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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 Jules

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  1. April Thanks - She does get Pediasure in her G tube. WE have scoped again and there has been no change. I call today for the results from the one done after 6 month so we shall see and we go to an allergist on Thursday for testing for other things as her dad has food allergies.
  2. Hi My daughter was tested for celiac disease several times in her blood work and was negative all 4 times they did it. She did end up havng biopsies done and it shows early warning signs of it..... Hope this helps. I still question this diagnosis and am waiting for another biopsy to confirm that she is getting better after 6 months of no glutten...
  3. Thanks all She was a good eater and just stopped one day like someone flipped a light switch. That is what bother us most. Our GI thinks like some of you it just hurts to eat so she stopped and she will start when she is ready again. I too worry about her not being hungry while using the feeding tube but the drs do not want to stop it until she eats enough at each meal to support herself. She really does not have many signs of celiac disease at all - only the fussy part and not sleeping well...... I just want my little girl to eat normal again and not be in pain. Thanks again. I will talk to the drs about the stomach thing you said. Also she is going for food allergy testing on Thursday. Bonnie
  4. My daughter has had 3 since we found out but they have been: 1 to find out, 2 when we put in a feeding tube and again yeasterday when we put in a new type of feeding tube. This has been done since April 2008. My GI said he would probably do it again at 1 year since she is showing no signs of any improvement... The 2 biopsys did not change so am awaiting for 10 days for these results.
  5. Thanks all for you advice. It is just so hard to sit by and watch and feel like I cannot do to much to help her. Her GI wants to put her in a behavioral eating program that force feeds and I am not on board with that so we are just going to try to help her as much as possible and see where we go from here as she is gaining weight and growing and looks healthy but it really is thanks to the feeding tube. Bonnie
  6. Can anyone tell me how long it takes for kids to show signs of improvement. My 2 year old was diagnosed as having celiac disease in May of 08. She did not test positive in the blood workup but the drs say she showed the early warning stages in her biopsy. We have been working on a gluten free diet (when she does eat something) she is being supported by a G tube really, for almost 6 months and they did another biopsy and I am awaiting the results. My Drs said it could take up to 1 year to see changes. My big question is if she is barely eating (for unknown reasons she stopped in April 08) and what she does eat is gluten free shouldn't we see healing taking place. She never had any of the normal gluten symptoms that I see here. She did not sleep through the night and would fussy in her sleep, she was gaining weight, did not have an extended belly, pooped every day but usually hard. SO with all this said I am still questing her diagnosis........ Thanks for any help anyone can give me. Bonnie
  7. I too have a 29 month old daughter who at 23 months decided she was done eating and starting and fell off the charts - she was 18 lbs at 2 years old. No one knew what was wrong. She is now on a feeding tube and is still not eating enough to live on on her own. We go again on Monday for a Mikey button to be placed in her stomach. We has one test after another done and the only thing we came up with was early warning signs for Celiac disease but she tested negative for all in blood work. This was found in an endoscopy. They will biopsy again on Monday to see if we see any changes but so far gluten free has not changed her in any way and we are 6 months into this thing. So I am still not convinced she has it. She has gained weight and is now on the charts but I feel that is only because of the feeding tube. I hope things go ok for your daughter and you find a diagnosis for her and if it is Celiac's that she gets better quickly once she is gluten free. I am using my OT's login right now so I am not sure if I can post my email for you to use or how to send you something personal as I would love to chat with you. Bonnie Mom to Genna
  8. Just wondering if anyone has found Pediasure to be a trigger for any of your kids (it is suppose to be gluten-free)? The 2 yr old little girl I work with (I'm an occupational therapist) is NOT allergic to milk or soy products according to the MDs. Her family and I suspect that there still might be some other additive or something in the Pedisure which is causing her nauseau and/or lack of appetite to the point where she is now G-tube fed to sustain a reasonable weight--unfortunately the only G-tube intake formula suggested by the MDs at this point is Pediasure, so that is her ONLY significant source of food/liquids at this point. Any thoughts are appreciated. Jules
  9. April, Thanks so much. I would appreciate if you could post my original description on the kids with allergies site that you are referencing. I omitted my post that this child has been tested for the main food allergies (although who's to say it's not some uncommon allergies that the drs. didn't bother to check on yet). People have been sooooo helpful by responding to the posting. I did want to clarify a couple of things that I omitted in my original description. Dysphagia and EE were both ruled out by the MD's. I'm an occupational therapist so I am pretty familiar with sensory processing disorders and I am not seeing any evidence of that in this case. Hope this additional info helps. If it would be easier to register myself I can do that just let me know. Thank you. Jules
  10. thanks all for your advice. We are going to follow up with her dr about EE and EGE. She does not exhibit the normal symptons that other kids have. No diherra, no bloated stomach - she has not slept through the night since birth and some night are better than others - but in April of 08 she just stopped eating and drinking. She is still not even drinking enough during the day. Questions - are any others on feeding tubes for celiac disease? I know other said same probelems about eating and spitting out foods but there is nothing she really will eat anymore. Not even ice cream or candy on a regular basis. She likes to suck things off of foods (eg - butter, salt, cheese). What other things should I push the drs for? Thanks for your help -
  11. I was wondering if anyone could give me an approximate length of time (I know that its different for everyone) that it should take the intestines to heal after going on a strict gluten free diet (with no known gluten mishaps)? The child I am referring to is 2 years old and has been on a gluten-free diet since April. Thank you.
  12. I was wondering if anyone could give me an approximate length of time (I know that its different for everyone) that it should take the intestines to heal after going on a strict gluten free diet (with no known gluten mishaps)? I am an occupational therapist working with the family of a 2 year old little girl who was diagnosed in April with celiacs and has followed a strict gluten free diet since then. She still refuses to eat most foods and when she does eat, its just a bite or two of something and then she's done. I would have thought that after 6 months she would have significantly improved. Her family and I are very concerned and looking for any guidance. The family is of course seeking MD's opinions, etc., but many are taking a "wait and see" attitude. I will post in the babies/children's section as well. Thank you.
  13. Yes she has been tested for the main food allergies... All were ok. She also has had an MRI for a brain tumor. She had thyroid testing done also. She was down to 19 lbs at 2 years and is up to 24 lbs but that is because she is getting 37 ounces of pediasure per day to grow. She did not test positive for Celiac in her bloodwork only in her biopcies. She does not seem to prefer any specific foods. One day she will eat chip dip and the next she will not.
  14. Hi Everyone, I'm an occupational therapist working with a family that has a two year old daughter who had a series of chronic ear infections and was hospitalized in March/April. Upon returning home from the hospital her family was concerned as she had no appetite and was not eating. Eventually she was put on a G-tube (stomach tube) and is now fed at night via the tube to receive the proper calories to maintain her weight. She has also been diagnosed with Celiacs and her family has had her on a strict gluten free diet (what little food she does eat). She will often chew food and spit it out and will sometimes go for days without eating at all. She plays with her food but rarely finds any pleasure with food that she tastes. She often requests a food, tries it and acts disappointed as if her taste may be altered in some way. On several occasions she will eat one or two tiny bites and then want to be excused from the table. We are also seeing some behaviors (tantrums, yelling, hitting) that seem out of character for an otherwise sweet little girl. So here are my questions: For those of you who have had a toddler that refused to eat (or ate very little), how long did this problem last after going completely gluten free? and Has anyone heard of a loss of taste or altered sense of taste related to Celiacs? and Why do these kiddos chew and spit out the food? I would appreciate any feedback. Thank you. Jules
  15. I was recently diagnosed with celiac disease. I suggested that my brother and mother get tested as well. My brother's doctor just notified him via telephone that his blood work came back showing a high liver enzyme count. His doctor doesn't seem like he has a good grasp on celiac disease. Does anyone know if a high liver enzyme count is a warning sign for celiac disease? Jules