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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.

Galixie

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Galixie last won the day on December 31 2016

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  1. The hematologist doesn't think my iron is a problem and I totally forgot to bring up the itching (mostly because I was so floored that he didn't think iron was a problem that I was speechless). He does think I have low blood volume. Getting that confirmed is not going to happen, so he's treating me for that based on symptoms (mainly hypotension and anemia symptoms). I still have the itching and I'm even more confused now than before because, last night, I found one hive-like spot on the back of my shoulder. That's all. Just one. I don't imagine that iron deficiency itching causes any hives and one single hive doesn't really seem to match DH either. I'm so puzzled I don't know what to make of it. Now that the low blood volume is being treated, most of the other possible causes for my dizzy spells should be addressed and it's now time for me to go back to a gluten free diet. If the itching is DH, how long does it normally take, after going gluten free, to stop itching?
  2. Sadly there are a bunch of reasons why it hasn't been treated yet. 1. The doctor who I asked to check my iron levels isn't my regular GP, so when everything came back "in the normal range" she didn't think anything needed to be done. 2. It took a month for me to get a copy of the actual results because record requests are, apparently, that slow. 3. The normal range for iron saturation percent has, inexplicably, been lowered from the previous range of 15-50% down to 10-45%, meaning my 12% result was suddenly not considered low. 4. After I finally got my results, saw that my ferritin level was only 27 and my serum iron was only 38 (both just barely in range) I contacted my regular GP who agreed that I should be treated with an iron infusion. But since she doesn't offer those in her office she would need to find a place to refer me. 5. Then my health insurance carrier changed in the middle of all of this and that added the extra wrinkle of the referral needing to be covered by the new health plan, which I wasn't going to be getting a new card for until mid-June. The upshot is that I have an appointment on Monday to see a hematologist that I saw once before about something completely different who may or may not decide that my iron level needs treating. Either way, I suspect I'll still have a wait even after that appointment before I get actual treatment for the deficiency. In the meantime I'll be trying not to scratch myself bloody in the 90 degree heat. Fun times.
  3. I do plan to go gluten free again. I've just been so fed up with my body's various problems that I needed a break from at least one of them, ya know? It looks like iron deficiency can also cause this type of itching, so it might be related to that. All of the problems I'm currently dealing with (dizziness, hypoxia, iron deficiency) were all happening while I was still gluten free. (The dizziness stopped after going off of gluten in 2015 and came back last November due to the concussion.) Only the itching is new since going back on gluten about a month ago. Considering that I had an iron saturation percent of 12% back in April and it still hasn't been treated yet, I can only imagine how much worse it has become. I bet that is the source rather than DH. I wish I knew for sure...
  4. I know I'm adding to a long and old thread, but as I'm really just describing my own idiocy, I figure I don't need to create a separate thread for it. lol In the realm of 'don't try this at home': To sum up my previous experience, I've figured out that I have gluten ataxia and it is the only symptom that I was able to clearly point to after reintroducing gluten after a few months off of it. I have some weird intermittent hypoxia issue that no one can figure out (and which is, presumably, not related). I was in a car accident last November that gave me a concussion that I am still trying to recover from. And, last but not least, I'm currently iron deficient on top of everything else. So, since I now have three additional possible sources of dizzy spells (and after six months of waiting in vain for the concussion to heal) I finally got so fed up that I decided to go back on gluten. I figured all it does is make me dizzy, and I'm dizzy anyway, I might as well enjoy bread. I am soooo itchy! Pretty much all over, all of the time. The only known allergen I have is grass (which does give me small hives if I inhale too many particles), but I have not had exposure to grass lately, so the itchiness must be something else. It can't be DH if there's no rash, can it? The areas that it has been bothering me most have been on my back, around my collarbones and neck, and on my forearms. I have no idea what else I could be reacting to.
  5. Thanks you guys. I think part of my sadness is that, lately, I am seeing items that I used to buy regularly at my local store getting discontinued. I can understand that gluten and dairy free stuff is not a big seller, but it really sucks when your go-to items are no longer available. Dairy is kind of a big deal for me. I'm sensitive to both casein and whey proteins (which eliminates a whole lot of foods that have had their protein content bolstered by milk proteins). I have found that I can handle one meal with significant dairy every few months and be fine, but I can't handle frequent small amounts without it making me ill. Go figure.
  6. I miss being able to find food I can eat. After going up and down the frozen food isle at Albertsons (twice) and not finding any frozen dinners that were gluten and dairy free, I went over to the ready-made counter and asked the attendant if the roasted chicken had any gluten in it. He looked puzzled, so I asked if there was any flour in it. He told me he would check the package. He looked at something in another room, then told me he didn't see anything like that in them. So I bought a piece of chicken and took it home. As I was opening the bag I noticed what was printed on the sticker. ~Sigh~ Lately I find I am getting tired of rice and eggs (the only things I can cook that fit into my schedule). I've started to hate food and all of the trappings that go with it. I'm seriously considering Soylent (which is not certified gluten-free, but would probably be a low enough trace amount that it wouldn't bother me). I realize that giving up on eating is not an ideal solution. The most annoying thing is that I am somehow gaining weight lately (too many potato chips, probably). Grr.
  7. I was watching the news a couple of nights ago and there was a story about a treatment for celiac that is under development. It sounds kind of neat because some researchers have been able to invent an enzyme that doesn't exist in nature that can destroy gliadin. Obviously the goal is to treat people with celiac disease. It sounds like it might also be promising for NCGS too. It might be something that's already been mentioned on the forum, but if not I thought I'd bring it up. It's still in development so probably a long ways from becoming an actual treatment. It's hopeful to hear that progress is potentially being made. This is info about it: http://hsnewsbeat.uw.edu/story/uw-spin-out-seeks-develop-celiac-disease-therapy This is the news story I saw: http://komonews.com/news/healthworks/uw-researchers-developing-cure-for-celiac-disease I wasn't sure where to post this, so if it needs to be moved to a different section that's fine.
  8. I did and I left her a thank you note also.
  9. I suspect, considering how long ago you posted the question, that you have already gotten your answer. I'm sure it's different for everyone. I ended up eliminating dairy (kind of by accident, but I decided to just roll with it when it happened) and the first thing that happened for me was a splitting sinus headache. I think that was within the first couple of days. Right after that my sinuses completely cleared up for the first time in years. I think it took at least a week for me to notice that it was also helping with my gut issues (maybe longer. I don't really recall now). I did go through some withdrawal (cheesecheesecheesemusthavecheese!) but, once I got past that, I stopped craving any version of dairy. I stayed well away from dairy for about a year and I now find that I can indulge in a meal that has dairy once every few months and have no noticeable effects. I went dairy free before I gave up gluten and sometimes I wish I could go back to just being dairy free. It's so much easier than having to avoid both.
  10. If only I had a medical diagnosis... ::sigh::
  11. I had two experiences this weekend. One was unusual and one was not. The unusual one happened at a restaurant. I had ordered a burger on a gluten free bun. We were waiting for our food for a long time and had just begun to speculate on what the hold up was, when our server came over to explain that my burger had been put on a regular bun and she had needed to explain to the cooks that they couldn't just swap the bun out. So they were busying remaking it. It was so nice to have a server who is aware! She was used to dealing with allergy stuff for one of her kids, so she was really on top of it. The not unusual experience happened at a party when someone who doesn't know my whole life story (which is what it feels like I'm trying to explain if I start in about the entire topic of gluten and how it relates to me personally) asked me how I know I need to be off of gluten. The hardest part about that question in that type of setting is that it just takes too long to explain. I really want to have people understand the reasoning behind my choices, but I prefer not to bore the uninterested parties with details they don't care about. In the end I deferred until later and wrote him a long email instead. How do you handle the question of how you know you need to avoid gluten? Do you have different answers for different occasions or social settings? I find that I'm usually at a loss for words because I want to be concise but my story just isn't a concise one.
  12. You'll want to keep an eye on all your vitamin levels, as absorption problems are quite common with gastritis. You've probably already looked it up, but this is the WebMD page on gastritis. http://www.webmd.com/digestive-disorders/digestive-diseases-gastritis It's not the best article as they mention 'treating' it with antacids which is pretty much the opposite of helpful. (https://www.sciencedaily.com/releases/2002/01/020115074441.htm) If the medication they were going to prescribe is an antibiotic, you might want to reconsider. If you have H. pylori, an antibiotic is the only sure way to get rid of it. If you don't get rid of the bacteria, the B12 deficiency will worsen.
  13. You mentioned PCOS and also that you're B12 deficient and that rang some bells with me. Are you getting treated for the B12 deficiency? I ask because I was once diagnosed with 'atypical PCOS' (I had small peripheral cysts on each ovary but normal hormone levels). It was later discovered that my B12 was low and, after several months of B12 injections, my PCOS simply righted itself. Also, B12 deficiency can cause a whole host of neurological problems. I wonder if your doctor included the AGA tests because those are still the only tests that can detect some NCGS people. I only tested positive on an AGA IgA test and it had me going around in circles for a long time, so I understand what it's like to not know for sure. It sounds like you've had worse symptoms than I have. I ended up going off of gluten for almost 4 months, didn't think anything had changed at all, went back on it for two weeks and discovered that my dizzy spells (which I had never associated with gluten) came back within days. In the end, if you feel better off of gluten, it's best to stay off of gluten. If you're taking tablets for B12, you might want to try an injection to see if it works better. Absorbing B12 through the digestive system is ridiculously complex and problems can happen at multiple stages in the process. Some people even have genetic mutations that keep the body from absorbing enough B12. The key is balance. B12 works best when there is also enough folic acid and iron for blood production.
  14. Thank you Boron. So far I haven't been given any recommendations on treatment, but I do think I prefer not to have surgery if I can avoid it.
  15. Yeah, my hemoglobin always seems to be around 13, so it's totally fine. Thanks for all the info! I'm still stumped on my oxygen problem. If my heart and lungs are both fine, then it has to be a blood disorder of some kind. The weird part is that there really doesn't appear to be any anemia going on, so it doesn't make any sense whatsoever. Hopefully my doctor will figure out whatever it really is (and fix it!). Keep your fingers crossed for me.