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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This 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 FREE email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity

    Sassy Cat

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    About Sassy Cat

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    • Gender Female
    • Location St Louis Area

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    1. Sassy Cat added a post in a topic Getting Worse?   

      My daughter was recently diagnosed with Celiac. I have found that cross contamination is usually the culprit when she gets sick now. When she feels bad now, her reactions are much more severe than anything she had before going gluten free. Her doctor thought that it was very possible that her healing body would react much stronger than ever before. I am at the point that if I do not make it she is not eating it. I just can not stand seeing her sick because of a decision that I made. The only food that I can be sure of is what I make myself. The items that were made by family have almost always ended up making her sick - even if it is an item that is naturally gluten free. I will take her out to eat (rarely) but only at a very select few restaurants that actually understand celiac. I have found that people understand what is gluten free much easier than anything dealing with cross contamination. Nobody seems to understand how serious is can be if her food comes in contact with any gluten. Our new family motto is - take food with us everywhere!
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    2. Sassy Cat added a post in a topic Gluten-Free Food Taken Away At Sea World   

      I carry a doctor's note for my daughter for this reason. I am so scared that we will be stuck in a situation where she will not have anything to eat. I wonder if the Sea World employee that checked your bag was even fully aware of the policy. It seems like they should have had their manager come over to talk to you and decide whether to approve the food. When we went on vacation a couple of years ago, we brought a whole suitcase full of food and a doctor's note. I am so glad that I never had to argue to have safe food for my family on that trip.

      I am so sorry that this happened to you on what should have been a fun day!
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    3. Sassy Cat added a post in a topic Celiac Symptoms At 2 Weeks Old?   

      I believe that my daughter has had symptoms since birth as well. I nursed her for the first 4 months or so. She had terrible "colic" that whole time. Looking back, I think it had to be celiac. She had terrible gas and explosive bowel movements. She would cry for hours at a time. I had never heard of celiac at the time so I believed everyone when they told me that this was normal for some babies. My husband was diagnosed with DH when she was 5. By that time, she was a gassy child who did have diarrhea frequently but for some reason celiac never clicked in my head until just recently. I know that I should have picked up on everything earlier now that she has tested positive.

      Having some sort of documentation from a doctor regarding diagnosis has been very important. We needed that documentation from the doctor in order to put a 504 plan in place at her school. I made copies of the letter and bring it with me anytime we go to a place where they do not allow food to be brought in because they want you to buy theirs. Her school has monthly skate nights for example. We bring a bring a bag of gluten free snacks and the doctor's note and have not had any problems. We have a Six Flags in our area and I plan to use the note to bring snacks for my daughter into the park - since there is really nothing for her in the whole park as far as I know.
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    4. Sassy Cat added a post in a topic Need Info To Help Teach Celiac About Mistakes They Are Making   

      I have not been able to find any functioning support group in the area...and I am in the St. Louis region. I had hoped to find something for my daughter to attend. I asked her doctor and I have come up empty handed. I spent a lot of time looking for ANY kind of support group. She actually lives in a retirement community and is the only person in the whole community diagnosed with Celiac. They will not accommodate her needs in any way at the retirement community.

      I understand that when it says even small amounts of gluten can cause harm but unless I can find something that says - Do not eat any of a pie made in a regular gluten crust. I just do not think she is going to completely get it. There are lots of people telling her to go ahead and eat it - there is only me saying not to do it.
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    5. Sassy Cat added a post in a topic Need Info To Help Teach Celiac About Mistakes They Are Making   

      That is great! Can you think of anything that I can find that says not to do some of the specific mistakes she is making like picking bread and/or croutons off of her food, and eating the pie but leaving the crust? I can not find anything that specifically says not to do those kind of things.
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    6. Sassy Cat added a topic in Celiac Disease - Friends and Loved Ones of Celiacs   

      Need Info To Help Teach Celiac About Mistakes They Are Making
      While I do not have Celiac Disease, I think that I am probably the person in our family with the most knowledge regarding Celiac. I had never heard of Celiac until my Mother-in-law was diagnosed approximately 7 years ago. One year later my husband started with a terrible rash and was then diagnosed with DH. My mother in law saw a nutritionist and I trusted her to watch her own diet. I read some books and learned how to cook gluten free at home but when my husband kept sneaking donuts, big macs, and other items I hate to admit that I kind of stopped trying quite so hard. I still cooked gluten free at home but I gave up on nagging him and stopped doing research - I have 2 kids so I do not want to be his mother. Just this year my 11 year old daughter was diagnosed with Celiac. I have read everything I can get my hands on, got rid of almost all of the gluten in my house (keeping a few favorites for my teen - very few!), got the school on board, and basically became her gluten free advocate. I will do everything in my power to keep my daughter safe and healthy.

      After all of my research, I have discovered some things that we were doing wrong as a family before my daughter's diagnosis. My house is on track at this point and my husband has corrected his ways and is setting a good example for our daughter. I am really concerned about my mother in law. She has had several strokes and has a hard time saying what she means at times. She is doing some things wrong when it comes to eating. She picks croutons out of salads. She eats pie up to the crust. She has even tried to pick the meat off of a White Castle hamburger. She is always complaining of headaches, fatigue, and how her feet hurt. I know she is getting gluten in her system. She is older and a widow and wants to eat out all of the time but does not communicate her needs to the staff regarding her Celiac. She is under the misconception that the only symptom is diarrhea and if she does not have that then everything was OK.

      I am hoping to find some information from a reliable source that is simple that I can share with her and her other children that will make it clear that her food is not safe if it has ever touched gluten. Everyone in the family thinks that I am overreacting so it really needs to come from a third party. A book is simply too long for her to be able to get through at this point because of her strokes. Just wait until the next family function when I start telling her other 5 kids to get themselves tested!

      I would appreciate any help and/or advice. Thanks so much!
      • 4 replies
    7. Sassy Cat added a post in a topic Results Of Kids Testing :(   

      My daughter is 11 and has recently been diagnosed with Celiac disease. My husband has had DH for about 6 years and his mom has Celiac so when the blood test came back I was kind of against doing any kind of scope. My daughter also had some bouts of blood in her stool which I am now pretty sure were from many years of constant diarrhea. When I talked to my daughter's GI, I listened to his reasons for wanting to do both a scope and colonoscopy. I ended up going ahead with the biopsy largely because of the blood in her stool - I did not want to miss some other problem by avoiding the test. In the end I am so glad that I went ahead with the biopsy. I thought I was ready for my child to be diagnosed. I already know about the gluten free bakery. I know how to cook gluten free. I know which restaurants have a gluten free menu. I figured a lot of this out when her dad was diagnosed. I found out I was not ready for the kid issues. After just a few weeks and a whole lot of mistakes at her school and I found myself in the position of asking for a 504 plan. I do not think I would have been able to get the 504 plan had I not went ahead with the scope. My daughter is 11 and her friends are 11 and I just did not think about how 11 act towards each other. When they had cookies at a field trip not only could my daughter not eat the cookie, her friends taunted her with their cookie. When the art teacher decided to have a snack, my daughter was not allowed to even read the ingredients and had to sit there with nothing because her snacks were in the classroom not in the art room. My daughter has had to throw part of her lunch away because other kids were grabbing it and contaminating it with their crumb covered hands. As I started thinking about middle school, which will include cooking classes that every kid takes, I knew a plan that the school would have to follow would be in the best interest of my daughter.
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    8. Sassy Cat added a post in a topic Domino's "Gluten Free" Crust   

      Domino's new "gluten free" crust is absolutely horrible in my opinion. My 11 year old daughter was recently diagnosed with celiac. Her friends and school are trying to figure out the things that she can eat. I can not tell you how many times someone has told both me and my husband about this "gluten free" pizza. I then have to explain that it is not actually gluten free since it would be contaminated and my child is not going to be able to eat the pizza. I know that at some point someone will buy this falsely labeled pizza for my child and expect her to eat it at some event or school function without asking me about it. I am trying to teach my daughter how to politely tell people that she can not eat anything contaminated with gluten.
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    9. Sassy Cat added a post in a topic 504 Plan, What Do You Ask For?   

      I am in the same situation. I just requested a 504 plan for my recently diagnosed 11 year old. She will be in middle school next year and the idea of multiple teachers and foods class is just plain scary. I would love to hear any advice.
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    10. Sassy Cat added a post in a topic What Specialty Of Dr. Should I Look For To Treat Dermatitis Herpetiformis?   

      Thank you for your quick response!

      I have always known that my husband needed to take his diagnosis seriously. I did a whole lot of work learning about his disease, learning to cook gluten free, and finding out about products. Despite my efforts, he had to decide for himself how seriously he was going to take his health - I can only do so much for him. I can make our home gluten free but if he is going to go to work and eat everything laying around....he is still going to have issues. He has tried to do better in the past couple of years and understands that he needs to set the example for our child. I will stay on top of celiac from this point forward because of my daughter. Of course, I am concerned about my husband as well.

      When you stated that you see an ND....what is an ND?

      My husband does get regular blood tests from his dermatologist...but that is the only doctor that he sees....for anything. I just do not think this particular doctor is the right doctor. I also know he needs to see a regular doctor for a basic checkup but I have been unable to get him to actually do it.

      I do not think that my husband or daughter have been tested for vitamin deficiencies. I will definitely make sure that happens with my daughter and will do the best that I can do with my husband.
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    11. Sassy Cat added a topic in Celiac Disease - Doctors   

      What Specialty Of Dr. Should I Look For To Treat Dermatitis Herpetiformis?
      I am wondering what kind of doctor would be the best type of doctor for someone with Dermatitis Herpetiformis to see on a regular basis. My husband was diagnosed with Dermatitis Herpetiformis approximately 6 years ago. I did some research at that time and learned to prepare gluten free meals for both him and my mother in law (who was diagnosed with Celiac approximately 7 years ago). My husband was not as dedicated to learning about his disease as I was. I would make special food for him and he would sneak off with the kids and eat a big mac or have a donut. At this point he is really trying to follow a gluten free diet. He has been seeing a dermatologist since his diagnosis. He does take Dapsone currently. A couple of weeks ago, my 11 year old daughter was diagnosed with Celiac. I have been doing a ton of research about Celiac once again and I now realize that a lot of the information has changed. I have found out about the possible link to iodine and the need for gluten free personal care items for my husband through my research. I can not understand how his doctor has failed to mention any of these issues while treating my husband. My husband is really trying hard to be a good example for my daughter. I am wondering if a dermatologist is really the right kind of doctor for my husband to be seeing. There has never been any mention of the damage that could be happening to his intestines and his logic is if he has no intestinal symptoms then he should have no damage - but I think he could in fact have possible damage. What kind of doctor is the best to treat Dermatitis Herpetiformis? A GI doctor, a doctor that deals with autoimmune diseases, a dermatologist (maybe a different one), or some other specialty? Any help would be appreciated.
      • 3 replies

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