• Announcements

    • admin

      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


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About scaredparent

  • Rank
    Community Member
  1. I am so happy your daughter is doing well. But as far as relatives not believing you who cares. My in laws are very anti medical. THey think dr are crazy and if the test don't show positive then it is not true. But my son didn't have a postive dx but my inlaws see how well my son is doing and they applaude the diet. They say we can see how well he is doing and to keep doing it. I would care very little what they think any way. We don't have much money either but we have learned to do stuff cheap. We make all of our own bread. I make homemade graham crackers, I make alot of cassoroles with homemade cream soups. I don't know where you live but our nearest health food story is several hrs away, so we don't even use them. I know my son gets tired of ricecakes and corn torillas but I try to hid them in food and get creative on how to use them. I grill torillas and I put frosting on the graham crackers and peanutbutter on rice cakes. Good luck with your test but in my oppinion I wouldn't get tested because they can use that against you for insurance. They can make you rates go up. If you just go gluten-free and see positive dietary response then you know to stay away from it and then it is not on you medical record. Just something to think about. Good luck with you diet. You know that you have alot of knowledgeable people on this website to ask questions to.
  2. My son has been gluten-free since Feb and when he gets glutten he gets big sores on his bottom and dh. He is also very fussy. When it is the flu he just get dh.
  3. Wow I didn't think someone story go be as close to my son's life. My son is now 26 mo and has been gluten-free since Feb. But I had a long hall to hall before Feb. My son was born July 2 2003 weighing 8 lbs 6oz and was 20 1/2 in long. (We have 5 children 3 girls and 2 boys and this is my youngest that I am talking about.) But with my first 4 children I had alot of trouble with my milk coming in and staying so with the first 3 I had stopped nursing between week 2 and 3 and put the kids on milk based formula and they did fine for a while and then had to switch all to soy. Child number 2 had to go all the way down to nutramigin formaul. Child number 4 didn't grow until I started her on formual and she did great after. Very health. Then came Braunson child number 5. The dr wanted me to nurse as long a possible because 3 out of the 5 have immundifency. One of those three are fine now. I have 2 still with that problem. So I was nursing thinking that I was doing the right thing and I had a LLN tell me to try Brewers yeast tablets to help me with my milk (malt in the ingredents). I found them at a health food store. I was taking 4 in the morning and 4 at night and my milk was doing great so I thought nursing was going to be great. My son started to get thrush all the time (about 6 weeks). After dealing with this for about 2 mo I stopped and my ped told me to put him on rice cereal and then oatmeal. So I did and that started trouble. At that point my son weighed almost 14 lbs. My son stopped gaining weight and growing. He was hopilized 3 times for pnemonia diahrea and for dehydration. When they put him in the hospital they would pull him off of all food and he would be better very soon. They would dismiss him and then go home put him back on food and you guessed he would be sick again. When he was on just formula and breastmillk he did fine. Then he would gain weight. At age 1 he weighed 16 lbs. In Feb he weighed 20 lbs and now weighs 27 lbs. He was having 10-18 stools a day. He had blisters on his bottom and then he would sleep for 20-22 hrs a day. He was very sick and looked very sick. We moved when he was 1 and this summer people said they didn't even know we had another son because one of us always stayed at home with him because he was very sick. All of my son's test came back negitive. I told you all of this to say she is to young to get tested don't waist your time and money because most likely they will come back negitave. START gluten-free diet ASAP and she is young enough that she will most likly improve immediatly. I saw a huge difference in 4 days. He was down to 2-3 diapers and sleeping normal. If I would of know that all I had to do was put him on a gluten-free diet at age 4 mo and this would of all stopped I would of. PS I would also go gluten-free with her and put you 4 yr old on it also.
  4. Now that all test are done you could but her on a gluten-free diet and if you see improvements then wether the test are postivie or negitive you can tell by a diet change. All of my son's test came back negitive but had a postive dietary change. He was 15 mo when tests were done and 20 mo when we started gluten-free diet and 4 days latter he was a different kid. If I knew then what I know now he would of been gluten-free at the age of 15 mo. Good luck and this is the best website if you have any questions. Don't worry about dietitions just ask questions here. My dr just told me "put him on a gluten-free diet and see what happens" . And that was all if it wasn't for this website I don't think my son would be doing as well as he is now.
  5. We Tyson chicken all the time and my son doesn't have any trouble. My grandmother works at a food pantry in Arkansas where the Tyson plant chickens are raised and so Tyson always gives the chicken and turkeys and she gives us some. We have always eaten them with no problem.
  6. My son has been gluten-free for about 7 mo and I was told by my "mentor" (another celiac disease patient and her husband) that maltodextrin was not ok. I keep away from it at all times.
  7. Are you and her father tall? My daughter who doesn't have celiac disease is about 43 inches and weighes 41 lbs and she just turned 4 in June. My husband and I are very tall and she was at about the 75 percential at her 4 yr check up. Children with celiac disease or glutten intollerance can be small. She might be a little small but is about the right height. My son had a glutten intollerance and he has been gluten-free since Feb and when we started he weighed 20 lbs and was 26 inches tall. 7 mo latter he weighs 26 lbs and is 35 inches tall. If she is small now after going gluten-free you will see her grow a lot. There is alot of good advice here on this website. Just watch for hidden glutten and good luck. She will grow and eventually catch up. (It is a good thing you caught this early).
  8. I agree with lbsteenwyk. My son never had a postive dx but my son has had great improvement on his diet. My son been completely different and he a wonderful kid now. I would never put my son back on glutten. His gi dr told me that their was nothing wrong with my son but he is the youngest of 5 and I knew that 18 stools a day and vomitting everyday and sleeping 20-22 hrs a day was not normal. I am so glad we have been glutten free for 7 mo and we have all the support we need and is right here on this website. People on this site have taught me more than any dr and dietition could have taught me. My husband and my parents and inlaw all support us because they all have seen a huge difference. Good luck and sometimes dr's don't know everything and in my opinion you don't need a dianosis by a dr and if she is doing well on the diet continue it.
  9. My son is 2 so he puts everything in his mouth but if they have grain out thier and he is touching it and not washing his hands good and then eating he might be geting a cross contamination. Its on his hands then touchs food and food goes into his mouth. We live across the street from our feed mill and 1 and 1/2 blocks from 2 wheat field and during harvest and when they clean out our mills my son can't be outside because the dust settles on his toy and he touches the toy, toys to the mouth and then he is sick. This is just a thought about what it could be. My son also has esosinophlic gastroniteris and so he is "allergic to everything". He has a major allergy to glutten. He was 15 mo when he was tested and so I don't think the test was correct. It showed that he didn't have celiac disease. We have been gluten-free since Feb 05 and he is doing very well. Hope this helps and good luck.
  10. Boy Am I Stupid!

    You would be amazed at what restrants put flour in. I took my son for homemade icecream at a restaurant and I decided to ask for ingredient and they put flour in their ice cream. I almost didn't ask for ingredients and I was verrrrry glad I did. When in doubt ask for ingredients. Most place will tell if you tell them you are highly allergic to wheat, oats, barley and rye, and they don't want to see what happens if you get any. Make them think wild thoughts. HAHAHAH
  11. My son was growing and doing fine at the age of 3 mo and the dr had me start him on rice cereal and week later oatmeal . I started him on the oatmeal and he started to get sick. I knew nothing of celiac disease and it took us 17 mo to get him dx with a glutten intolerance. Don't let it go as far as we did. At 20 mo old he was having 18 stools a day and vomiting 2 times a day. He weigh at 20 old 20 lbs. At birth he weigh 8lbs 6 ozs and at 3 months he weigh 13lbs. I didn't know the sighs but am proud to say he has been gluten-free since 20 mo old and he is know 26 mo old and he weighs 26lbs. He is finally growing and do well. He is a happy baby and sleep normally (he was sleeping 20-22 hrs a day).
  12. Iron

    He is not able to drink OJ because it cause severe diahrea and sores in his mouth. I had heard that OJ helps. I haven't tried OC vitamins.
  13. My question is simple, does every with celiac disease have to take iron supplements? My son was not animic until he went gluten-free. When he was having severe dh about 15 stools a day, and vomiting 2 times a day his iron level was between 12 and 13. He has been gluten-free since Feb of 05 and in March his iron level was 11.3 which was borderline and then yesterday it was 10.9 so it is dropping. Is this normal or am I doing something wrong. He has been gluttened before but came out of it fine. He usually gets dh with a cross contamination but normally has formed stool and has not vomited since Feb 05. I think he is going to have to go back on iron will he have to always remain on iron or can he eventually get off of it.
  14. I took my almost 8 year old to the dr today to be tested for celiac disease. A dr from Kansas City ordered all the tests Iga, Ttg, Anti-edo??, T free, and a thyrod test in the first of July but she couldn't have the test because she had been gluten-free for a week. My daughter had her tonsil out and could only have popscles and ice cream. I saw the dr 1 week post op and she wanted her on glutten for another month for sure. It has been 6 weeks so I went to our ped office and she ordered the tests for the other dr and they said the anti-edo?? test doesn't even exists. That the test is the same as the Iga and Ttg. I don't know if there is a difference or not. The lab would not run the test. Please let me know if there is diffence so I can call the dr and have them talk to the lab. She weighs about 82 lbs and she lost 7 lbs in one week and being gluten-free. Her stomache went back normal and started pooping normal. Then I but her back on glutten and started complaining about her stomach hurting and she couldn't poop and her distended stomach cameback. I am almost positive that she has celiac disease but I want to make sure that all the test were done.
  15. My son has celiac disease and I make him stay away from MSG and maltodextrin. I think there are mixed opinions on the maltodextrin but I was told to stay away from it. Good luck