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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? - 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

ravenwoodglass

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  1. If you have positive blood work you need the biopsy BEFORE you begin the diet. Otherwise you will need a gluten challenge for up to 2 months or the biopsy will likely be a false negative. there are no blood tests for gluten sensitivity. Only ones for Celiac. If you blood tests were positive you are almost for sure celiac. The choice whether to just go gluten free and stay that way strictly for life or keep on gluten and go for the biopsy is up to you.
  2. I let the pharmacy know I am celiac and need gluten free meds. The pharmacist checks. Until I found a pharmacy that I trusted I would call the maker. Most drug companies numbers can be found on line. Some companies will say no gluten ingredients but no quarentee. That is a CYA statement. When I called companies I said I had a wheat allergy as rye and barley aren't used in meds. I felt the reps would take me more seriously that way. Meds are not returnable so if you want to check get the name of the maker, med and dosage and check before you pick them up. Very few meds have gluten.
  3. Bloody Diarrhea When Glutened

    If you are passing more than a couple drops of blood you need to find another GI doctor for a second opinion. If your present doctor gets offended then you need to drop him like a hot rock. If you can easily get to the Mayo clinic then go there. If not then find another locally. Is it possible you are continually reglutening yourself? There is a lot to the gluten-free lifestyle that involves more than just checking to make sure the foods are gluten free. How it is prepared is also important and well as stuff like not kissing gluten eaters without them brushing their teeth first, using gluten containly lotions on your hands and then eating finger foods and much more. By the way an upper scope is called an endoscopy. You had both an endoscopy and a colonoscopy at diaagnosis. Do get your medical records also with copies of labs and endo/colonoscope results.
  4. How Soon After Eating Gluten Do You Have Breakouts?

    CC is cross contamination. An example would be items that are gluten free by ingredients but made in a factory that has shared lines. Using a colander for straining your gluten free pasta that was used for wheat pasta is another example as is using a toaster that has been used for wheat bread (you need one that is new and will never be used for gluten bread). Also cutting boards and wooden utensils or scratched pans will also CC you. I didn't have to avoid stuff like processed gluten free breads or pastries etc but some folks need to do so. Start with shopping the outside of the store and go for mostly unprocessed foods in the begining. That will lessen the chance for CC and speed healing. Be sure to read the Newbie 101 thread at the top of the Coping section it will have a lot of valuable info for you. You may also want to start a new thread in the post diagnosis section to ask about your thyroid meds to be sure they are gluten free. Make sure your pharmacist knows you are celiac so they will check all scripts for safety. If you live in an area that has a Wegmans store do your shopping there. The family that owns them has celiacs in the family. I have never been CC'd by any of their items marked with a circle G.
  5. How Soon After Eating Gluten Do You Have Breakouts?

    I don't know much about thyroid issues. I simply avoided iodized salt and iodine in my supplements. If the thyroid issues impact your need for iodine do talk to your doctor before stopping it. Do also talk to your doctor about stopping the dapsone. You may need to taper the dosage so the DH doesn't flare up again but I am not sure about that. I can identify with the wanting to get off of the meds. For a bit after diagnosis when I felt sorry for myself because I couldn't have phyllo type doughs anymore I would go into my closet and drag out the tackle box full of all the meds I didn't need to take anymore. The trade off for good health was sooo worth the adjustment to a gluten free life. You should check your toiletries for gluten ingredients also.
  6. I hope your girls are recovering well. Just a quick note that not all celiacs tolerate oats, even gluten free oats. I am one of them. Do wait until they are well healed from the poisoning before trying the cereal again. If possible have them eat it every day for a week without any other new foods. Celiac reactions can be delayed which can make it confusing when we are trying to figure out what got us.
  7. Bloody Diarrhea When Glutened

    Have you had a colonoscopy? If not it would be a good idea to contact the GI doctor that diagnosed you about the bleeding. You could have something more than celiac going on. I pass blood for a day or two after being glutened but having this going on even when just passing gas and having it last for weeks really needs to be evaluated. Until you can see your doctor make sure you are not taking asprin or any other blood thinning drug or supplement.
  8. How Soon After Eating Gluten Do You Have Breakouts?

    When I was first diagnosed my DH would flare within hours of consumption. Now after being gluten free for many years those blisters are the last thing to show up in my glutened cascade of symptoms. I also now only get a couple small blisters and they heal fairly quickly. I was virtually covered in lesions when I was diagnosed. Do make sure that your doctor is doing frequent liver panels while you are on Dapsone. It is quite a toxic med. I personally chose not to take it and the diet and avoiding obvious sources of iodine cleared me up quite quickly. Do be sure to read the Newbie 101 thread at the top of the Coping section as it will have a lot of good info to keep you safe and healed as quicly as possible.
  9. Liver question

    It would be best, IMHO, to wait until those liver panels are back to normal and your gut has healed. Also be sure to read the Newbie 101 thread at the top if the Coping section, if you haven't already, to learn how to keep yourself as safe as possible. Unfortunately there is more to being gluten free for us Celiac folks than just what we eat.
  10. After Appointment

    It is likely that once you are healed on the gluten-free diet you won't need them any longer. If you do still need digestive enzyme there are some that are over the counter. Right now you have no way of knowing whether it is the steroids, the enzymes or the diet that is the most responsible for your improvement. The steroids will be a short time course I would imagine since they can have some nasty side effects. In addition never feel you have to apologize or that you are being a pest for posting. The purpose of the board is to help folks and you can't get that help without posting. I hope you heal quickly but be patient with your body. It can take a bit of time.
  11. Liver question

    Your doctor is correct. Many folks prediagnosis have wonky liver panels. My doctors always accused me of being an alcholic even though I rarely drank. It wasn't long after I was diagnosed that those liver panels went back to normal. Yours likely will also.
  12. I aimed for a thousand extra calories a day. I used a combo of gluten-free pretzels, raisens and nuts and kept them in a bag with me all day. Whenever I thought of it I would eat a handful till they were gone. I ate them in addition to my regular 3 meals a day which I also tried to make a calorie rich as possible. Don't know if it would work for you but that tactic got me up to my normal weight in about 3 or 4 weeks.
  13. Need Understanding

    With panel results that high you do have celiac. It is good that you are having the biopsy done though so the doctor can monitor the amount of healing if you choose torescope in 6 months to a year. There is a chance that damage is patchy and may be missed on the biopsies. If that is the case don't think you are not celiac. You can start the diet strictly on the day they do the endo you don't need to wait on the results. Some folks can have more than one thing going on and being gluten free isn't going to effect testing for other issues. Do be sure to read the Newbie 101 thread at the top of the coping section. It has a lot of good info and will help you prepare for the change next week.
  14. NSAIDs may contribute to villious blunting but they won't cause celiac blood tests to be positive. If a person has both blunting and positive blood work they have celiac. While it appears that the endo came first Joseph did have a follow up celiac panel run.
  15. I don't have a lot of time this morning but I did locate organizations section on gluten free label regs in Canada. There may be more info on this in that section that may be helpful in knowing why they are making that change. http://www.inspection.gc.ca/food/labelling/food-labelling-for-industry/allergens-and-gluten/gluten-free-claims/eng/1340194596012/1340194681961