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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 marilyn

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  1. ABS, IGA - 8 (negative range = 0 - 19 ABS, IGG -5 (negative range = 0 - 19 ttg, IGG >100 (positive >9) IGA 215 (normal range 70 - 400 A chart I have to figure this out says "possible" Any opinions?
  2. This may seem kind of harsh but considering the consequences I do not think so - maybe in writing if it is difficult to talk to them. But dear M and D, We know you love junior very very much and he loves you too. We know you would never do anything intentional to harm him or make him sick but that is what you will do if he eats anything you give him that contains gluten. Living in a gluten filled world if very difficult to begin with but even more difficult when the people we love do not understand....etc. Unforunately, the consequences to his immediate and long term health is very very serious and if we cannot all get on board and have a committment from you that you will be dilegent and protect him we will not feel comfortable leaving him alone with you. This would make us very sad. Just a crumb may or may not give him diarrhea but can cause damage to his body that you cannot see immediately. I cannot believe any grandparent would intentionally harm - ignorance can be overcome but in the meantime you have to protect him even if it makes you unpopular. There was a woman who was taking her x to court to prevent him from having partial custody because he would not follow a gluten-free diet for the child - I would think "emminent danger" would apply - I would hope it would. Good luck.
  3. A person contacted me who wanted some advice on whether or not to test her 5 year old son after a 7 year old sibling had a genetic test (Entero-stool and cheek swab) that showed celiac disease and gluten sensitivity genes. Her son has some other medical conditions that I do not have specifics on. At a Celiac conference this past year someone in the audiance had this question and the speaker (the director of the research center in Maryland) said that it is illegal for health insurance companies to deny treatment for a genetic condition (under that argument that it is preexisting). So, I think, maybe, she did not want to have the blood screening for her son go through health insurance...I am not sure why...anyway, wondered if anybody with some of the legal knowledge about this could reference an article or point me in some direction so I can give her better information. Marilyn, RD. LD.
  4. I recently put together an educational power point for the community and then offered it to dietitians on a listserve. Someone wrote back the following question and as I did not have an answer to the first part especially (though the symptom of a foggy brain would fit in, I suppose), I thought I would put it out here to see if there was more information for her. ""In your experience can kids with celiac exhibit ADHD-like symptoms such as impulsivity or oppositional behaviors? What age is screening appropriate since there can be false negatives without sufficient antibodies?""
  5. This question came to me after I offered to forward a power point presentation to a group of nutrition professional. "In your experience can kids with celiac exhibit ADHD-like symptoms such as impulsivity or oppositional behaviors? What age is screening appropriate since there can be false negatives without sufficient antibodies? " Wondered if anyone here had any experience, opinions or other references that I could look to. Thanks Marilyn
  6. 1:00 - 2:00 PM Jones Regional Medical Center, 104 Broadway, Anamosa, Iowa. Meets in the Cafeteria 2nd Thursday of the month. Call Marilyn for more information 319 463 6135 ext/ 6353.
  7. Lunch and Learn sponsered by Jones Regional Medical Center and the Jones County Area Celiac Support Group, Lawrence Community Center, Anamosa, Iowa. Marilyn McCall, RD.LD. has dedicated her professional life to educating herself and others about Celiac Disease. Presentation to include current research and information and a Gluten Free FREE boxed lunch. RSVP encouraged to make sure we have enough lunches available. To Register or for more information call: Marilyn - 319 462 - 6135 ext. 6353
  8. Good Questions To Ask Dietician?

    By now you have probably had your visit and I hope it was a successful and benefical one for you. I would be interested in hearing your experience. I am sorry that no one responded to your question which I thought was a very good one. As mentioned here there are some R.D.s more knowledgable and helpful, however, we are all striving to get updated. Support groups and this forum are a wonderful venue for information. There is also a website glutenfreedietitan.com I have not visited but the RD also has celiac disease, so, that puts her at the top of my list. Good luck Marilyn McCall, RD.LD Iowa mccallmk@crstlukes.com
  9. Nutritionist?

    The Dietitian Community has made many efforts over the past several years to update their members - throw out what we were told 20 years ago and get educated. There is not a certification for Registered Dietitians for celiac disease so, by asking questions and hearing what they have to offer you can determine if they can be helpful to you. There is a strong family history of celiac disease which has motivated me to become as knowledgable as possible and I began a celiac disease Support Group and I learn a ton from them also. I am fortunate that I can visit this website to learn as much as possible to pass on the the members and all of the outpatient and the public that are unaware and still suffering. An RD can be extremely helpful with weight management issues and pediatric problems such as failure to thrive with our youngsters suffering from celiac disease. Marilyn McCall, RD.LD Iowa
  10. I told the mom about getting a biopsy but since he has other symptoms (enamal, liver enzymes) thought a blood test could be a first start. We have ask this doctor to speak with us and refused (he went into medicine not public speaking). Understood that Dr. are undereducated but for a dr. with confirmed celiac disease for 7 years that also has children and certainly understands the longterm consquences I guess I will use the suggestion to my clients to lie ...or get another dr. Sad statement. THanks for the replies. marilyn
  11. I have spent the last two days saying "Now, I do not want to play doctor BUT if your Dr. will not order a celiac disease blood screening insist or go to a different Dr." There is an MD in the community (small) that has had celiac disease for 7 years. Unless there is abdominal distress, diarrhea...just like he/she has...will not screen for this even after it is suggested. A lady joined our support group having been doctored by this MD for the last 5 years before it was screened and then dx. Sent 3 people back yesterday. A 16 year old with what I am suspecting is DH (liver enzymes are off, rash on face since he was 2, thin tooth enamel - mom actually came to me because of his autism and looking for help for other food issues) and later in the day a phone conversation with a mom. 3 kids - 8, 10, and 14. 1 and 2 under 5th percentile for ht/wt and the oldest lost 60 pounds in one year....). Will be interest in hearing back from them to see what happens. This is very frustrating but I guess all we can do is keep talking and insisting....guess I am ranting too. These people are contacting me or referred by the M.D. (the later kids for underweight status) because I am a Registered Dietitian. Not all RDs can counsel for this, granted, however, I must say that it is being paid attention to in the literature and continueing education arenas. That said, I also have a strong family history of celiac disease - my mom's twin sister had celiac disease for 41 years but was diagnosed pretty quickly by Mayo Clinic, my niece at age 13, and I strongly suspect my sister who died had it and probably her daughter who says she has been tested but I am going to continue to ask her about this is she is still having symptoms. I was screened when I suspected DH but all 4 came back -. I had my son genetically tested to due to his inattentiveness, and did the home blood test on my daughter (-). Spouse is having a lot of flatulance lately that we cannot figure out and I am about to send him.... If anyone has any good ideas for working with or around this dr. I would appreciate hearing. Marilyn
  12. Jones Ct. Area Support Group, JR Medical Center Cafeteria, 1:00 Second Thursday of every month. All Welcome
  13. Jones Ct. Area Support Group, JR Medical Center Cafeteria, 1:00 Second Thursday of every month. All Welcome
  14. I agree that the nursing home needs to comply. You will be doing all the people who come there in the future needing gluten-free meals a favor. Get a Dr. order, ditto to the suggestion to write everything down and keep records of conversations. Nursing homes are inspected and the dietitian will check to see if Dr. orders are followed. If after a period of time they do not I would report them - that is a nursing home's worst nightmare. The Department of Inspections and Appeals will look into the complaint. That dietitian needs a wake up call! With diagnosis becoming easier and more common we will have more and more gluten-free orders. Figuring out how to provide 100% of the RDA for vitamins and minerals, adequate fat, protein and calories no matter what the diet is his job! Monitor her weight weekly - while they are solving this problem you do not want her to lose ground - that is hard to recouperate from. If a patient loses weight the state will want to know why and they have to document the reason for significant undesirable weight loss. There are liquid nutritional supplements that might be a good idea to try in the interum. Have the NH check their formulary - either Ross or Mead Johnson probably. The sales representative will be able to recommend one. We use Resource Plus from Novatis (now Mead Johnson or visa versa). But check with whom ever they purchase these types of items from. As a dietitian in a small hospital I understand the problems associated with educating the staff and compliance. It seems everytime I need to post the list (and it is extensive), go purchase special foods - but this needs to be done. The Food Service Supervisor also need to take responsibility. What has helped is to designate a shelf in the freezer and kitchen for gluten-free foods. On the shelf also should be an envelop of common gluten-free foods. One concern I have it the cross contamination and we have not gotten a separate toaster -yet. The FSS and I are going to sit down and figure out how we can do this - one idea would be to have a Rubbermaid that holds the toaster, pans, spatulas etc. Good luck. Marilyn McCall, RD.LD Anamosa Iowa 319 462 6135 ext. 6353
  15. I have heard a rumor that the farmers/agricultural people are considering a spray to use on fresh fruits and vegetables to increase their shelf life and that this spray contains gluten. Has any one heard of this or know where I could go to look for any new news concerning this. Many thanks Marilyn