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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 jmjsmomma

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  1. My 6 yo was dx celiac in Jan 09. His only symptom was that he literally stopped growing. He wasn't even close to BEING on the growth chart. By Oct 09, he had grown 5 inches...yes, in 10 months! He seems to have tapered off a bit now and is still VERY small for his age. The weight gain took longer.....even after going gluten-free he stayed 39 lbs until recently when he just hit 42lbs....and this boy EATS. I've read varying stories about how quickly it takes to see growth and weight, I don't think there is any "true" timing.
  2. Hi there, My 6 year old was dx Celiac in Jan 09. He had basically stopped growing, and at 5 1/2 he was the size of a just turned 4 year old. Other than that, not many symptoms. Anyway....can't lie...the first 3 months were hard (he was 5, and at the time I had a 3 & 2 year old). Almost immediately though, we started telling our son, his siblings, and ourselves what a blessing it was that he was not sick, that this was just completely treatable with a change of diet. Our new motto was "FOOD IS JUST FUEL". And we have ALWAYS focused on what he CAN eat, not what he CAN'T eat. He has adjusted beatifully. A lot of that is his personality, for sure, and he was just at an age when he got his dx that I could include him in everything, including a positive attitude as I knew that he was watching my every move! He is very take charge of things, and his stomach had been hurting enough that he felt better almost immediately. The very best news was that in 10 months of being gluten free, my son grew 3 inches!!!! That is more than he had grown in almost 2 1/2 years!! He is healthy, thriving, and, most importantly, happy to be gluten free as he never wants to go back to feeling as bad as he apparently did before. We've had two accidental glutenings in 13 months and he was reminded of the importance of due diligence ) My 4 year old son continues to test negative, and my 3 year old daughter had the genetic test due to being IGA deficient and shows 1 in a million chance of being Celiac in her lifetime. My husband and I are also both negative. We keep a 90% gluten-free home...the kids all eat gluten-free in the home, dh and I eat mostly gluten-free but will occassionally bring take out into the home and have never had a problem. The two other kids are allowed to eat gluten outside of the home. Over all, I can say that it has been a very positive experience once we got used to the diet, and oh my goodness.....to see your child HEALED...to feel good, to be thriving and growing...it brings tears to my eyes seeing how far he has improved in the last almost 13 months!! Staying positive in front of your children is one of the best things you can do for them! Good luck and best wishes to you and yours!!
  3. Wow....I hear crickets chirping....I'll keep researching )
  4. We use the Glutino brand cheddar crackers in lieu of goldfish.
  5. My son did not like any of the breads. He would occassionally eat the Kinnickinnick white sandwich bread. Last week, we discovered UDI'S brand of frozen sandwich bread. It is SO GOOD. It is actually spongy, like "real" bread. My 6 year old is sooooo happy that he can have gluten-free bread that actually tastes good again!
  6. I have a physical at the end of this month with a doctor that knows about Celiac Disease, so I don't want to go gluten-free until I have the panel done to prevent a false negative. Just curious about other abdominal issues in the meantime...
  7. Hello, I am new to this board but not to the forum, I post on the Parents of Celiac Kids board. My now six year old was dx with Celiac via bloodwork and scope in January. My husband and 4 yo tested negatvie, and my 2 yo had the gene test as she was IGA deficient and she came back "no chance". I tried to have my doctor do the panel on me and she screwed it up. I went to another doctor and he screwed it up. I have other auto immune issues (psoriasis) so I'm assuming I am the carrier. Our home is almost completely gluten-free unless dh and I eat take out, etc. I do eat gluten at a designated area and am very careful. My son is thriving after 9 months of gluten-free diet. So my question is this. I am getting terrible lower ab pain about 24 hours after consuming a large amount of gluten. I eat gluten almost every day, and have this nagging pain under my rib cage...like pancreas area?....that sometimes goes back and forth from gall bladder area to pancreas area. Does this sound like a gluten issue to anyone? Specifically the pancreas/rib cage area? My Dad died of pancreatic cancer at age 49 (I am 40) but I had a scan last summer with the same symptoms and everything was fine. I appreciate your time and comments....
  8. My celiac six year old just had his six year check up. His pediatrician told us to not panic about swine flu (which I wasn't, anyway). He said that he would not even take the vaccine for himself or his family and would certainly not recommend it for his patients. He said it's been rushed and it is the squalene (sp?) that he is concerned about. Anyway, he gave us all the "regular" flu mist and we are going to skip any H1N1 vaccine, if it even becomes available. My girlfriends hubby works for Novartis and is on the team making the vaccine....he said all that is available has been bought up by the government so none is available for the general public.
  9. After my 6 yo was diagnosed Celiac, I had my two younger children tested. My 2 yo daughter came back as "IGA deficient". My sons GI wanted to see her. He said that the celiac panel was useless since she was IGA deficient (I think her number was 15). He suggested two things....either test her again in six months (she is completely asympomatic), or do genetic testing. We opted to do the testing and the results were negative.
  10. We did. We were under the care of an endocrinologist for my son's growth issues before the Celiac was caught. He was tested for growth hormone deficiency and it came back normal. It wasn't until we were under her care for about a year that he started complaining of belly aches and had a very distended belly. Other than that he was not symptomatic. His GI told us that the way celiac is presenting in my son is that it is blocking the bodys receptors to absorb the growth hormone that the body makes. My son just turned 6 this month, he is 40 1/2 inches and weighs 39lbs.
  11. Hi and welcome. My ds was diagnosed in Jan 09 at the age of 5. His only true symptoms were a distended belly and short stature. Then he started complaining of belly aches so that triggered his endocrinologist to do a celiac panel which was off the charts positive. Even six months into it, while he is doing SO much better, he is only 40 inches and 38lbs....he'll be 6 next month. We have similiar little boys! I hope that you can get a dx one way or another very soon!
  12. My son had his bloodwork done last week, six months after his celiac dx. I am thrilled with the results! IgA: Jan = 62.8 June = 1.3 (Norm 0.0-10.0) IgG: Jan = 74.2 June = 6.1 (Norm 0.0-10.0) tTG IgA Jan = >100 June = 8!!!! (Norm 0.0-0.3) tTG IgA Jan = 58 June = 14 (Negative <9) I can't believe his antibiodies that were >100 are now 8!!! 5 more to go and we are within normal levels. I am so incredibly relieved. I feel like a stone wall has been taken off of my shoulders. The never knowing if I'm doing all I can to help my son heal, constant questioning/doubting, etc. WE ARE WINNING! Who knows what another six months will do....hopefully put at least 5lbs and 4 inches on him!! I just wanted to share that it works, it really works and I am so happy that my son is healing. It is empowering to say the least.
  13. Welcome. My son is six months into being gluten free and still complains weekly of belly aches. We were told that it would take a year or so for his intestines to heal. I am also in the Dallas area, we see Dr. Kendall Brown (pedi GI) in Dallas. Not sure if he takes payments or not. I hope that you are able to get help for your son soon.
  14. I certainly wouldn't let Celiac Disease stop me from having another baby if that is your hearts desire. My 5 year old was diagnosed six months ago. My 4 year old tested negative and has no symptoms at all. My 2 year old had to have the gene test because of her age and something weird popping up on her celiac panel and she is all clear and will never develop celiac disease. My 4 year old may or may not.....at some point we may do the gene test with him but it is not currently necessary. All that to say.....I agree with the previous poster. It does get easier and easier.
  15. This month marks six months since my son's Celiac diagnosis. He seems to be doing very well. His distended belly is gone, his belly aches are (almost) gone, his leg pains have decreased significantly. He went in to his GI for a repeat Celiac panel yesterday. His tTg in January were "more than 100", the scope that followed showed a torn up little intestine. I know this has been asked before, but shouldn't he have started gaining weight by now? He has grown almost 3/4 inch and FINALLY hit 40 inches in April but he still is just 38lbs, only one pound more than where he was pre-dx. He is still in a toddler size 9 shoe too and has been forever. He will be six in August and starting kindergarten....he is SO TINY compared to his peers, it breaks my heart. I know our GI said it could take a year for his body to recover enough to see any signifcant growth/weight gain, but I had foolishly pinned some hope on seeing something by now. It is so sad to see his 4 year old brother shoot up past him. He does still also complain of random stomach/joint pain when I know that he has not been glutened. He does great on the Gluten-Free diet. Eats very, very well and our home is Gluten-Free as well. He did get glutened last month and suffered for ten full days from it, so I know how he reacts now when glutened. Any thoughts/experiences?