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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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CDFAMILY last won the day on March 15 2010

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  1. Hi Peacequeen, You sound a lot like me. I was dx with MG about a year before I was dx with Celiac Disease. I had many neurological problems that mimicked MG ALS MS and Parkinsons. I first started with Low white counts (Leucopenia) then ITP (Low Platelets). Then I was dxd with Fibromyalgia. These diagnoses stayed around for 14 years before things went downhill. In about 2002 I mentioned having more gassy problems and had tried all kinds of beano type things. My doctor said there was nothing she could do if they didnt work. Then I started going 3 or 4 times a day and then having emergencies but thinking this was because of all the childbirth rips. Then double vision started in 2003 and my body just started to fall apart. I had muscle wasting, extreme fatigue, serious brain fog, major weakness, high blood pressure and heart rate caused by autonomic issues all kinds of different neuropathies. I then was dx with ocular MG although I had more trouble with body weakness. After being dx I did find a diet on the internet that says it can possibly cure MG or at least make it better. I copied it and filed it. Meanwhile someone told me to look into Celiac. I did research and found and I should have been tested years ago since I have 2 brothers with type one diabetes. All my blood work came back very positive except for Gliadin IgG and Ttg IgG. (I am thinking I am possibly IgG deficient). My biopsy showed scallops and blunting but not total atrophy even though I had a positive EMA test!(A year before the celiac blood tests,I was dx with b12 deficiency and took mega B12 and Bcomplex plus folic acid and I have a theory that this helps repair the intestines) I started the diet but made the mistake of eating a lot of the processed gluten free food at first. Finally I smartened up and got rid of the processed food, dairy and sugar and eat mostly paleo and finally feel better. I have just some minor weakness left but rarely have a droopy face anymore. So, looking back at the diet for MG I found on the internet, well surprise, surprise it is basically a gluten free diet!! So, I would not go gluten free until tested. Go to the doctor armed with the correct blood tests you need. Ask to see the test order so you know what they are testing. You do not need to go to a gastro for this. Your regular MD or neurologist should be able to run the tests for you. But dont be surprised if your neuro is not up with Celiac and Autoimmune
  2. Hi, what you are experiencing is mild neuropathy. My whole family would complain about this. You might check your B vitamins especially B12. Our family takes a B50 complex and B12 sublingual 2-5,000 mcg 3 to 4 times a week. We do not experience this problem anymore.
  3. Interesting, and then if positive do they give you nutritional advice or drugs?
  4. I have not had an SIBO test what do they do? Is it a breath test?
  5. Oh this makes my blood boil! I am not sure but if he took biopsies for H Pylori then could he not go back and test those same biopsies for Celiac? I would demand he does because that is what YOU thought you were going in to be tested for. If he refuses maybe you should refuse to pay him. I am not sure this is great advice but it sure would be nice to start making doctors responsible for their actions and incompetence. Maybe write to the doctors at Columbia U Hospital and see if they would check the biopsies for a second opinion. If your doc knew this was going to happen, he might just change his mind on checking for Celiac.
  6. Thanks for mentioning your tests as it is good to know what the Great doctors at Columbia are testing for. The Vitamin O25 is probabably your vitamin D3 test Vitamin 25(OH)D which is an important test that so many are deficient in and so easy to fix with a supplement. Let us know your tests results and how you are doing.
  7. My husband and I must do a couple of trade shows a year so we have no choice but to eat out. We bring our own breakfast and lunch but dinner with employees and customers is a must. As careful as we are, there are times when we have been glutened and sometimes at the most upscale restaurants. After having a couple of difficult times, we found that taking a gluten enzme, gluten ease and a probiotic every morning, along with our omega 3, vitamin d3, B complex, b12, zinc and a few others keeps us from getting too glutened. It mights still affect my/our brain with brain fog but the stomach doesn't seem to bother us as much. Hope this helps.
  8. Diane, Tarnalberry, Txplowgirl, My neuro also never heard that Celiac Disease could cause neurological symptoms and also can be related to strokes according to Dr. Green. I was at a Celiac conference a few years ago and asked this question already knowing that Dr. Green was researching this. The neuro speaking said he did not know of any connection. Luckily Dr. Green was also a speaker and discussed the connection. Why don't doctors keep up with this information. Our conference was a good example. It was held in a medical college. All doctors and students were invited. No one came from the college. Many nurses came. Many patients came. Doctors say they don't have time. Unless they have a patient like me with the time and interest to educated them, they continue to be in the dark. What other symptoms does your sister have? Your sister could go on the Pubmed site and search her symptom and celiac disease and maybe come up with a few articles that would show her doctor that there is a connection. I would also recommend her to request tests that might show malabsorption such as tests for B vitamins especially B12, MMA, Homocysteine and folic acid, also K and D3 along with zinc and selenium and ferritin, iron, saturation and TIBC. This are just some I have had done and have helped guide me in what vitamin supplements I needed. Vitamin D3 as I mentioned in my signature is what really helped me recover from the many symptoms I had. A Cleveland Clinic doctor recommended 8,000 IU of vitamin D3 daily and that is what started my road to recovery. The Gluten free diet relieved so much inflammation in my body but having had this disease so long before being diagnose, I needed help and vitamin D3 is what finally made a big difference in my recovery. I hope everyone with Fibro requests their D3 to be checked and make sure you get the results as you want your numbers in the very high normal levels for best results. I think they are recommending around 60+ng/mL. They say now that having good levels can help prevent colds, flu and cancers. I know that since I started taking mega doses, I have not been sick and I have low WBC and used to be sick all the time!
  9. Diane, Hi, I have talked to many people who were dx with fibro first and later Celiac Disease. I was dx with fibromyalgia in 1995. In 2005 I was dx with Celiac Disease. All the severe symptoms of Fibromyalgia are gone. I do have a few tender spots but not nearly as tender. I do believe fibromyalgia is related to the gut. I also had a neighbor who was dx with fibro and went gluten free without a Celiac dx and he also has experienced the same great results. Why a doctor would not test for Celiac Disease when it is in the family and instead settle for a Fibromyalgia dx is beyond me???? I would highly recommend your sister get tested before she does a trial of gluten-free. If I had discovered my Celiac 10 years earlier I would have avoided 10 years of pain and fatigue not to mention the neurological complications that developed because of a late diagnosis. Being on the diet is really quite simple...you just eat the way we are supposed to eat...all natural. I really wish someone would have known about Celiac Disease in 1995! Good luck and I hope your sister listens to her very smart sibling.
  10. Celiac Testing

    Hi Elizabeth, My daughter Elizabeth also has Celiac and attends UA. Please ask to talk to the head of the Campus Food Service. Discuss with them your needs. Tell them to call Akron U if they have any questions as I am sure they would be glad to help. We did this at UA 3 years ago and you would not believe how wonderful they have been. She just has to call ahead 1 hour to let them know she is coming and they prepare her many wonderful gluten free meals. They have special pans and special foods set aside just for her and anyone else that requests gluten-free. If they don't want to help, you might consider going to UA instead if that is an option. It is only a 15 minute difference in driving. If you have been gluten free for 7 years, you might have a problem getting a positive test so I would also ask for them to also do the HLA DNA test to see if you have DQ2 or DQ8 or both. Remember, if the tests are negative and you have the HLA DQ2 or DQ8, then they can not say you do not have Celiac, they can only say you are not testing positive at the time which of course is because you have been gluten free for a long time. I would be careful if they want you to do a challenge...my daughter did this and became severely anemic with all levels falling dangerously low. Within a year she was also diagnosed with Graves Disease. I think challenges are a form of medical malpractice if you ask me. You just should not make someone sicker on purpose. Good Luck
  11. Total Serum Iga?

    Thanks Peter, I was hoping someone would explain the IgA deficiency a little better.
  12. Total Serum Iga?

    Dear Veggiemomma, Wow, I am sorry to say this doctor is not very informed about Celiac Disease. He sounds like an old school doctor who keeps rereading his outdated text books. IgA does not rule in or rule out Celiac Disease. It is only helpful if you are IgA deficient, then, if he knew what he was talking about, he would then know you need to have the TtG IgG test done because the TtG IgA would probably be also low and invalid with the IgA deficiency. With a positive EMA and TtG your chances of being Celiac are 99% and in my eyes 100%. What your doctor also does not know because he is not reading the right websites, is that more recently, they are diagnosing more overweight people than underweight people with Celiac Disease. And the symptoms are not the typical ones he learned in med school. And were he gets the idea that this is a sexy disease...Let's get real....we are talking bloating, gas, ataxia, neuro symptoms, migraines....there is nothing and let me repeat myself, Nothing sexy about any of this. This was published in Pubmed: You might want to make a copy of this and take it to the doctor. But, I will add that many Gastro's will still insist on a Biopsy to give a gold star Celiac dx but anymore many people do not care about the biopsy. I am not sure I would even trust this doctor to do a biopsy because they need to be done a specific way and need several biopsies. Good Luck
  13. Hi Jennifer, What a great sister you are! High Blood Pressure
  14. I agree with Gemini about the inflammation already being present and that a smart doctor would already have diagnosed this as Celiac Disease especially after reading what Dr. Guandalini says that the vast majority of type 1 diabetes DO NOT HAVE severe changes to their intestines. http://www.dlife.com/dLife/do/ShowContent/inspiration_expert_advice/expert_columns/Lara_Rondinelli/celiac-disease-test.html And yes emergency trips to the bathroom are a sign of Celiac. I had this problem and it is not caused by waiting. I do not have this problem anymore. Also, 20+ minutes in the bathroom would be considered a constipation problem in my humble opinion. So with these couple of symptoms and an inflamed intestine, with very high TtG
  15. 1. How old is your son? 2. Does he have any symptoms you would not think are Celiac, like low endurance, fatigues easily, problems concentrating, behavior problems, easily irritated, whiney, quick to get a stitch in his side while running, easy to get sick with infections, headaches, complains of aches or knee pain, sinus problems, any numbness like fingers tingling or body parts easily fall asleep. Is he a big eater or a picky eater? Does he favor one food more than another? Hard time regulating insulin? Does he sleep more than other kids? 3. Have the doctors done all the vitamin and other tests that would point to malabsorption??? Such as checking vitamin E, K, B12, all B