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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. Edited to add....I shouldn't have said Anemic but I can't edit the post topic . I haven't been told I am Anemic...just have low iron. Hi, It's been so long since I've visited here. Life's been busy. I have been gluten free since last December. I had my biopsy and bloodtest and both negative for celiac. I'm not concerned about that because I do know gluten bothers me. Last December my ferritin was 9 (everything else looked normal) and if I hadn't asked about if I should do anything about it the dr wouldn't have even thought twice about it. She told me to take a multivitamin with iron. Well, that made me nauseous so I just stopped taking it. Over the past year I felt my diet has been healthy. I've been getting more headaches again and my hair seemed to be everywhere (falliing out) and I just haven't had much modivation or energy. So I went to the dr's last week to check my iron again. This time my ferritin is 8 and my iron saturation numbers are low now. Last year my iron was 128 (normal value is 50-170) last week it was 40. My iron saturation last year was 33% (normal range is 15-50) last week it was 10. So this could be why I'm feeling the way I do. The dr put me on iron supplements and wants to retest in a month. So my question is. The one thing I haven't looked into with going gluten free is my makeup. My friend told me to get rid of it all and only go with gluten free. Would this really make that much of a difference? I just can't see that affecting my iron...but could it? Or is it because I'm not eating all the fortified breads and cereals anymore?
  2. The dietitian sent me a message after reading up on EE that she doesn't think that my daughter will be safe eating in the cafeteria at the present time. I suspected it but it's hard. Only thing available as far as apartments on campus is a room available in a 3 or 4 bedroom apartment with upper classmen. Even that I would think would be difficult because she would have to use only her stuff in the kitchen and make sure nobody else does...and living in a kitchen that isn't allergy friendly would be hard. I might be looking at setting her up in an apartment off campus. Or she does what she can to survive the semester where she's at and then next year be put on the list for an apartment on campus.
  3. Thanks. Yep....I'm not sure she'll be safe eating in the cafeteria. She just won't have that many options. I hope the dietitian can work with her this week and come up with a plan. Otherwise...we'll have to push for some changes. I stopped at the grocery store with her before dropping her off. Anything gluten free either had soy or sunflower oil...I swear. We couldn't find any snacky type foods for her to have. We'll figure it out. It'll just be a bit difficult at first. I don't know how strict she needs to be either. The allergist wanted her to avoid wheat, soy and sunflower....and not worry so much about the others. I'm in the process of creating a binder for her of recipes and a list of safe foods. That way when she's on her own it'll be a good resource. I'm so sad for her. It just seems like such a difficult task ahead of herself
  4. Thanks for the replies. I did see that there is a proven link to celiac disease. One thing...being positive to wheat, barley and rye on the allergy testing at least solidifies the fact she needs to stay away from those. I hadn't thought about a 504...I will have to look into that. I had a great talk with the college dietitian today. They are working diligently to come up with a database of what's in every food they offer in their cafeteria. So when a student comes in and has to stay away from certain things they can type that in and a list of safe foods will be provided. She said they have already listed over 3000 items ...so it's a work very much in progress...and hopes to be available soon. Next week she will meet with the dietitian and go over what she needs to steer clear of. I know the dietitian said that if it becomes apparent that she cannot safely eat at the college cafeteria they'll make arrangements for her to get off the meal plan and into an apartment. Now I really have to think about this...you are not the first person to say she may not be safe no matter what eating in the cafeteria...and that we should push for her to make other arrangements right away.
  5. She had her biopsy last month and it was negative. However she was diagnosed with eosiniphilic esophagitus. I went ahead and had her get allergy testing yesterday and she was positive to wheat, barley and rye...along with peanuts, hazelnuts, cashews, corn, soy, sunflower and a few others. So since she knows "gluten" has bothered her she will be staying away from that. She's also had a reaction to nutella the last two times she's ingested it...she's staying away from it. The allergist figured it would be best to stay away from wheat, soy and sunflower (thinking those must have been the highest on her reaction). At least she has a medical reason to stay away from those things now. I will be calling her college to see if we can schedule a dietitian appointment to make sure she is finding foods in the cafeteria that she can eat. If she has a hard time we will push for her to get out of the meal plan and possibly dorm for next year. Still happy our household is gluten free now. My other kids and myself are feeling so much better despite the negative biopsies. edited to to add...I meant to post this in the kids section...but oh well.
  6. I hope she remains gluten free. How old is she? My husband gave up gluten just over 2 yrs ago. It took 5-6 months for the diarrhea to disappear but he was feeling so much better almost immediately despite the D while his intestines healed. He too had episodes of passing out and worried it would happen while out of the house. The passing out from intestine cramping scared me too! Once he got sick on the way north for my father's funeral. We had just switched driving because he was feeling so ill...and as I was driving he passed out in the passenger seat...kids saw it all and it was not pretty. I am so thankful he has not had one passing out incident since going gluten free! Good luck. You are correct...gluten is in so many things you wouldn't ever think of...but once you find that out and find the products that don't contain gluten...you'll be doing just fine. Oh, and my dh has not been tested for anything...he hates doctors.
  7. So sorry you are dealing with crappy doctors. I am sure I am now labeled the WACKADOO in our peds' office as well as the whole clinic in our city as I was refused a second opinion within the clinic even though it would have been another office across town. The GI dr within the same clinic denied us as well saying he wouldn't take her because she's 17. Each time I called a place they'd open her file and read what the ped said...which I really don't know what she said...just know the last thing she wrote was "possible pulled muscle" (for my daughter who has had 3 1/2 wks of lower quadrant pain). I finally called a provider out of town 45 minutes away and they got her an appointment pretty quickly. Anyway, my 3 other kids just had negative biopsies for celiac...yet I know gluten bothers them. I had one son test positive on one of the celiac blood tests so something is going on. His muscle pain went away within 2 wks of a gluten free diet and came back horribly when gluten was added back in. After the negative biopsies the dr prescribed all 3 kids prevacid. ARgh. I can see why in the case of my daughter who has a hiatal hernia and eosipholinic esophogitis (sp??)...her esophagus was quite extensively inflamed. We are all going gluten free and I hope the prevacid is not needed. I know that my husband's severe indigestion went away immediately upon starting his gluten free diet. So I am pretty sure my kids will be the same. Good luck with your daughter. Do you think you could get a different GI doctor even if you have to go to a different town? You might feel better knowing they are starting fresh and not getting an earful from other doctors that have seen your daughter. CC
  8. I guess I knew we'd still do the gluten free house no matter what. I know each of us feels better gluten free so we'll just move on. My 12 yr old's esophagus was slightly irritated...but I don't think the nurse mentioned the dr wanting to do anything for that. My 10 yr old looked clear but because he has so many stomach complaints the dr prescribed an antacid. My 19 yr old daughter had pretty extensive Eosinophilic esophagitis. So the biopsy confirmed what the irritation the dr saw was. She also has a hiatal hernia which I'm sure doesn't help that either. The EE makes us realize what she has had problems with over the past 7-8 yrs with reactions to things. Her chest used to hurt so extremely bad I'd almost be bringing her to the ER. So the plan with her is to eat gluten free while home on Winter break from her college. Get her healthy and then hope that she can make some good choices with her food when she goes back. I think I will call up the college and have her meet with the nutrionist there...as I think they did have someone available. She's been very fatigued so my worry is she'll get herself feeling good again and because she doesn't have that celiac diagnosis the college won't do anything to help her with her eating plan. Ah..I know nobody wants the diagnosis of celiac...but it would explain so much. My 12 yr old son's blood work was positive and his muscle pain went away gluten free so something must be going on. My husband has to avoid gluten or he gets severely ill. The dr recommended genetic testing now. Is there any difference between getting the genetic blood test vs the swab of the mouth. I think our insurance pays 50% for a genetic blood test which would put us having to pay about $550...vs doing it on our own I think it was $300 for the saliva test through promitheus labs.
  9. Was he just having a routine blood test then? Interesting they did an IGA for that. Is he being seen for other nonGI issues? My son who tested positive on blood work was not having any GI issues. His complaint was muscle pain..which resolved on a gluten free diet and came back stronger when reintroducing gluten for the biopsy. His pediatrician didn't want to do the blood test telling me he has not been having any stomach problems or GI problems so that was her reasons for not wanting to test for it. I knew better though and knew that celiac doesn't have to present with any GI issues what so ever...and can present with just about anything. When the test came back positive after her reluctance to test she didn't even want to see us and just referred us to a GI.
  10. I am very interested to know what symptoms he was having that the dr's chose to do a celiac panel. Most doctors don't just test for celiac unless there are symptoms or if another family member has it. Kudos to your doctor for doing the test and possibly getting your son healthy before too much damage is done. Best of luck next week with the GI. 3 of my kids just had endoscopies done recently and we are waiting for the results. The kids handled the procedure really well.
  11. Do you know if the gliadin IgG and IgA were the deamidated gliadin test? If it were then that's more specific and indicative of celiac. My son was high positive on the deamidated gliadin IgG and everything else was negative. So he was considered "weak positive." He had his endoscopy on friday and we are still awaiting the results. From everything I've read though it seems and have heard having that deamidated gliadin IgG positive is quite specific for celiac. We did do a trial of gluten free after the blood test and my son's symptoms of muscle pain and canker sores went away. Came roaring back when introducing it back into his diet for 3 months to get the endoscopy. Good luck!
  12. Ravenwood, I considered that because with her dad the first thing to improve going gluten free was his severe indigestion. The only challenge she faces is eating in her college cafeteria. If her biopsy does not confirm celiac the college won't have too provide to much in the way of helping her with her gluten free diet. It'll make me nervous sending her back to her dorm room!
  13. That's what it appears...by doing some reading throughout the last couple of years I have seen a lot of people talk about it on the forum. Must be. Anxious for the tests to all come back. Grrr...Nexium was not covered by our insurance. Have to wait for the pharmacy to call the dr tomorrow and see if there is an equivalent replacement.
  14. She is 19 but the celiac specialist pediatric gi dr my boys see said he would do her endoscopy as well. So it was done this afternoon. We have to wait a week for the results of the biopsies. However, he saw "extensive irritation to her esophagus" and she has a hiatal hernia. He said the esophagus irritation is often seen in someone with food allergies. Anyway, he put her on nexium. I've often noticed here on the forum people talking about esophagus disorders...is this something common with celiac. I can tell you that my husband had severe acid indigestion and it was the first symptom to go away after giving up gluten 2 yrs ago. His diarrhea took 5 to 6 months to clear completely though.
  15. Thanks. Good to know. No fever or anything else so I think I'll just keep an eye on it. Sounds like you had a similar experience. Yes...he said it's a different kind of pain...never had it before. Merry Christmas to you too!