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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 debimashni

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  1. Varicose Veins

    None of my children developed the KF rings (copper rings in the eyes). They use several tests to diagnose Wilsons including ceruloplasmin level, serum copper, 24hr urine copper and liver biopsy. My daughter had elevated liver enzymes and elevated bilirubin (20x normal) and was very yellow before she was diagnosed. We were very lucky that we live by the University of Michigan Hospital. They were doing clinical studies on an experimental drug called TM (I don't know the generic name), that basically saved her life. She was in liver failure, her blood wouldn't clot and she rarely woke up. She was in the hospital for 2 1/2 months. She was waiting for a liver transplant, when the new meds started chelating the copper out of her liver. She still has cirrhosis....but she takes good care of herself. She now takes a medication 3x/day called Galzin (which is basically Zinc). Three of the patients (of about 15) who were in the drug study at the same time she was, have died because they didn't take their medication. That was the worst time of my life. If you have any more questions, feel free to email me at debismashni@aol.com.
  2. Varicose Veins

    Two of my children have Wilson's Disease, and the rest carry the disease (I am also a carrier). It is a auto recessive genetic disease. My oldest daughter almost died from it...she went into liver failure. Wilsons disease requires treatment, it is fatal without treatment. Sometimes carriers of the Wilson's gene have slightly elevated copper levels, althought not enough to require treatment. My son with Celiac disease sometimes has elevated urine copper levels. If anyone else has any info on Celiac and Wilsons Disease, I would be interested in reading it.
  3. Bechet's Disease

    I was diagnosed with Behcet's Disease in 2001. I was also diagnosed with Celiac Disease in 2003 and autoimmune hepatitis last November. I have Remicade IV treatments every 6 weeks...it helps with the pain, but my quality of life sure isn't what it used to be. Feel free to email me, if you would like more info. debismashni@aol.com
  4. I bought a deep fryer because my son was still sneaking out to KFC with his friends. He loves the gluten-free fried chicken nuggets that I make for him now. I soak the chicken in a mixture of buttermilk and beaten egg for an hour. Then I shake the nuggets in a mixture of cornmeal, sweet rice flour, salt, pepper and paprika. I put them in the deep fryer for about 7 or 8 mins. and drain on paper towels.
  5. Muscle Pain?

    I also have muscle and bone pain....sometimes it is so bad it wakes me up at night. I also have Behcet's Disease, so I am not sure if it is the Celiac or the Behcet's. We have a hot tub that I sometimes use for the muscle pain...and if it is really bad, I sometimes take prednisone for a few days.
  6. I have been taking prednisone on an "as needed" basis for the flares I experience with Behcet's disease (I also take prograf daily and enbrel injections 2x/week. When I was diagnosed with celiac last spring, my biopsy showed "partially treated" celiac sprue, which I suspect was related to taking prednisone. As for taking prednisone, it works awesome, but has terrible side effects. I take it only when I my Behcets flares are so bad I can't stand it anymore. I usually take 50mg x 3 days, or I'll do a 2 week taper. Last year I took it everyday and I gained 30 lbs (I finally have lost most of it), I had the "moon face", terrible mood swings, etc. It is such a tough decision, because my physical symptoms are so much better on prednisone, but mentally, it isn't worth it. If someone could develop a steriod without the side effects, it would be a gold mine!!! If you have to take it, try to use the lowest dose possible. Some people get away with taking it every other day with minimal side effects. If you are put on it, and after you have some improvement, maybe you could get by with taking a short "blast of steriods" like I do, when your symptoms are bad. You are welcome to email me if you have any questions. Deb Mashni
  7. Family Members?

    Even though only two of us have celiac, we have very few gluten containing foods in our household. Anything that is baked here is gluten-free, and everybody here seems to enjoy the gluten free sweets. We didn't plan it that way, it just happened. Everyone just feels that they are helping us out by keeping gluten out of our household. Now when we go out to eat....it is a different story. The non celiacs make gluttons of themselve on gluten!
  8. That Zombie Feeling

    I have both celiac disease and behcet's disease, which is a rare autoimmune vascular disease that causes extreme fatigue, along with some other nasty problems. I guess I have a double whammy of that zombie feeling. Anyways, I wanted to mention that my rheumatologist who treats the behcets prescibed Ritalin LA for me for on the days that I have a hard time getting out of bed. It does help me some, at least I have a little more energy. I know that some people might think that taking Ritalin for fatigue related to disease is foolish, but there are many patients with MS and other such diseases that are using it to decrease fatigue and improve their quality of life. There is also another medication, called Provigil(that was originally developed for narcolepsy), that is supposed to have less potential for addiction. Hopefully, most people on here are able to control their fatigue by remaining on a gluten-free diet, but I just wanted to mention it in case there is anyone else that has other autoimmune conditions and experiences extreme fatigue. My craziest restaurant gluten story is when I told the waiter I couldn't any of the bread they brought to the table because it had wheat in it, so they brought me some white bread!
  9. School Harrassing 17 Year Old Celiac

    Thank you Richard for the delphi forums website. I read many of the school related postings and found this webpage that has form letters for various school staff. This is the link if anyone else needs it. http://www.csaceliacs.org/CelKidsSchool.php I tried to talk Omar into attending a different school district this year, but he has been with the same group of kids since kindergarten and didn't want to leave. I have 5 daughters who have also graduated from this school....and have never had any problems with the school until last year. Before we knew what was wrong with Omar, he was having much difficulty with math. We requested additional time to complete a class, but it was denied ( I was told that he is lazy and he was told that he is NOTHING LIKE HIS 4.0 gpa sisters.) Anyways, after fighting with the principal (he has only been there 2 years and has been pulled in front of our school board by several parents), I just paid for Omar to make-up a class by taking an online class through our state virtual high school. I was really looking forward to having the youngest of my 6 kids enjoy his last year of high school, but I can hardly wait until this year is over.
  10. School Harrassing 17 Year Old Celiac

    Thank you everyone for your responses. Omar's doctor is sending another letter to the school today and I am also emailing an article on celiac, along with a brief explanation of Omar's symptoms to each of his teachers, asking them to please be patient and understanding with him. I am also asking that a note be left for all subsitute teachers so that Omar's frequent use of the bathroom isn't a class discussion again. I approached the school dietician last spring about gluten free school lunches for Omar, but she hadn't heard of celiac disease. I decided at that time that it would be better for me to provide all lunches. I neglected to mention in my earlier posting that I have celiac also. I was diagnosed last March and it was then that Omar's doctors' were finally able to figure out what was wrong with him. I have adjusted to a gluten free diet easier than Omar has, although I think that I am finally getting through to him. I have been educating his friends also, and they try to make a pitt stop at Taco Bell when they are hanging out. I make all of our breads, cookies, pizzas, even fried chicken from scratch...the problem occurs when I am ill (I also have Behcet's Disease) and Omar has to fend for himself. If the school gives us anymore trouble after this, I will talk to the superintendent and ask for his support in this. I feel that the school shouldn't treat Omar's illness any different than any other chronic illness. I have no problem hiring an attorney if that is what it will take to make sure that Omar is treated fairly. I am hoping that another attempt at educating the staff with be enough..but only time will tell.
  11. I am so frustrated with my son's school administrators' ignorance and lack of interest in his diagnosis of celiac disease. My 17 year old son, Omar, was diagnosed last spring with celiac disease after many years of illness including diarrhea, fatique, elevated liver enzymes and various other abnormal lab tests. Since he doesn't look like what the school considers a celiac patient to look like (i.e. emanciated), they don't believe he is really ill. He also has a difficult time following a gluten free diet, so the school administrators feel he brings this on himself. Of course the school on average only has a gluten-free lunch available approximately once every 3 weeks, so they are clueless about the celiac diet anyways. Omar is now in his senior year of high school. He has reached his 10th absence already this year in some on his classes, so I now have to provide a doctor's note for each absence. His GI doctor sent a letter last year that stated his diagnosis of celiac disease and that they should expect that he will have frequent absences and will be late to school on occasion because of this. If he uses the bathroom between classes, he receives a tardy. If he isn't "finished" in the bathroom and in class within 3 minutes after the bell rings, he is given an unexcused absence. One teacher made a comment in front of the class last week about him always being in the bathroom and another student told the teacher to lay off him as he has a disease...talk about IGNORANT! I am so concerned that the school will screw him over and he won't graduate. Our principal already doesn't like him...he actually told me that Omar is lazy because he misses so much school and doesn't always complete his homework.....this principal doesn't agree that Celiac can cause fatique (even though Omar's labs show anemia and virtually non existant levels of ferriten in his body). The principal thinks that since Omar's twin sisters were valdictorian of their class that Omar should do as well.....celiac has nothing to do with it! Does anyone know if the American with Disabilities Act covers Celiac? We need some assistance with this school. There are only 380 students in Omar's entire high school...its not like he is just a number there!!!
  12. I have had very good luck making gluten free bread with a breadmaker. I purchased a Breadman Ultimate that has several options on it, including a dough only cycle that I use for pizza dough and buns. As far as recipes, I use several different recipes from the Gluten-free Gourmet cookbooks, Gluten Free 101 and the Gluten Free Kitchen. My family prefers the recipes that either have instant mashed potato buds or grated raw potates. As far as the flour, I usually use a mixture of white rice, tapioca starch and potato starch (from the Gluten-Free Gourmet cookbook). I have also used recipes that call for brown rice, sorgum, buckwheat and montina flours. I have found that adding 1 tsp of unsweetened plain gelatin (even if the recipe doesn't call for it), helps prevent the bread from crumbling. I don't think that I can copy the recipes from the cookbooks on here because of copywrite laws, but if you want to email me I can give you more info. debismashni@aol.com
  13. I was actually diagnosed with Celiac Disease after I was admitted to the hospital with liver enzymes (ALT & AST) in the 800s....normal is under 45. My doctors are not sure if the elevation was from the Celiac Disease, or caused by one of the immunosuppressant meds I take for Behcet's Disease (another autoimmune disease), or even from a virus. Luckily, my husband is a nurse practitioner so he draws my labs on a regular basis. I also have urine dipsticks that check for bilirubin in my urine that I use if I notice my urine is dark. Last time I used one and found moderate levels of bilirubin, my husband checked my labs and sure enough, my liver enzymes were elevated again. I just switched to a new immunosuppressant drug to see if my meds caused the problem.