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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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere 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 w919oct

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    1. w919oct added a post in a topic Middle School Cooking Class   

      Leaning how to bake gluten free is an important exercise for all Celiac children, so I believe this is an excellent opportunity for him to learn how to accommodate himself in such an environment. Additionally, you should recognize this is a superb opportunity for the OTHER students to learn about food intolerance and allergies.

      Just remember it's probably more than likely that the curriculum has been adjusted to assure a peanut free environment, so you can and should expect them to accommodate your situation as well. Many of the gluten free flours out there can be used for cup-for-cup wheat flour substitution. While I agree the whole class shouldn't be required to follow gluten free food preparation, the class should be stocked with gluten free flour and xanthan gum for your son.

      I remember making many gravies in high school cooking classes. Ask the teachers to switch to corn starch, which I personally believes makes for a better gravy anyway.

      The teacher should be responsible for overseeing hand-washing, which is an important step to teach to all cooking students regardless of allergies. Proper food preparation cleanup is also something that should be included as part of cooking class instruction.

      My opinion -- for what it's worth. :-)
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    2. w919oct added a post in a topic To Challenge .... Or Not To Challenge?   

      I most definitely will! For now, I will tell you both physicians we are currently seeing did tell me where their heads are at the moment (after much prodding from me; I am very good and getting doctors to share their hunches with me with the full understanding it is subject to change). Both believe they are looking at possible Crohns with gluten intolerance (most likely non-Celiac), as Crohns does run on my side of the family and we just learned that non-Celiac gluten intolerance runs on my husband's side. The two are apparently closely linked and exacerbate the symptoms of each other, which would explain why they are so severe and autoimmune-like in nature.

      What they disagree on are next steps. Pediatrician believes if it is Crohns, it will appear on its own someday despite the gluten-free diet, and would prefer not to expedite its onset by doing a gluten challenge because he has done so well on this diet. Specialist would like to know if it is Crohns so we can better target his dietary needs (which would include a lot of vitamin supplements), as she is concerned his weight and growth seem to have plateaued recently. So that is where we are now. I decided to take pedatrician's advice for now (thanks to some great feedback from this site), and will touch base again if anything changes.

      Please keep in touch, and good luck.
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    3. w919oct added a post in a topic To Challenge .... Or Not To Challenge?   

      You can tell that woman at the office that while my son had a cornucopia of symptoms related to Celiac since birth, the "kicker" that sent us into a frenzy was that he had started to show signs of diabetes -- wetting himself, excessive thirst, malabsorption, diabetic-type "zone outs," etc. Celiac causes diabetic symptoms, in addition to all of the others splattered all over this website.

      In fact, the very day I heard the word "gluten' for the first time was when I just crashed the doctor's office without an appointment when he was experiencing these diabetic symptoms. At the time, he was still in the midst of testing, but I was so fed up and yelled "Do something now and stop testing him - I can no longer watch him waste away." That was the very moment she said, "This is a gluten thing -- I'm absolutely sure of it." My first question was "What the heck is gluten?" but boy do I know now.

      Truth be told, the very reason I want firm answers is because I do incorrectly use the word "celiac" to describe his condition, even though all evidence suggests he does not have villi atrophy. However, if you say "gluten allergy," someone will try to stick him with an epipen if they believe he's been glutened (yes, we had a close call on that once). If you say "gluten intolerance," you get a lot of unsolicited feedback from folks who are simply doing gluten-free because it's the newest health craze. I'm getting just as frustrated with that, as well as having to fight my way through to the gluten-free shelves at Wegmans on the weekend.

      I would never downplay anyone's health condition, but like you, I'm getting very frustrated when people compare what I perceive to be a better accommodated, more manageable and more widely recognized illness to what my child has. Let's face it, only we know what we've been through.

      Good luck. I've been there too.
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    4. w919oct added a post in a topic 8 Year Old Sneaking Food With Gluten In It!   

      Hi. My 8 year old son has been gluten-free for 4 years, my husband just went gluten free a year ago, and my daughter and I are what you call "low gluten." So, I feel your pain, but will enthusiastically tell you that you that we've been able to get through it, and I'm absolutely sure you can as well.

      First rule -- You need to experiment with every single gluten-free brand out there to discover her faves. Here are some of our favorite carbs that you may want to try to help your daughter forget about wheat once and for all --
      Udi's White Bread, Bagels, Muffins, and Pizza Crust, Tinkayada Pasta, Snickerdoodle Cookies, and Dr.Schar's rolls and italian bread (pizza crust is pretty good too).

      Dinner -- Quite frankly, even before the gluten issue, my son always preferred fish and meat to pasta, so dinner time hasn't really been an issue here. However, we ALL love Bell and Evans Gluten Free Chicken -- best frozen chicken products on the market -- gluten and non-gluten. We also make MUCH mexican -- fajitas with corn flour tortillas and tacos (all Old El Paso products are gluten free). At any given time we have fresh salsa and tortilla chips in the house.

      I make a lot of fried rice and use San-J gluten free soy sauce, which actually tastes better than the cheaper wheat-based soy. (Note -- PF Changs actually offers the gluten-free soy option now as well).

      Baking -- The Betty Crocker gluten free products are great, and my son prefers the Pamela's Pancake Mix to the other brands. For scratch baking, use nothing else by Authentic Foods Multi-Blend Gluten Free mix. Expensive, but worth it because you can use it cup-for-cup in any recipe that calls for gluten (though some require a little extra xantham gum). We use it in the Nestle Tollhouse Cookie recipe, and I swear the only difference between them and those made with traditional flour is that they are slightly grainier, and they do tend to go stale faster. In my homemade chocolate cake and cupcake recipe, there is absolutely no detectable difference.

      My daughter and the neighbors kids all love the gluten-free brownies by Foods By George(frozen). Their frozen pizza isn't half bad either.

      If that doesn't cure her craving for wheat, I don't know what will! Good luck -- 8 year old girls are tough even when they aren't gluten free! :-)
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    5. w919oct added a post in a topic To Challenge .... Or Not To Challenge?   

      Oh gosh, I was so you 4 years ago. Your kid is sick, and no one is disagreeing with you but no one is giving you any answers except "It's not this nor that, but keep him off gluten and see how he does" and you grow so resentful towards the entire medical community because they don't treat this illness with the same verve as other food-related illnesses. After time, I began to realize that this was because the doctors themselves aren't sure of the long term effects of gluten intolerance and could not give me firm answers to my ever-growing list of questions. Doctors just don't like to say "I don't know."

      You're son will get better on a gluten-free diet, trust me. We still get the purple circles under the eyes every now and again (I believe when he's been subjected to cross-contamination), but the stools are much better. While my son did get health-i-er when we first initiated a gluten-free diet, the full improvement we see today did not happen overnight. The developmental catch-up and improvements to his blood count did take a bit of time -- about 2-3 years. In fact, it was just this year is when his teacher "officially" stated that he should no longer be considered behind academically because he was testing at an advanced level on his Stanford Achievement tests. His pediatrician credits his steady improvement over 4 years time to a sustained gluten-free diet with no cheating whatsoever. I'll admit the trips to the bathroom still aren't pretty (that is why they continue to cite Crohns), but is does continually get better with time.

      What you stated about the research from Italy -- that is exactly why I chose the Celiac Research Center in Baltimore, as much of that research is being conducted by Dr. Fasano from Naples. He runs this particular clinic, though he does not see pediatric patients any longer -- we visit another doctor in the practice. I do like the group, however, because they are a research center they do advocate testing.

      Good luck with your own health. I don't have Celiac but am a fellow sufferer of an autoimmune disease, and know first-hand that it's hard enough to deal with your young child's ill-health, but even more difficult when your own health issues are bringing you down. Take care and stay strong!
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    6. w919oct added a post in a topic To Challenge .... Or Not To Challenge?   

      OMG we must have the same doctor!!! I've been down the same path as you with the potential Cystic Fibrosis and Crohns. In fact, his Cystic Fibrosis test was almost borderline positive, but he has no issues with congestion so they concluded the issue was with the test results.

      Interesting to note to all -- I did ask two of the gastros we saw if we were possibly looking at a potential "disease to be named later" (meaning a variant form of gluten intolerance that does not affect villi but causes other severe neurological and autoimmune reactions to gluten). Both said that was very possible because there is still so much we don't know about gluten intolerance. This last gastro at the Research Center said they do not even have evidence that this particular form of gluten intolerance is any less dangerous than traditional Celiac disease. Two of the gastros we saw did believe a colonoscopy would probably be more informative in our case than an endoscopy. Now that he's 8, I really have no issues with the colonoscopy (wasn't willing to do it when he was 4), but I do object to making him sick before he gets it (which both gastros wanted us to do). If I found a gastro that would do it without the challenge, I'd probably go ahead with it.

      One of you asked if it has been a problem at school. Because of my son's slow motor skill development (which was attributed to the gluten intolerance), we decided to enroll him in a private school, and quite honestly that was the best decision we ever made. He had individualized attention, a small class, and caring class moms who have even called me at work while chaperoning field trips to verify which snacks they could and could not purchase for my son. For the record, he is now 8 and and advanced academically,plays sports, is no longer anemic, and is actually in the 50% now for growth (he was like 15% previously).

      However, my big pet peeve (and forgive me if I offend anyone here) are the peanut allergy moms who tell me I'm "lucky" because at least his food intolerance is not life threatening. Forgive me, but I myself have never heard of a child who has complained because they cannot eat peanuts, shellfish or soy. Many of these moms simply cannot appreciate what it is like for a child to be deprived of cupcakes, pizza, and bread, and know its going to be that way for the rest of his/her life.
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    7. w919oct added a post in a topic To Challenge .... Or Not To Challenge?   

      I just got home from work and am teary-eyed from reading through all of your responses. Sometimes it is just such a relief to hear that other parents have struggled through the same heart wrenching decision as we are facing. Bless you all for sharing your stories.

      Yes, my pediatrician is amazing, and the three gastros we've visited all comment how impressed they are that she was so quickly able to link his seemingly nondescript symptoms to gluten intolerance. I do think one of the reasons the specialists seem to push us in the testing direction is because they themselves are intrigued by the severity of his symptoms, all of which disappear when he remains gluten free.

      Again, much thanks for leading me to the right decision!
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    8. w919oct added a topic in Celiac Disease - Parents of Kids or Babies With Celiac Disease   

      To Challenge .... Or Not To Challenge?
      Looking for input from parents who've "been there."

      Four years ago, my son came down with what I thought was a virus that resulted in a 6 lb weight loss over only two weeks time. Because of the urgency of the situation, I wasn't willing to wait for the test results to come back before taking action and quickly reacted on our pediatrician's suspicion that my 4 year old son was suffering from Celiac Disease by immediately initiating a gluten free diet. The results were immediate and dramatic, and not only for those symptoms he was suffering at the time, but for the many gastrointestinal and neurological symptoms he suffered from since birth. The blood test results came back negative, however, by that point no doctor could convince me to resume a gluten free diet despite what any test results said. I even refused to challenge him for his follow-up endoscopy 3 months later, so of course the test did not confirm Celiac Disease. However, by that time I did not care, because my son was finally healthy, happy, rash-free, and growing at a rapid pace for the first time in his life.

      It is four years later and my son is now 8 years old, and for reasons too lengthy to explain here, we thought it might be important at this stage in his life to confirm a diagnoses. I brought my son to the Celiac Research Center in Baltimore, where they conducted genetic testing which came back negative. Believing that was conclusive that my son only had a gluten intolerance rather than full-blown Celiac, I initiated a 3 day gluten challenge before his appointment so the doctor could evaluate his symptoms first-hand and discuss other diseases he could have that respond favorably to a gluten free diet. This turned out to be a very bad decision on my part, as he developed a fever, eczema, diarrhea, ataxia, and joint pain after only two slices of pizza over two days. The doctor immediately confirmed gluten intolerance based on a physical examination alone, and stated that son might either have Crohn's Disease (which does respond favorably to a gluten free diet) or be one of only a very few who has a form of Celiac that isn't linked to a genetic factor. In any case, the gastro specialist recommended doing a 3 month gluten challenge followed by a colonoscopy (to evaluate for Crohns) and another endoscopy (to conclusively rule out Celiac once and for all).

      My pediatrician strongly disagrees with this recommendation, believing if it is Crohns it will appear on its own someday without the aid of gluten, and that first and foremost our goal should be to keep him in remission as long as possible, especially because he is still underweight and small for his age.

      My son's gluten intolerance is obviously much more severe than the norm, so I'm really at a loss which way I should go with this. Is the diagnoses really that important?

      I welcome any and all opinions about the matter. MUCH THANKS!
      • 16 replies
    9. w919oct added a post in a topic Looking For Experienced Minds -- Does He Or Doesn't He?   

      That is exactly what has been SO confusing for us. My son is DEFINITELY AUTOIMMUNE because he has all the classic symptoms (unexplained fevers, extended illnesses, chronic anemia, abnormal blood counts) PLUS both parents are autoimmune (chronic hepatitis and hashimotos). My son is also definitely gluten intolerant. BUT NO ONE IS REALLY SURE WHETHER HIS GLUTEN INTOLERANCE AND AUTOIMMUNITY ARE LINKED. At this time, his gastro's professional opinion is "probably."

      In any case, the gluten-free diet is definitely helping with the autoimmunity. For the very first time in his 4 year life, my son had a 24 hour virus that actually lasted 24 hours instead of the usual 96. Prolonged illnesses have been his issue from the day he was born. If this wonderful diet is the weapon to help boost his immune system, than anyone can call "it" whatever they want, as long as they don't question the fact that he actually has "it."

      However, this is a very public condition, and it is getting rather confusing to explain our strange scenario to inquiring crowds, so daddy and I are just calling it Celiac, despite the fact that people "in the know" question the results of every single test we've been through. I hate that this condition is the new "hot disease" that everyone thinks they have and knows so much about. It really muddies the waters for my son and those of you who are truly suffering each and every day. A complete breakdown of your immune system when you consume a particular food is a lot different than the occassional tummy ache.

      With regard to my son, we are supposed to have his bloodwork repeated in 3 months. If the anemia is gone, and all other recounts are at a normal level (which would be a first in his life), that apparently will be further evidence pointing to preliminary Celiac.

      Like I said, intolerant or celiac, I don't care. I'm just ecstatic he's better
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    10. w919oct added a topic in Celiac Disease - Parents of Kids or Babies With Celiac Disease   

      Fever When Exposed To Gluten
      My newly diagnosed gluten intolerant 4 year old has suffered from unexplained low-grade fevers his entire life. On Saturday, he was mistakenly exposed to gluten and, in addition to the typical rash and intestinal symptoms, he is also running another low-grade fever.

      Is this just a coincidence or is a fever after gluten exposure normal?
      • 6 replies
    11. w919oct added a post in a topic Looking For Experienced Minds -- Does He Or Doesn't He?   

      I feel for you folks who have infants and young children, and no official diagnoses except a gut instinct. The reason my physicians were able to accept my own gut instinct is because there was a REMARKABLE decline in my son's energy level, temperment, and change in his body physique (he was once a muscular boy in the 90% percentile weight bracket -- now his legs and arms are so thin and he has fallen to the 25% percentile). There was absolutely no denying his health issues. With regards to an infant, I think a doctor would dismiss a parent's complaints of their young child's weight changes, decreasing energy level, abnormal poop, or body changes as a "growth spurt" or "poor food choices" (HOW MANY TIMES HAVE WE ALL HEARD THAT ONE!). However, my son can and actually does say to his doctor "My tummy feels better because of my special food." I think the reason I was referred to a gastro so quickly was because my son was able to communicate his own symptoms to the doctor. An infant cannot do that.

      Our biggest issue right now is the PARENTS! Each time I bring along my special snacks and folks question why I'm doing so, I tell them he is gluten intolerant, and almost everyone replies "Does he really have it -- Was his biopsy positive?" What KILLS ME is that these are the same parents who are radical maniacs about their child's peanut allergies and peanut free households. I never asked them "Was your child's scratch test positive?" At what level was it? Oh, only a three, so I guess he's not that bad after all!"

      My friends believe my son's diagnoses of gluten intolerance is some sort of divine curse put on me by the allergy gods because I made fun of the peanut allergy moms for years.
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    12. w919oct added a post in a topic Looking For Experienced Minds -- Does He Or Doesn't He?   

      To the individual who asked about the itchy rash -- the rash on my son's face resembles acne (which he still has because I tested my wheat-shampoo theory last week), while the one on his torso (which is now gone since going gluten free) looked like chicken pox.

      I just wanted to tell you that I had my final conversation with my gastro and both he and my pediatrician are so pleasantly shocked about my son's complete turnaround regarding his health. Because his symptoms improved so quickly since going gluten-free, that is a very strong indicator of Celiac. His onset was rapid and severe and immediately followed a 24-hour virus, indicating that his immune system is very much involved, which means they believe he does have some sort of autoimmunity. It may be Celiac, or the disease that I or his father has, or a different one. Apparently, autoimmune parents will most likely have an autoimmune child, however, their conditions may be completely different. My son's thyroid was tested, and he was normal. I was tested for Celiac, and apparently I don't have it. Perplexing!

      In any case, the scary hypoglycemia attacks and weight loss are a thing of the past, and I can't think of a better Christmas present than good health. However, his energy level is so insane that I'm considering giving him a piece of bread just so I can get him down for a nap while I get some Christmas cards and wrapping done JUST KIDDING!
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    13. w919oct added a post in a topic Looking For Experienced Minds -- Does He Or Doesn't He?   

      The way I see it, if someone with celiac disease doesn't eat gluten, they do not have a disease (assuming all their symptoms clear up), they are then perfectly healthy.

      I'm not sure I buy that. As a lifelong sufferer of an autoimmune disease myself, I was told I ALWAYS had the disease even if I wasn't experiencing any symptoms. In my case, I was diagnosed with severe hypothyroidism (a condition) in my 20s, and eventually, the hypothyroidism was linked to Hashimotos Thyroiditis (an autoimmune disease). Once I went on medication, my symptoms disappeared, and were kept in check under the watchful eye of an endocrinologist for 11 years. Then, last year for whatever reason, all of my symptoms suddenly reappeared and, to make a long story short, it was decided that a thyroidectomy was my best option. I was told even though I no longer have a thyroid and my symptoms have virtually disappeared, I STILL HAVE THE DISEASE. It seems like the doctors are using the exact opposite scenario for Celiac.

      It is my understanding that an autoimmune disease NEVER goes away -- Fibromyalgia, Lupus, Rheumatoid Arthritis, Graves Disease, and Hashimotos -- are all lifetime conditions and can flare up despite treatment of symptoms. Why is Celiac any different?

      This whole situation is so puzzling to me that my husband and I are considering a visit to the reknown Celiac centers at Columbia University in NY or Children's Hospital Philadelphia to learn more about this condition. With regard to Celiac, it seems we Americans lag far behind our cohorts in Europe.
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