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 FREE Celiac.com 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 Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I totally feel your frustration. Many shampoos have wheat germ or some other gluten . . . my daughter had a horrible reaction for about a month, and we finally figured out it was because we switched shampoos and it was dripping down her face when she rinsed it out. We went back to suave naturals. Is her toothpaste gluten free? During dental proceedures does she make sure she's asking for gluten free products? Malt flavoring is a huge culprit here. What about perfume? Also soaps, lotions, face products, make-up all need to be gluten free too because kids sweat and it can drip onto the lips. Is she taking any meds that could contain gluten? (even most over the counter products contain gluten). We learned this the hard way too. Hope you get it figured out!
I totally feel your pain. Have him try Udi's bread . . . it's the closest gluten-free bread we've found to regular (soft and not grainy like other rice breads). On the bright side, I think it's been easier since we went 100% gluten free in our home. No chance of cross contamination (double dipping the butter knife, etc.)and our daughter feels "normal" when at home since we all eat the same thing now. I have been packing school lunches for the last 4 years now (since I can't possibly trust the school cafeteria with gluten-free foods). I hate that there's not much variety in their lunches throughout the week, but I think both my kids have been incredibly healthy since I started doing it . . . no long lasting colds or flus anymore. . . All the kids who eat school lunches are constantly getting sick, but ours don't. It makes me shudder to think what goes on in the school kitchens.
Actually we were told by a McDonald's manager that there isn't cross-contamination issue . . . he said that big clear spoon with the hollow square end in your McFlurry fit's onto the mixing machine. Every McFurry has it's own stirer. We watched and that seemed to be the case. I would be more suspect of the Reeses Pieces. . . . Hershey has been very disapponting with there gluten-free disclosure.
Hershey now says that all Reese's products may contain gluten...(yes, even the cups) as may several other candy items we once thought safe . . .So beware! They have a Reese's candy bar out now. Outer label is identical to the cups, but on the big ingredient list is wheat flour. They don't, however, list wheat under allergen information at the bottom which most of us have gotten in the habit of reading soley. There, they only mention being processed on a line with almonds. I'm so sick of having to read fine print! If only they all could be like Betty Crocker and post gluten-free right on the front of the box. I LOVE Betty Crocker for that!!!!!!!!
The key is creativity at holiday meals . . . it doesn't necessarily have to be more costly. If you google "gluten free thanksgiving" you'll find tons recipes for the holidays. I personally like the following link:
There are 11 recipes for gluten-free side dishes including traditional favorites like stuffing, green bean casserole. Now that bisquick makes a gluten free mix, a homeade pie crust is easy and pumpkin and sugar is naturally gluten-free:) Homemade whipping cream would also be gluten free!
I hope you have a wonderfully memorable Holiday Season!
First things first, you are Not Helpless in the matter. You are your child's best advocate. Since the biopsy is an ordeal . . .my suggestion is that since your household eating habits are already gluten free for the whole family, make sure she follows the same diet when away from home too(no cheating). Make sure you know her vitamins and meds are also gluten free. If her symptoms stop after a few months of being on a strict diet, you can assume she does have Celiac Disease or a gluten intolerance. I wish I had taken that advice 8 years ago when my daughter was three.
The only conclusive test I know of is an endoscopy, and that would require anesthesia. However, it sounds as though you and your husband are skeptical, and may need a test with 100% accuracy. My husband and I were also skeptical (and we don't even have a history of Celiac Disease or a gluten allergies in either of our families), but our daughter's tantrums were so extreme as a preschooler and early gradeschooler that we were desperate for answers. The endoscopy proved her villi were almost non-existant, so she wasn't absorbing any nutrients and her tantrums were most likely due to the pain she was in from the gluten reaction. Yes, it's a tough diet to follow . . . you've got to read labels on everything (even shampoos and meds). Ingredients are sometimes disguised with unlikely words like "natural flavors" or "modified food starch", etc...to be certain of gluten absence many times you'll have to call the manufacturer.
BUT IT IS SO WORTH IT! Our daughter was diagnosed as a 2nd grader, and is now a different child since going on a gluten free diet. Her immune system is so much stronger now, no tantrums, no stomach aches (except with contaminations), and she no longer looks like she's starved and from a 3rd world country. I would recommend seeing a pediatric gastrointerologist, (I wouldn't bother with a blood test since they aren't always accurate). They'll probably recommend the endoscopy. If that's too scary for you, just try the diet (no cheating) for 6 months. If your 4 year old has it, you will see a change in behavior by the end of that 6 months (if not before).
Good luck and remember there is a huge support group of parents just like you! Your child is worth the effort!
On Tuesday, the gluten-free labeling petition was the #1 most active petition in the U.S. Now we are down to #10 most active and have only 195 signatures . I've got to say I'm surprised and disappointed. I contacted every Celiac organization in the United States(including universities with medical depts. studying Celiacs) on the Internet, and gave them the petition information to pass along. It's obviously not happening. This is a great way to grab the public's attention and show the FDA we are serious about this labeling issue. Unless we have a much larger number of signatures (tens of thousands) they won't bother giving it a second thought. The FDA has never responded back to me regarding what percentage of U.S. drugs contains gluten vs. those that are gluten- free. Why? Because they don't know the answer. If they were to contact a pharmaceutical representative, the representative wouldn't be able to come up with a number either. How do I know? I've called at least 10 manufacturers of pharmaceutical products and none of them have been able to give me a solid answer. Half of those companies couldn't even tell me if the majority or minority of their products contained gluten. Scared? You should be. Tell your friends and other people on this site and forums on other sites that they need to sign the petition so a collective group will hold these companies accountable for what they put in their products! Thanks to all of you who have already signed
Just a thought . . . . are you sure all medicines that your son takes are gluten free . . . including the Miralax? We've found that most vitamins, stomach and pain meds actually contain gluten(they use it to bind togther the ingredients in solid pills and thicken liquids.) If you call the manufacturers directly and they can guarantee no gluten is present, perhaps try giving liquid probiotic acidophilus on a regular basis. Vitamin World brand is even labeled as gluten-free. I swear by this stuff for straightening out intestinal flora (although it won't cure Celiac's, it can stabilize other conditions and it is perfectly safe for kids (even in large amounts)and tastes like flavored yogurt.
I agree, from experience, an endoscopy is hugely traumatic (especially the anesthesia part). If you already know your child has Celiac's, it hardly seems worth the risk of anesthesia . . . just my opinion.
I would guess your child isn't growing, because they are still not completely gluten-free. Accidentally ingesting shampoo with gluten could even do it (try Suave Naturals- they are gluten-free and inexpensive). Keep in mind also, that it takes a while for villi to grow back (at least 6 months), in order for your child to absorb nutrients properly. Our daughter had lingering gluten symptoms for about 8 months after we started her gluten-free diet.
I hope this helps. I feel your pain . . . been there. . . . still am from time to time.
Good luck and never give up being your child's best advocate,
I know you probably feel like one of the unluckiest people in the world right now, having a one year old diagnosed with Celiacs. In reality, you and your child are so lucky they discovered it so early. We spent the first 7 years of our daughter's life in the pediatricians office on a regular basis and even took her to psycholgists and psychiatrists because of the extreme behavior problems that resulted from her gluten allergy. We had one psychiatrist tell us she was certain our daughter was bipolar; Easter Seals thought she was autistic. Her endoscopy diagnosis changed our lives for the better. After 6 months of being gluten-free, Leah was as normal and intelligent as any child could hope to be. I'm not going to lie to you . . . the diet is soooo hard, because of the lack of labeling. I'm so grateful when a company volunteers to label their products as gluten-free.
To add to your food staple list:
Bisquick now makes a gluten free baking mix--it just came out a few weeks ago . . . it's great and not nearly as expensive as some of those other gluten-free brands!
Chef Boyardee has A RICE W/ CHICKEN AND VEGETABLES single serving bowl that's pretty reasonable--it's made by Con Agra, and they label allergens(plus we called)
Yoplait yogurt labels the flavors that are gluten free
Buddig lunch meat and Hormel now will label if they're certain a product is gluten free
Kraft also lists allergens most of their products are gluten free
Progresso soup now labels when something is gluten free (their lentil soup is very good)
Go to Betty Crocker's website to find a list of their Gluten-free products--they've made a huge effort to accomodate gluten allergy sufferers
Good luck and never forget that you are your child's best advocate!
Hi everybody! I was hoping you'd take a second to go to the link below and sign the online petition I created to mandate pharmaceutical companies to label their products as "gluten-free" or "containing gluten". For those of you who are new to the world of Celiac Disease, believe it or not, there are no current laws regulating this labeling on medications. The doctors, nurses and pharmacists we dealt with this week for Leah's minor surgery/anesthesia could not determine whether or not the drugs they were giving her were gluten-free. They just "guessed" they were (we found out later). This whole week she has been suffering from pretty severe Celiac symptoms. A week of frustrating phone calls and e-mails to the surgicenter we used, Walgreens Corporate, and medicine manufacturers have prompted me to start this petition. I'm hoping to get thousands of signatures and will send it to the FDA. Considering 1 in 133 people have this allergy, it's amazing to me that there is currently no legislation mandating drug labeling already. (Especially considering so many food companies are voluntarily doing it). Leave it to a ticked-off parent to get something rolling. Mom claws don't retract easily.
Thanks and feel free to forward this to as many people as you can think of: