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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 cal220

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  1. I would tell the principal everything. Bringing a big cake in without telling you is bad enough, but not letting her have ice cream is beyond horrible. The school parties and events are so tough, there is always gluten everywhere. I was room mom in my celiac sons class this past year. Then I could make the parties gluten free as much as possible. Also next year make sure she has a box of treats on hand in the class - M&M's, Skittles, her favorites when the unexpected birthday pops up. Good luck, it will get easier!
  2. You mentioning how your son is craving milk gave me flashbacks to the weeks before my son was diagnosed at age 3 (he's now 7). He always wanted milk and yes in the middle of the night too. His main symptoms were the distended stomach and skinny legs (but that can vary so much). You aren't being paranoid, get him tested or have more gluten free days for him and hopefully you'll have an answer. Good luck! Carol
  3. I hope your appointment went well and you were able to be some answers. As for your daughters poop (yes, love the poop talk!)though I'm not strictly gluten free, if I have been sticking to the gluten-free diet well I get the same way. My gluten-free son is that way sometimes too. His non-celiac gluten eating brother has the giant poops. The only suggestion I can offer is more fruit. As for a TTG of 30 I don't know..but I've heard of people being very sick with a low TTG and others feeling quite well with a high TTG. Then there are the poor kids who have all the classic celiac symptoms but get a false negative on the blood test and the doctor insists they couldn't have it. Celiac is so tricky since symptoms can vary so much. Hope you had a good appointment!
  4. That is crazy - I've never heard of that either. Only annual blood tests here and siblings TTG tested every 3 years.
  5. Just before he turned 3 he seemed to be extra tired - so I took him to the doctor thinking he was anemic. He wasn't so we went on another couple months. During that time he seemed extra irritable, wanted lots of milk and one week he would only eat yogurt! He never had diarrhea and he was pooping like clockwork normally every day. A couple weeks later we realized he was looking unusually skinny and had a distended tummy! So I searched on the internet for "distended stomach" and found celiac (had never heard of it) Took him to the doctor who now agreed he was looking pretty sickly. About a week later we actually had the celiac blood tests. In the meantime he started what we now know were bladder spasms caused by the vast amount of poop stuck in his system that was pushing on his bladder. But the blood test came back positive - a TTG of 177. We put him gluten-free right away and then in the coming weeks saw a GI who I remember circling his number 177 on the results and said "there is only one thing that causes that." We agreed no biopsy and then another specialist that we decided to get established with also saw no reason for a biopsy. How long did it take to heal? The bladder spasms stopped right away. Maybe 2 months for the tummy to go down. His TTG had dropped dramatically 4 months later to 14 and since then he's always been negative. We had it easy - from when we first noticed he was tired to diagnosis was 4 months. I will always think his was triggered by a regular stomach bug he had 2 months before the tired symptoms started. Also we found out he is double DQ2. I hope the diet is showing some results for your daughter. Also I understand the biopsy can miss the damaged area leading to a false negative, while a positive blood test means positive. Also, I've read that some people remove dairy while the healing is taking place, though we didn't. Let us know how she does.
  6. At age 3 my son had very positive blood work and we put him gluten free right away. The two GI doctors (one who specializes in kids celiac) we saw in the weeks after that quickly agreed that a biopsy was not necessary. It is now 3 1/2 years later and I've never regretted that decision. I hope she feels better soon!
  7. Two years ago, Aetna flat out denied a individual health insurance policy for my then 4 year son because he had celiac (with no complications). At the time they said celiac is cause for automatic denial regardless of the situation.
  8. Mackinac Island, Mi

    I was there earlier this summer for a quick day trip with family including my 6yr. old celiac son. We got him a bun-less burger at Mighty Mac Hamburgers, it was ok and fast though there are probably better burgers around if you want to try a sit down place. We got our fudge from Joann's. We stuck to the basic flavors and he didn't have a problem (though he is not very sensitive.) There was a person that knew what we were talking about when I asked whether it was gluten free. We did the guided carriage tour and my son and his twin were rather bored - I wouldn't do it again if I had the choice. Many years ago before kids, dh and I rented our own horse and carriage there - I'd recommend that. I also noticed a nice playground at the school that my kids would have enjoyed had we had more time. I look forward to taking them back when they are better bike riders who can handle the bike traffic. I don't know about bringing your dog, but we used Shepplers to get over there and they were great. That is one of my favorite places - enjoy!
  9. I highly recommend Dr. Jeffery Lewis at Children's Center for Digestive Health Care across the street from Scottish Rite Hospital. Dr. Lewis is the best there is for pediatric celiac disease. He founded the local chapter of ROCK (Raising Our Celiac Kids). Very dedicated, smart and friendly. Good Luck!