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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 simplemom

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  1. Thank you cycling lady. While relieved that my son's MD appointment was so much more encouraging than the one before that, I am still going to keep my son on an average SAD amount of gluten till the MD calls with the celiac results. If by chance the panel results are positive for antibodies, I want my son to get a biopsy ASAP instead of having to wait to do another gluten challenge. I have to admit, I am curious why he had the anemia in the first place since he wasn't anemic a couple of years ago when he got a lot of blood work to rule out rheumatoid arthritis. His diet is a very iron rich one without supplements, plus he doesn't drink milk or caffeine that would interfere with its absorption. Your sharing the above information with me helps me to know I need to stay on top of any symptoms that develop and have his blood work for anemia repeated sometime after the supplements are stopped. Edited: cycling lady....I hope your food for thought is glutenfree
  2. Update...my son went in for a one month followup MD visit today to recheck his weight and redraw his lab work. He has been eating gluten everyday. He gained a pound and his hematocrit went up to normal after taking iron supplements for a month. The doctor still wanted to repeat his celiac panel just to be sure we're not missing something with his past issues, but the MD is expecting the repeat panel to be negative. I too suspect the celiac panel to be negative, but will say I am a firm believer in gluten or wheat sensitivity, as my son has been so hyper eating wheat more than once/day. I am looking forward to limiting his wheat intake after we get the result. Also, my husband has a confirmed wheat allergy, but still eats wheat because his symptoms are sinus related and he only has problems if he eats too much. My husband is more on board with my going back to cooking wheat free meals for him now that he has watched his son react to too much of it.
  3. I agree about considering homeschool to finish out this semester if possible. If within your budget and if there are other homeschoolers in your area, there may be tutorial classes in advanced subjects he could attend 1-2 days/week. There are also computer based curriculum options for math. There are also curriculum boxed packages written to the student at that level. It sounds like your son is bright and would do well self learning with some direction from you and outside resources. In our state, a child has from July 1st of one year to July 1st on the next to complete 180 4 hour school related instructional days. If the laws are like that in your state, your son could work into the summer or on the weekends if he is sick during the regular public school days.
  4. If the rash on my back were to return, would it be easier to just ask for a referral to a dermatologist and get a skin biopsy? Thanks for all the information above!
  5. In researching celiac during the pre testing period for my son, I have had some of the symptoms, but throughout life they haven't gotten worse, some have improved. As a toddler and young child I vomited frequently, but we didn't have health insurance and my mom never had me tested for anything. I had 4 permanent teeth that came in with only partial enamel, but the dentist said that could have been due to my vomiting frequently during the formative years of my permanent teeth. I've had an acne like rash on my back only off and on for over 20 years, it's barely noticeable now, but we eat low wheat in the house since my husband has wheat allergies. I have been eating more wheat since my son is right now to get proper celiac testing, and my now barely noticeable rash on my back started itching a little bit. I've been anemic at times, but better diet and supplements helped, I 'm not anemic now and haven't been since my last pregnancy 6 years ago.. I have had gallbladder pain off and on (I think is due to sludge) since my first pregnancy 8 years ago (it was frequent with my first pregnancy unless I didn't cheat on a low fat diet, now I just have to be careful to not have higher fat foods too much or I might have a gallbladder attack). I didn't have gallstones 8 years ago , though, just a contracted gallbladder. In recently researching celiac symptoms, I found that the floating stools I have can be a sign of fat malabsorption which can be a celiac symptom, but thinking that could equally be due to gallbladder disease. Since eating less wheat as a family, my husband less than the rest of us, when we do travel and I eat wheat or processed foods for several days, I now get joint aches in both knees and sometimes both elbows. This is just bothersome pain, not real bad, but it does clear up after I get settled back into our whole foods, low wheat diet at home. I would guess if I had celiac as a child I would have stayed sick with the vomiting, and the symptoms throughout life that may or may not be gluten related would have come and stayed or gotten worse. I am thinking that all my listed seemingly temporary symptoms could be unrelated to gluten. Other than the above listed things, I am quite healthy and live a full life. I will know if my son has celiac antibodies in a couple of weeks, if so I will get tested sooner vs. later since I've been eating wheat everyday along with him the past several weeks. But, if his test is negative, I'm not sure whether or not to bring celiac testing up to my MD. I hate to tell the MD too many symptoms since she will encourage me to have my gallbladder removed, and I want to try to save it with a better diet if at all possible. It would be nice to know from those who have celiac if their symptoms came and went mildly through the years, or do the symptoms stay once they show up until a gluten free diet is started. TIA.
  6. I do a similar smoothie to Cara above,...with milk substitute, a few spoonfuls almond butter or peanut butter, tsp of vanilla, 2-3 dates, 2 Tbsp cocoa powder, a large banana, a little bit of flax seeds or chia seeds, and ice. Blend in a powerful blender. This is what we drink instead of traditional chocolate milk.
  7. I have no celiac info. My 7 yo son will be retested soon, because he wasn't eating enough gluten for the 1st test to be accurate. Within 2 days of my son eating wheat 2 meals/ day (prior ate wheat only a few times/week since I cook wheat free for my husband), my son got very very hyper. It was like he was on steroids. I homeschool, and couldn't even do his school lessons a couple days because he couldn't focus. He was very hyper and over emotional. I looked up about it online and found out gluten free helps ADD in some cases, so I have concluded gluten vs. ADD may be a problem with many children. I emailed the doctor about the hyperactivity, but I don't think he thinks it's gluten related. The MD just suggested I back off on the amount of wheat exposure. I started giving my son wheat just one meal/day, and my son has calmed down a lot. Also wanted to mention that my son had occasional night terrors from age 2-6. The doctor told us back then about being over tired being a cause, and my son had the night terrors more if he skipped a nap or went to bed later than usual. I always thought it was strange because night terrors are so rare. I recently googled night terrors and celiac, and found out several gluten intolerant people had nightmares, night terrors, or sleep problems prior to dx probably due to the body overworking to digest gluten. That makes sense to me. Sorry I can't give you experienced info about celiac, and we're not convinced our son even has celiac. But wanted you to know the ADD like behaviors is a valid red flag for you to think celiac related, even if it turns out to not be the reason...especially with family history. In my recent research about celiac, I read that if one family member had celiac, all first degree relatives were supposed to get tested. Therefore, I don't understand why your 1st doctor (the one that was rude to you), wouldn't have tested for celiac based on family history alone.
  8. P. S. to kb27, I would LOVE it if my son makes it to 50 pounds by the time he is 8.5!
  9. Great insights parents. I think we have a wonderful pediatrician, the only thing he faulted on was not asking how much gluten my son ate before running the 1st celiac test. The MD mentioned when he called the first result in that the celiac test was negative (at the time I didn't know a single antibody test was the basic screening), but when my friend encouraged me to tell the MD about our less than normal wheat intake in the home, the nurse said the MD was going to do the entire celiac panel when the hematocrit for iron level is retaken next month. If the whole panel is negative, I will feel more secure about celiac not being the issue vs. if only the single basic antibody test I read about was ordered. My GI nurse practioner friend did say her cover doctor is seeing more gluten related illnesses, rather celiac or sensitivities, so if our son's test is negative we might do a gluten-free trial for a few months just to see if ds gains weight or has less sinusitis or asthma flare ups. She said we should know within a few weeks if gluten sensitivity was an issue or not. I have consoled my worrying in knowing that in the less than a month I will know if the iron supplements are improving his hematocrit, and I will know for sure if celiac can be marked off the list as a possibility. Also, it is highly possible my son is just slow to gain weight but it's no problem. It sure would be nice to just see the MD for an annual well visit where nothing shows up as a concern, or for my son to have a virus that doesn't turn into something like pneumonia or synovitis though! My daughter rarely has a sick visit to the doctor, and she bounces back to normal after a virus quickly. She's 2 years younger than my son, and people have often asked if the two kids were twins! I am thankful this website forum exists for support, questions, and advice. If my son's antibodies are positive, it is great to know I already have a good friend, family, online, and community support system in place to help my son get healthier.
  10. My 7.5 year old may not have celiac. His test was negative, but I didn't know my son was supposed to eat the normal US diet amount of weight daily for an accurate test and the doctor didn't know to question me about our home diet, he thought we ate typical American food, but I fix a lot of wheat free meals because of my husband's wheat allergy. My son ate wheat a few times/ week, so I didn't think that would matter for the test. Now that I found out about needing to have more gluten intake for a positive antibody test and emailed the doctor about our unintentional wheat limitation in our son's diet, the MD is going to do a celiac panel next month after my son eats a "regular" wheat containing diet. My son's weight was 41 pounds over a year ago, went down to 39 pounds after a winter of asthma flares (got tested for Cystic fibrosis back then, was negative), then after 2 months on an antihistamine that helped increase appetite as a side effect, gained weight again up to 43 pounds. That was May. Now he weighs 41.6 pounds on the same scale, was 41.4 pounds 3 weeks prior when he was being treated for walking pneumonia. His thyroid labs, stool samples, and sed rate all look great. His hemoglobin is good, but his hematocrit was around 33, a little low. He eats a great healthy whole foods diet full of lots of high iron foods from meats, nuts, green leafy veggies, and much more. He doesn't drink milk and drinks water or whole fruit smoothies instead which would help iron absorption. Md started him on iron supplements and will recheck hematocrit next month, along with the celiac panel I was naive about when the 1st test was done. MD and hubby don't really think my son has celiac, thinking the MD is just ruling it out to cover all his bases. But I am suspicious. However, eating a regular wheat diet for 2 weeks now, my son doesn't seem sick at all, just hyper from all the sugar in the wheat I suppose. I would think if he had celiac, he would start to have GI issues after eating larger amount of wheat (about 2 servings/day of whole wheat). I also would think his weight wouldn't go up and down, I would guess he would loose weight and continue to loose. I can't explain the slight anemia unless it is true that some kids without malabsorption problems can eat a great diet and still have slight anemia. Son's height growth seems normal over the past couple of years. Was weight loss or anemia in any of your children more subtle or was it drastic? I asked a similar question on the prediagnosis board, but got no replies to the specific question about weight loss and anemia. I would think these symptoms would vary in children vs. adults.
  11. Thank you for the reply, it is very informative. I read the IDA link. I am thinking his iron level would be low due to malabsorption. I can't recall that my son had EB virus, although he did have a couple sore throats with a slight fever a couple of times as a toddler (strep negative). I will keep that in the radar. Thank you for taking time to read my post and offer information.
  12. My son got tested for celiac due to problems with weight loss and not gaining weight over the past year. A year ago he went from 41 pounds to 39 pounds from fall-spring. His asthma had worsened beginning that fall, so when the MD noticed the weight loss a CF test was done that was negative. 2 months later after eating a higher calorie diet, my son weighed 43 pounds and we were all happy. My son had gotten synovitis from a virus the year prior, and my only concern after that was he started getting pain in other joints than the hip when he got a virus. His labs for rheumatoid arthritis were also negative. My son's virus 3 months ago ended with pain for 1/2 day in his elbow and shoulder and later that night my son complained of having stiiff fingers on one hand he couldn't move for a moment. My son said his toes did the same thing and he didn't like it. Since that virus, he hasn't had that problem. One month ago, my son got a virus with a fever, after 2 days he had a severe asthma flare and we had to rush into the MD office (would have gone to the ER if it was at night). Turned out being pneumonia. My son only weighed 42 pounds at the first visit that week, but the nurse and mD weren't concerned because he'd been sick a couple of days. 2 days later he went back to the MD for a fever and on the same scale he weighed 41.4 pounds. The MD asked me to bring him in for a weight check after he was fully recovered and eating normal for a few days. Over 2 weeks later and eating lots of good healthy food with healthy fats and a little junk at Christmas, he only gained 2 ounces. The MD says he might be a skinny kid, but due to a family history of autoimmune illnesses, he wanted to run lots of lab work to rule out a few things (thyroid and celiac being 2 of them, his stool samples were fine also). All I knew about celiac testing was that one had to be eating gluten before a celiac test was done. My husband has a wheat allergy, so for 3 years I routinely make wheat free meals. I keep wheat bread in the freezer for the kids, and they do eat it a few times/week, also lots of wheat when visiting someone else and eating out. We eat mostly whole foods, and lots of fruits and raw veggies (green smoothies with spinach, kale, chard, etc....) because I am trying to get my son healthy. When the MD mentioned celiac test, I did a quick run through in my head of all the extra bread and cake my son ate during the holidays, the whole wheat tortillas wrap he ate that morning, and how he ate the Ezekiel bread several times over the last month. So I didn't tell the MD he eats less wheat than the average US kid. Labs came back celiac negative and all other tests okay, only a mildly low hematocrit. The MD told me all the high iron foods my son should be eating, and I told him how much nutritious foods he eats each day...lots of raw nuts of various kinds, green smoothies, we purchased a juicer when he got pneumonia and giving him straight carrot juice with greens or beets once/day, lean beef a couple times/week, black beans made from scratch a couple times/week, lots of raw spinach salads, etc....MD just said he wanted my son to take supplements and have his hematocrit/iron level checked in a month, he expects it to be higher after supplements. I'm thinking my kid shouldn't have low iron, even mildly low (hematocrit around 33) with his diet. Then, my friend with celiac who knows we eat wheat free often and I rotate grains told me my son's gluten intake may not be high enough to pick antibodies. I told her all the wheat intake, and she said the mD should know I give my son wheat free pastas and breads just as much as wheat . So I humbly emailed the MD, and now the MD wants repeat the celiac panel in a month after my son eats a regular wheat diet (whatever that means). My son got extremely hyper, like he gets when he takes steroids for asthma, after a day eating wheat with most meals. After 3 days of the hyperactivity, I emailed the doctor to ask if my son was having a reaction to wheat and should I be concerned about him getting sick continuing to eat extra wheat. The doctor replied to back off wheat, he's not concerned about a false test, just wants my son to have some exposure before testing. I'm so confused! I feel like a hypochondriac mom. My husband and I are thinking the first celiac test was accurate, and expecting the next to be negative since I never took wheat out of my son's diet. Also, I would think once my son started loosing weight last year, he wouldn't keep regaining it and loosing it, and regaining again. I would guess he would slowly or rapidly steadily loose weight with each weight check. Was my friend right that my son may not have had enough wheat being that he eats less than the average US kid, even if he ate wheat every 2-3 days on average (sometimes everyday, and a few times a year he eats regular white bread most meals at grandma's or camp)? Would anyone expect a 7 year old child's iron level to be low if the child eats lots of high iron foods, doesn't drink milk, and eats lots of high vitamin C fruits and veggies throughout the day? If my son didn't have pneumonia twice in his life, didn't get joint pains with some viruses, didn't have night terrors as a toddler and preschooler, and if he wasn't the DNA replica of his dad who has had a major autoimmune illness as an adult and lots of inflammatory conditions including food allergies I could accept the Dr.'s assessment that I just have a skinny energetic child with a high metabolism. Thoughts anyone?
  13. I am brand new here and had my son tested for celiac a couple of weeks ago. My husband has a mild wheat allergy, so for years we haven't eaten many wheat. Loaded meals. I've always given the kids a whole wheat sandwich or toast a few times/week, we eat a meal with regular wheat about once/week, and my son eats regular white bread and cake once in a while at a restaurant or grandma's house. Never had a problem. I knew you had to eat wheat for a celiac test, but didn't know it had to be daily in more than small amounts. So when the MD ordered the test, I didn't mention a low wheat diet in the home because I thought he would have asked how much my son ate if it would hinder the test. Thankfully my ston's test was negative, but his iron was a little low (even though we are health nuts who eat lots of high iron foods and little junk). I later find out from my friend with celiac that she had to eat a lot of gluten before she tested positive. So I emailed my doc, confessing my ignorance about celiac testing (even though he shouldn't assume every kid in his office eats lots of wheat everyday....I LOVE the doctor otherwise). The doctor emailed me back quickly asking me to put my son on a "normal" wheat diet. (Guess it's abnormal to alternate grains) . He is going to repeat the full celiac panel, in a month. Meanwhile, for the 1st time in my son's life he is reacting to wheat with high energy, exactly the way he acts when he has to take steroids. I have an email out to the doctor about that now. So in answer to your question, I would think you had to eat the typical Western diet amount of wheat (which I don't think is healthy with or without celiac) for a few weeks if at all possible. My son also had eaten more wheat the week of Christmas, which was another reason I didn't think the gluten levels would be too low for an accurate test......his possible false negative test was a week after Christmas.