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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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  1. Saw The Dr Today

    thank you - apparently there was only one thing they could tell me - that there is a reference range of 1 to 4 for normal, and mine was 1 - so not even slightly elevated. It's probably an ulcer and it fits - just frustrating because the test last year didn't reveal that. I think I probably need to treat the ulcer sypmtoms first, then try to see about gluten. Mainly because, my stomach/intestines are kind of raw at the moment, and eating things like yogurt or bread are easy on that raw/painful areas. Sounds counter productive - but my I have noticed the pain spiking with spicy food and nuts. so I'll just keep going and see what happens. I don't even know if want to see anyone else right now. I just don't want to keep getting shot down, and the fact that both things I was tested for that it could have been (Celiac or Ulcers) - seem to be coming up negative - though I really think ulcers might be part of the problem - whether or not celiac is or isnt. Doctors suck.
  2. Saw The Dr Today

    Seriously disheartened and dissapointed. I'm sick of Drs. I haven't been through what many have I am sure, but I am still frustrated. Last year, after dealing with the intense stomach pain, and being CERTAIN in my mind that I had a duodenal ulcer, I was scoped by my Gastroenterologist and told that i had an inflamed stomach with polyps, but the biopsy was negative for H pylori (or whatever else they test for). He said it was probably stomach spasms and prescribed something for that and pepcid to take for 4 weeks. The pain seemed to subside - though my tender stomach never completely felt right. it always felt sore, right above my belly button. so when the pain reared it's head again, I started researching on my own to find answers. Thought i found it with Celiac. Called the Gastroenterolgist, and the surgeon i had spoken to last year. both said they don't test for celiac and to contact my primary care doc. The above is what happened yesterday. Today, I had a follow up appt with my fertility Dr to discuss my recent miscarriage and following D&C. When I tried to talk to him about Celiac, recurrent miscarriages, and the possible connection, he basically came down on me for trying to google it and research. Said that the most likely cause for my miscarriages is Maternal calendar age (yes, I am 44, and yes I know that is a factor) He was mad because I was trying to determine if there was a link, and said we shouldn't be wasting our time on this, and should focus on trying to get pregnant again as soon as possible. He was very vocal on his opinion of people who research their symptoms and try to self-diagnose (i obviously hit a nerve with him) He said that any stories I read on the internet are sensationalized, and that there are thousands of people diagnosed with celiac, but only a small handful have sensationalized stories of how they were mis diagnosed, mis treated etc. He also said there is no connection between Miscarriage and Celiac. Said that he has celiac patients and non-celiac patients, and he has far more patients that are NOT celiac that have fertility problems than those that have celiac. It was pointless to try to talk to him, so I gave up. I had many arguments i could have brought up, but he had his mind made up, I had hit a nerve, and he was pretty vehement about not wasting time going down this path. He offered to take the blood work tests that I thought my primary care dr had missed - vitamin deficiency test (he said "I don't even know how you test for that, but I can test for a B12 deficiency. Do I think a vitamin deficiency has anything to do with your miscarriages - no, I don't") He basically said he would appease me but it was a waste of time. He offered to run some other tests that he though were relevent (blood clotting disorders and some others) but basically put any digestive questions or possible causes down to a paranoid(my word) patient trying to self diagnose. I felt pretty crappy leaving there. Then I went to the lab part of the office for the blood draw for these tests, and it took 3 nurses and 5-6 pokes for them to find a vein. To add insult to injury - or rather injury to insult in this case, I was told I have to have another hyster (something - i can't remember or pronouce it) but it's a test where they shoot saline up into your uterus during an ultrasound and it can be rather uncomfortable. I don't think it's as painful as one of the other tests they ran, but I have to have another one of those to check my uterus before we try again. I came home to a message from the Primary Care doc - who called to tell me my Celiac blood test was negative. The day sucked. And After doing some more reading - it does sound like a duodenal ulcer fits all my symptoms - I mean ALL of them. Except that it wasn't found on endoscopy last year. But then again - it says they can heal quickly, so it may have been healed and and recurred and if that is the case, the fact that it is starting to feel better, they probably wont find it and it's all a waste of my time and energy. I'm tired of being dismissed and not getting answers.
  3. not sure how productive this will be. He only believes in ordering the one IGA test - I believe it was this one: "tTG-IgA or tissue transglutaminase-IgA" said that the others don't really tell you much and that if you have it, it will blaringy show on this test. He also wrinkled his nose when I told him i didn't have diarrhea, and when I said a lot of people don't - (ok I threw out a 50 % figure because I couldn't remember the actual number) he was like "no, that's not really true" he said that everyone ends up with Diarrhea eventually, it just depends on where they are when diagnosed. That if it's diagnosed earlier, it's caught before the Diarrhea starts.. Anyhow - that's the only blood test he ran - never heard of the SIBO I don't think. So no hope on that one. He seems to be leaning toward it being ulcers rather than Celiac - though he allowed the test. I told him I was scoped last year - no ulcer found - all he said was "well that was last year". So I suppose anything is possible. He put me on a stronger proton pump inhibitor and I'm to check back after 10 days. No answers yet. Blood test should be back by Friday or early next week - we'll see. Thanks all Tina
  4. has it ever been so painful that you have considered pain meds? just wondering. Mine is not always like that but sometimes it is..
  5. I've had it 2 ways mostly - one is the one i described, the other is where i am hunched over and it feels like i was hit with a baseball bat. that's the best description i have - it literally feels like I was hit hard in the gut. I don't know - the more I read, research, the more I am convinced that this is taking me closer to the answer. There are just too many things that reek of gluten. That and or food allergy. I really need tested. I've also read that the gluten free diet isn't enough to heal the gut, that you have to go on the SCD diet to really heal it, which is far more restrictive. I just want to get better so that I can carry a pregnancy - and I'm not even sure that this is my issue. All very frustrating and depressing. that said- I want to thank all of you for your replies - I really do appreciate it
  6. *sigh* I keep trying to convince myself I am not having this, because the diet change kind of depresses me. but I can't escape the bloat, gassiness, stomach pain, etc. It's almost like I think I have found the answer, but I don't want THIS answer. I don't want to face giving up foods that I like for the rest of my life. But then, feeling good, it's hard to put a price on that. So the pain in my abdomen, when it was at it's worse, was radiating to my back. I know I have (or did at least) a kidney stone - but it was found last year so dont know much else about it. I Do have brain fog, tiredness, and not sure if this is related, but have noticed that my fingers are itchy lately (which made me think maybe this is an allergy of sorts?) Then of course there is the fertility issue -but I AM in my early 40's so that could be a cause. I've had 3 miscarriages, in the past 4 years. It could be my age, but everything they have tested shows my system is completely normal. I was out of whack on my cycles, but there was no explanation for it - all my hormone levels and everything were normal. it's just like my cycles were off (missed like 4 in a row) because the timing of things weren't firing correctly. My body tried to ovulate when my period started - as odd as that sounds, the fertility doc was perplexed. I went in on day 3 of my cycle, and he told my on ultrasound that my uterus was about to ovulate, we - not really argued - but debated it, as I said i just started my period. He ran blood work and proved I wasn't ovulating, but my uterus thought I was. Things were just firing out of whack - and once he forced them on the right order, I got pregnant - WHAM! first try. but sadly, lost this one at 9.5 weeks (found out at 11 weeks the heart had stopped at 9.5 - we were devastated). I'm going to try again - probably one last time -but am afraid if this is the issue it may be a failed attempt again - I'm so afraid. It's like there is a huge part of me that wants it to be this, because I finally have the answer, but then the other half of me wants so badly for it to be something else.
  7. ***** thank you!! the one thing i remember reading about the duodenum is the type of pain - which is that it comes in waves - I think that was with an ulcer, That is exactly what happens when I have those attacks. something about the duodenom releasing foods or foods being released into it. i researched that last year and had a strong suspicion thats what it was. I still have that - along with Gas, and this the first time I came across SIBO - and I seem to have a large number of the symptoms - and possibly Celiac too but I need to find out. I am so angry my doctor never tested for this. Or even suggested it. One endoscopy and I think he was looking for ulcers, but - I am not sure he even checked the duodenum, so what was the point? I was under, why not go the extra step and look there? Now I have to potentially face another procedure becuase he didn't do that - and it makes me mad. I am sure it won't be cheap, and .. UGH. why not just check for that stuff while the patient is already on the table. My personal opinion is that the Dr is overbooked and therefore just kind of whips through his patients. Case in point - it took like 2 weeks ore more if I remember correctly - to even get the results of my endoscope. ANd when I called on Monday to ask if I had been tested for Celiac or SIBO - or if he DOES those tests, he was out of the office, and I called Tuesday - he hadn't seen the message yet. I called FRIDAY and still no update (REALLY?) They called me back late friday to say he doesn't test for those two things. WHAT A WASTE!
  8. Just trying to determine - from what I was reading - the duodenum has no nerves so I shouldh't have pain there, but that is where mine seems to be. Where is the pain typically located? THANK YOU!
  9. I'm going to try to summarize this to keep ti short - please bear with me. I haven't had issues consistently for my entire life, but did, as I was gowing up, have a few instances of diagnosed 'COLITIS' Nothing really was thought about that - and maybe it's normal - I went to the doctor less than 5 times i think forthis particular thing up until I was about 18, but thought I would mention it. Fast forwad to last year. Severe stomach pains - double you over type pains - but no diarrhea or constipation, just felt like I was hit in the gut with a baseball bat, and I would walk hunched over for a few hours until it would pass. This was an off and on thing for a few weeks - but each boutonly lasted a few hours. I saw a surgeon and a gastroenteroligist, and neither of them really did much. I had an endoscope, but aside from finding polyps in my stomach (not colon) and a very inflamed stomach, nothing. Dr. prescribed Hycosomine, which I took and hated the side effects - for a few days as that is all I could tolerate. I think it helped at the time (it was for stomach spasms) - but I just am not sure that is my real issue. I do notice spasm-y type feelings, but it doesn't seem a cause of the issue so much as a side effect. Now fast forward to about 3 weeks ago. I had found out I had miscarried again - this is my 3 rd time - and ended up having a D&C, and kind of burying my grief in food. Junk food. Fast food. yuck. After a few beef sticks one day, I noticed my stomach was hurting. I didn't pay much attention, and can't tell you what I ate after that, but the stomach pain progressed and became nearly unbearable. I ended up taking pain killers for 4 days because I couldn't move without being in signficant pain. It felt like the pain was moving downward - albeit slowly, and moved gradually from my stomach area, down to a few inches above my belly button. This is where the pain centered last year too. The pain seems to settle right above the belly button and stay there. no matter what - ti's ALWAYS tender there. The tenderness is in varying degrees - can be just if you press on it, or have you doubled over in tears. All this said - i don't have diarrhea or constipation as a rule. I had one day of diarrhea in 3 weeks, and maybe 2-3 of constipation but I think the latter was because I was eating NO fiber with the stomach pain because I didn't want to aggravate it. One of the 'attacks' or episodes hit the hardest, when I thought I was getting better, and was HUNGRY (after not eating much with the pain) - and sat down to 2 bowls of generic 'TRIX' cereal with almond milk. about 30 to 60 minutes later, I was a mess. Crying and doubled over, and my 5 year old went running crying to my husband, scared to death. So - researching my fool head off - I am beginning to think I have SIBO - and or possibly Celiac - but I don't have the Diarrhea or Constipation issues. So I just don't know. I also am not losing weight. I am frustrated with my GASTRO because he didn't test for either ofr these and I would think ith my symptoms he should have. I also have noticed lately (though this is probably unrelated) that my fingers have been very itchy - especially after I have them in cold water. That seems like mild allergy thing, but it must be food related as nothing soap wise has changed. Anyone able to help at all with this? Since I dont' have the diarrhea or constipation - am I way off base?mayb Maybe it is food allergies causing it - I am just so lost