic and had them within a few days posted on an electronic chart option.
  13. 1) Call the company and make sure you speak to someone regarding the test sample to make sure it was received. Document anyone you spoke to and the answer youw ere given. 2) See if you can dispute the charges with your credit card company/bank - depending on the payment method. Again document everything. 3) Turn company in to the Better Business Bureau? You had a question regarding how you could get the testing done otherwise. You can go to your primary doctor who can order the testing. I have had allergy testing done about 6 times now due to my many food allergies. An allergist could do skin testing and test for multiple foods at once, or your doctor can order the tests be done via. a blood sample or "RAST". I had both. I will tell you that they took a vial of blood per allergen being tested for when they did the blood tests for wheat/barley/rye/oats...etc. It seemed to me like they should be able to just draw one vial and test for everything, but that was not the case with this lab. My doctor wrote out a lab slip for the bloodwork, I went to a local lab of my choice to have the blood drawn (your local hospital should have an outpatient lab you could use), and they billed my insurance company for the fees. I am unsure of how it could be done without insurance for a low fee though. You mentioned being a college student. I work at a University and they have insurance available to all of the students here. They also have an on-site health clinic that has physicians. If you went to the health clinic (if your college has one), they should be able to help you.
  14. Negative Bloodwork

    I will check out the breakouts with a DH Ravenwood - thanks! They are always fluid filled, and never anything but clear fluid. I have never had a "pus" filled breakout which I thought would be indicative of acne. The fact that they last so long, and are extremely itchy is what had me wondering if it was DH. Maybe this will be my key to diagnosis (if I can find a good dermatologist in my area). My mom sees a gentleman for her Rosacea, and he works with my niece as well for her acne problem - so maybe the family derm can assist:)
  15. Negative Bloodwork

    Thank-you Skylark - I will look into that. I think I am going to request a new ttg IgA test because I am so gluten light (some days I only have grilled chicken and a baked potato - or rice). I rarely have bread/breaded items because I have such bloating and indigestion after I eat about anything. My plan is to: 1) Eat gluten heavy for a few weeks more and have a repeat ttg igA if Dr. will order it. My ttg IgA was elevated at 16...just didn't meat the standard of weak positive at a 20. 2) Possibly consult a dermatologist and biopsy the "bumps" I get often and currently have on my chin area and back of neck. I really never thought to look into them as DH because it wasn't an "all over" kind of rash. There are maybe 4 or 5 little blister-like bumps that will leak a clearish liguid if I itch them too much. They itch so bad that I end up breaking the blisters often and will have the leaking clear fluid for quite some time until they finally end up crusted a bit. Typically they last at least 3 weeks, but this time the chin/lower cheek by chin ones have lasted for over a month. They certainly leave red/purple scars...but I really never thought to look into DH because it wasn't like the pictures I see on Google where it will be on a patients arms, bottom, knees...etc. Mine come on chin area almost instantly after I eat pizza and will last weeks. I have a crazy itchy one on my neck/hairline right now, but again it is a small area - not "many". I just do not want to go looking for something that isn't there, but then again I do not want to miss something either.