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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 jplain

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  1. buckeyenc5, I've been thinking about the way you're describing the situation, and I'm concerned that you aren't asking your daughter's caregivers enough questions. If they aren't giving you the information you need, you must make them continue the discussion until you are satisfied. You mention that you took her off pancreatic enzymes, but it isn't clear whether that was with our without medical advice. Was that discussed with your daughter's doctors, or did you at least inform them of your decision? Similarly, I'd be curious to know what plan of action your new GI has outlined. At least give this new doctor, who did bring the biospy to your attention, a chance to provide care to the best of his abilities. If you don't agree with his approach, fine, move on. But at least communicate with him before giving up on him. My child has multiple severe food intolerances (milk, soy, egg, and others), so it isn't at all clear if celiac will turn out to be the answer. She seems to be accumulating new intolerances (or possibly true allergies, not sure yet) over time, which doesn't necessarily fit with celiac. It fits a little better with the "atopic march." Wheat was the next major antigen to eliminate on a trial basis, but I figured why not eliminate all gluten while we're at it? And don't forget, putting her on a gluten-free diet combined with a careful food/symptom diary is a form of testing. Most people here are pretty sure they're celiac or gluten intolerant. You already have your answer, but it is important to keep in mind that not everyone who ventures to this forum is going to have the same answer. And while Green says 97% are undiagnosed, that does not mean that everyone with suggestive symptoms is celiac. Respectfully, I know it can be hard to stay objective in a community where most, if not all, are affected by the same disease. Another blood draw before going gluten-free, which is what I suggested, is relatively easy and not too invasive. What's so terrible about allowing the new GI a chance to help them figure this out? I'm not talking about "pacifying" a doctor. I'm talking about working cooperatively. That doesn't mean allowing the doctor to call all the shots. It means working with him to decide on the best course of action. Everyone benefits from that. I'm aware that many of the posters here have had bad experiences with caregivers, but that's not a good reason to project those experiences on others. Not having an answer is fine when you have a 2 year old, because you get to decide what she eats. But as many of you know, even with a diagnosis it isn't so easy when you have a 9 year old who deliberately cheats, or a 12 year old who just wants to fit in, or a teenager who thinks he's invincible. Wouldn't it be better to pursue diagnostics *within reason* before going gluten-free, instead of having to deal with major health consequences later when an older child or young adult decides to go off the diet? By *within reason* I don't mean repeat the biopsy, unless they screwed up and didn't look for eosinophilic disorders. I mean repeat the bloodwork, re-test for allergies (IgG and IgE), and consider Enterolab testing if finances allow. I think this will be my last post here. It seems as though any suggestion to stay open-minded about whether or not gluten is the problem is not welcome here, even in the pre-diagnosis stage when things like eosinophilic disorders and allergies have yet to be ruled out. That's a shame, because I think we all have the same ultimate goal ~ optimal health.
  2. Speaking as a scientist rather than as a mom, there's simply not enough information in this thread to form any opinion as to whether or not this child has celiac disease or gluten intolerance. The symptoms described (behavior, belly distension, skin issues, FTT, frequent stooling, low muscle tone) fit pretty darn well with celiac, but they also fit with other possibilities too. And believe it or not, there are other conditions that mimic the damage celiac dz can cause microscopically, and many of them are not uncommon in young children with a FTT presentation. Here's a link to an article that has a brief mention of this subject: Celiac Disease: A Progress Report. Read the section at the end titled "Differential Diagnosis." If her blood screen was positive and biopsy inconclusive, that would probably be enough for me as a parent, and quite possibly enough for me as a scientist. But the original poster said the initial celiac screen was negative. That's not at all surprising, given her age, but it leaves a lot of room for doubt. The comment from her gastroenterologist that the biopsy was not quite normal, that there was some damage, is not enough to conclude that she should be on a gluten-free diet. In this situation, I'd want to go over the pathology report point-by-point, ideally with the gastroenterologist. I'd want to know the details and Marsh scores of each slide evaluated. Was there an increase in intraepithelial enterocytes? If yes, has H. pylori been ruled out as a possible cause? Is there increased cellularity in the lamina propia? Is there any degree of villous atrophy and/or crypt hyperplasia? If I wasn't satisfied with that conversation, I'd ask for a second pathologist to look at the slides and provide a second opinion. Now before any of you get upset, let me make it clear that I certainly wouldn't discourage this parent from putting her child on a gluten-free diet. Heck, I recently put my own two year old on a gluten-free diet, and didn't bother to pursue diagnostics first. But as this child is already being seen by specialists, going gluten-free without trying to get more answers first might cause friction with her caregivers. It is worth a phone conversation with the GI, at least. No one needs permission to go gluten-free, and I certainly wouldn't let a caregiver prevent me from doing what I as a parent feel is best. But in the spirit of working cooperatively with my child's medical specialists, I'd want to give them a head's up in case they would prefer to order additional testing before a dietary change is implemented. The possibility of an eosinophilic disorder should be discussed specifically, as they are much less rare than previously thought. There's a whole subforum on eosinophilic disorders over on Kids with Food Allergies, and the small annual fee to access the forums is well worth it just for the recipe database. If she hasn't yet been tested for food allergies and/or intolerances, that's another major oversight. A trip to a pediatric allergist would be another reasonable course of action, and again, Kids with Food Allergies is a great resource for information on testing and treatment.
  3. ((HUGS)) What was the basis for her FTT diagnosis? Aside from (I'm assuming) slow or no weight gain, what are her observable symptoms? How are her skin (what do you mean by "yucky"?), stools (what do they look like, how many per day?), sleep, and behavior? Does she have reflux, or often spit up/vomit? Chronic runny nose? Dark circles under her eyes? Does she often come down with viral illnesses? Have you noticed whether any specific foods seem to worsen her symptoms? What are her favorite foods/drinks? What foods/drinks does she dislike? You mention duodenal ulcers, so I assume there is something awry. But what does your mommy instinct tell you? Is she a sick kid, or just a little/skinny one? How is her development (speech, motor)? What about her overall demeanor? Cheerful, active, playful? Tired, quiet, moody? Kids can be a handful when they're between 1 and 2, because their desires are bigger than their abilities, but there's also a point at which you can say, "Okay, this just isn't normal." (Oops, I see you've answered some of this in a post a few up. I'm curious to know how/if allergies have been evaluated as a possible cause...have you seen a pediatric allergist?) When she had her biopsy, was she also evaluated for eosinophilic disorders? More info on those here: http://www.apfed.org/ Has she been tested for food and environmental allergies? If so, which types of tests? (IgE, IgG, skin testing) She's been through so much, and I imagine that her caregivers aren't going to stop looking for a cause anytime soon. If you take her off gluten before giving them a chance to re-evaluate her for celiac, they may ask you to put her back on gluten later, which you may be reluctant to do if you've noticed significant improvement. In your situation, I probably wouldn't put my child through another biopsy unless they screwed up and didn't evaluate her for eosinophilic disorders. HOWEVER, I'd ask for the full celiac blood testing panel to be re-drawn, and as soon as it was drawn I'd start a trial gluten-free, dairy/casein-free diet. During that trial I'd keep a full food/symptom diary with information on appetite, sleep, stools, behavior, etc. That way, if the blood panel comes back negative, but you feel going gluten-free has helped her, you'll be able to show a record of observations to her caregivers. If blood work comes back positive, I'd simply accept that as the answer, and decline a repeat biopsy. If it came back negative, and if our finances allowed, I'd consider ordering Enterolab testing. As a stool-based test it is non-invasive and many people here have been very happy with the information they got. Good luck and many hugs to you and your daughter!
  4. Does she play with playdough at school? That would expose her to gluten. Good luck figuring it out!
  5. Yay for her height and weight stats ~ those are fantastic! And oh how frustrating 3 year olds can be when they decide to exercise free will. Well, hopefully she'll learn a lesson out of it!
  6. Ate 4 Samoas...

    You mean Samoas (Girl Scout cookie time!), right? Those definitely contain gluten.
  7. Has he or anyone else in the family recently had a virus? Post-viral arthritis is one of the most common non-injury causes of limping in children. My older daughter once had it for a few days. She had no symptoms of a virus, but her dad had been knocked out by a virus the week before. Our ped said her temporary arthritis was probably part of her immune response to the same virus.
  8. I think the Mi-Del cookies are the closest substitute, but as Linda said, they're not teething biscuits. In my opinion, teething biscuits are a choking hazard anyway, so it is no loss if you can't find a gluten-free substitute. After being gummed for a while, usually a big piece will break off in baby's mouth, and it can cause choking. The second time I gave one to my older daughter she choked on it: eyes bugged out, turning purple, every parent's nightmare. I was lunging for the scissors to cut the straps of her high chair when she finally coughed it up. And I know our experience is far from unusual. My husband now refers to them as choking biscuits.
  9. I can relate. I'm gluten-, dairy-, egg-, and soy-free for my breastfeeding two year old, and I've dropped down to a weight I haven't seen in at least 18 years. A couple weeks ago I was feeling bus-dragged too, but I'm feeling a lot better now. I think it is partly that I'm eating a lot more and partly that I'm being diligent about taking my supplements. You must eat more! Brown some ground meat and season it and snack from it all day. Put nut butters on rice cakes or corn tortillas. Snack on hummus and chips or raw veggies. Roll up slices of cold cuts and/or cheese and eat straight out of the fridge. Make a big pot of rice and re-heat as needed. Use leftover rice to make stir fries (get wheat-free tamari soy sauce) or rice pudding (add nuts, fruit, milk, sugar and heat). Avocados and coconut milk are excellent sources of good fats. Rice made with a mixture of coconut milk and water is delicious. Make a pan of Pamela's gluten-free chocolate brownies, and finish it in one day (why yes, I have done this). What supplements are you taking? Take a good prenatal every day, without fail. Consider taking a daily sublingual (under the tongue) vitamin B12 supplement unless you're certain your B12 level is fine. Essential fatty acids and probiotics are a good idea too. Go to bed with the baby in the evening ~ I still do that most nights. Yes, it feels weird to have an 8:00 bedtime, but my body needs it. If you're getting out of bed several times a night to nurse, consider co-sleeping (with safety precautions, check Dr. Sears' website for details). That can increase the amount of rest you get since you don't have to get up and down all night long. Are you nauseated when breastfeeding, or all the time? If it is just when breastfeeding, you're probably one of those lucky people who get nausea when oxytocin levels go up. Fortunately, that seems to decrease over time. Hang in there, and good luck!
  10. Glad you posted this ~ I was just coming to look for the topic of appetite increase. On a hunch, I put my 24 month old egg-, dairy-, and soy-intolerant daughter on a gluten-free diet a week ago. The change has been remarkable. Now she can't stop eating...or pooping. But at least it is much nicer poop than before going gluten-free. At this point we don't plan to get her officially tested. I'm comfortable making this decision without antibody testing, especially considering the very high rate of false negatives in young children. A biopsy is out of the question ~ I personally feel it is too invasive for such a young child and too often inconclusive. I also have concerns about how the current U.S. health insurance industry treats those with pre-existing conditions. Perhaps I'm being over-cautious, but having experienced job instability in the past year, this is where my comfort level is right now. If an official diagnosis would mean access to pharmacologic or other treatment modalities, it would be a whole 'nother story. However, since the therapy is dietary, I don't feel we need medical approval to trust the changes we see in her diapers and behavior. But everyone is different. If it would put your mind at ease to have an official diagnosis, go for it! Before you do, think through how you'll handle it if the test results are negative. I probably will order Enterolabs gene testing for both my kids and myself though, just for our personal information. It might help us decide whether or not all of us should also be on a gluten-free diet. I realize that since the allele frequencies are so high, it is unlikely that she'll end up having zero celiac or gluten-intolerance alleles. I figure that saying she carries one or more alleles should be enough to silence any pesky skeptics. Good luck!