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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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About millersinkenya

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  1. My daughter, 14 months, had bloodwork done. My son is dx celiac (-BW, +ENDO), so we had her tested because she is showing so many of the same signs that he had. Her Immunoglobulin IgA came back low- the doctor says she has IgA deficiency... What does this really mean? I mean, I understand it all, but as far as her life goes, do we need to be overly protective or overly cautious regarding her health? Just looking for thoughts and experiences for those of you who have dealt with it.
  2. I could be. Has she started any solids yet? My kiddos had diarrhea really bad and then when we started solids, it was awful. I mean, 15+ stools per day when not ill. If they were ill, they had 25+. I was literally changing diapers all of the time. Once we cut the gluten out for my daughter, now she has extremely solid poos. I had to cut it out of everything I was eating... in the States, is there gluten in formula? There is here, so we unable to give her formula at all, too. With my son, his poos now range from good/solid to diarrhea. Not sure if he is super sensitive or getting glutened at school somehow. I think that depending on the amount she is getting, that could make her poos vary from ok to awful. I would talk to your doctor about what to do, since she is so young you want to make sure that she is getting the right nutrition. Good Luck!
  3. Thanks, Kaysmom. We have had him screened. I think he was quite a bit younger than he is now... do I have to have it done every so often? I don't think he has a problem hearing, but I guess I wouldn't know unless we had him tested. Thanks for the encouragement
  4. Thanks, everyone! I guess I just really need help with cutting more things out of his diet. I assumed I would have to cut everything out and add it all back in slowly- impossible for a four year old to understand. I think I will start with milk. We don't have anything with soy, so I think that is already cut out. I will go back and read all of the labels again. Most things we have to make from scratch here, so that is one good (but hard!) thing about it all. I definitely will keep an eye on the bipolar thing, but I just don't know how much I believe that there is onset in childhood. Obviously, I have thought about the tendencies that he has, but I would not ever seek a bipolar disorder label for a child. There are many other things I would do first. I have wondered about the autism spectrum. I am a special education teacher, and this has crossed my mind a lot, actually. I know an autism specialist here in Kenya, so I may try to meet with her and get her opinions. I don't know about the loudness factor on tv and such, but I am not sure that I think it is sensory processing. Although he is quirky with how he likes his clothes, etc., I know MANY kiddos that are this way and do not have SPD. I am this way with tags and such... who likes to be uncomfortable? Not me! I will follow up with the behavioral issues with his doctor. I just want to get some ideas as to food, how and what and when to cut thing out and how to tell if they effect him or not. I think the food dyes need to go, for sure. Any other suggestions?
  5. Yes, he was diagnosed via biopsy. I do suspect that there is some intolerance to something... all RAST have been negative. We have not done a skin prick test. He has NOT been tested for any deficiencies. He goes to preschool each day. His teacher has celiac as well, so she is hypersensitive to his needs which is a huge blessing. He does have times at school, recess, etc., when she is not there but there are other teachers around who are aware of his celiac diagnosis. Our househelper is here with him some, but the house is gluten-free so she can not give him anything that he can't have. He does get diarrhea, migraines, sleep disturbances, etc. when glutened. He is extremely verbal and always has been. He is just so intense in all of his behaviors- even when he watches a tv show, the tv is loud. everything just seems to be so intense... like, when he was little and even now, time outs do not work. he will scream and cry and bang the door for HOURS. I am not even kidding. He will not give up fighting, everything is a fight, and he doesn't even learn why he was in time out in the first place because of his intensity surrounding the events. But, when gluten free (those 3 weeks) he was a great kids, never in trouble, never fighting about anything, very compliant and happy. I am just so overwhelmed with trying to figure out what the trigger is. There is a history of bipolar in my husbands family, but i do not believe that bipolar is a childhood disorder at this age... I really have this strong feeling that it is his food. But I dont know what. Oh, also, he is a very heavy wetter. He either pees the bed or goes through 2-3 diapers per night. Day time trained since he was 2 years old. Does that help at all?
  6. I am not sure where to even start. My son, almost 4 years old, is dx celiac as of August this year. Ever since he was young, we have had so many issues with his health and his behavior. He is so intense, screams or hours, hits, kicks, etc. He can be so happy one minute and then pissed off for the littlest things. After we got the diagnosis, we immediately went gluten-free. After two days, he was a new child. He was happy, so sweet, thoughtful, did not get mad at hardly anything... was a normal kid. This lasted for almost three weeks. Then he got accidentally glutened. Since the middle of September, we have really been struggling again with his behavior. I think he is VERY sensitive to gluten since cutting it out, and I am not sure what else. I don't know what to do with him. Honestly, I wish I could have him put in the hospital and given something (I don't even know what) for nutrition that is non-allergenic and let his body just clear out. I know it sounds harsh, but how do you take a four year old off of EVERYTHING and slowly add stuff in and see the reactions they are causing? How do you find out what they are sensitive to without doing something so drastic as to cut out all foods for a while and let them clear out? I don't know if it is gluten from somewhere or milk or soy, etc. I am just so lost and tired with it. I am worried that if it is not his diet, then maybe he has some serious issues that we need to address other than by diet. But, I am a big believer that our diets have so much to do with our health. The kicker is that we live in Kenya and we do not have access to many things here. If you have had a toddler with behavioral issues, how have you tried to see the connection with that and food?
  7. Endo Question

    no, they are in the esophogus... the GI saw them during the endoscopy.
  8. Endo Question

    THanks for your reply! We wont get her labs back for another week or so. They had to be shiped to South Africa to be processed. Since my son has it, we went ahead and did the testing. The doc said that the folds looks smoother than he thought was normal, but we do not have the biopsy reports back. They look smoother on the photo than things I have seen online, but I have no idea what I am looking for, really Ever heard of the white bumps?
  9. Endo Question

    Try this:
  10. Endo Question

    Sorry! I just got it off of google. I didn't sign in to see it, so I had no idea. Anyways, I will see if I can find another one.
  11. My 12 month old daughter had an endoscopy today because my son is celiac. We are testing everyone in the family. She has started to show a similar pattern as he did at her age. The GI doc came out and gave me 4 photos from the endo today. He said that the biopsies will tell us one way or another, but there were two characteristic things he noted... there was quite a bit of smoothing out of the folds- he expected them to be much larger, but they werent. Secondly, there were white bump things in another picture. I am not sure what these are. Anyways, he wants her off all wheat ASAP (no big deal because she is refusing all food other than milk) and said that he assumes it is going to come back positive. I am not exactly sure what he said because we live overseas and despite speaking the same language, there is a lot lost in translation- accent, different words, rate of speech, etc. Do these two things sound like something that would come up for celiac or not? My son's pics did not have white bumps and his folds (or whatever you call them) are more raised than my daughter's picture. If you look at figure 3 on this link, click on it and it will show you 5 pics- the last one has a picture of the bumps that my daughter had on her picture... for reference: Thoughts?
  12. Let's chat about rashes... My son (3.5) has just been dx with celiac through biopsy. When he was younger, he had a persistent nappy rash- it was terrible! Bleeding, red, nothing helped it go away. It finally went away once he potty trained a year ago. My youngest daughter has started this same nappy rash in the last couple of months, about the same time his started. She has dropped from 75% to 22% in two months. The doctors want to test her for celiac as well, and she is only 12 months old. So, the question is, did anyone ever have a terrible nappy rash on their little ones who eventually have been dx with celiac?
  13. I would totally agree with you. We are just a few weeks in and I am sad for him! It is just one more thing to add to the list of life issues he will have to deal with. It is just hard. Glad you are here, though, and doing what is best for your little girl!
  14. I dont think my son has ever been healthy. He is 3 1/2 and has been suffering from migraines, asthma, restricted growth, borderline anemia, sleep disordered breathing, chronic infections, nose bleeds, behavioral issues, diarrhea and vomiting his entire life. It has been a nightmare. We are two weeks and 2 days into the gluten free diet and he is a totally new kid. I remember looking at him when he was younger and knowing that this was not my child. I could almost see him stuck inside himself, if that makes sense. It was like his life was clouded by all of the illness that he could not be seen. He is so happy and sleeping well and has not had a migraine since we started this after having two per week. It is so hard, though, for me to do food things with him and he just doesnt understand it yet, so hopefully he will soon! I am so thankful we caught it early and I am sorry for those of you who have dealt with ill health your entire lives.
  15. Help With Pathology Reports?

    UPDATE: The GI doctor has written back to me and stated that it does show that he should be diagnosed with Celiac Disease. They are sending me information on Monday. I guess we are officially gluten-free around here.