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
From my experience you become MORE INTOLERANT the longer you are away from gluten. When I am contaminated I get diarrhea and bloating, when I am glutened I am TERRIBLE like food poisoning. I was able to eat gluten for 25 years now I can even stand a few crumbs... My doctor told me it was because I am now healed or healthier so the exposer is more dramatic and damaging a healthy system. The only other things is another food allergy, we build up intolerance with damage, you may be eating something your body can't handle as well. But I would tighten up your diet, check labeling, did ingredients change on some packaging? and be more diligent of CC. Then try some allergy testing if all else fails. Eggs were causing me horrible bloating that I didn't know I had developed an allergy to them!
I had mucus in my stools pre-diagnosis. I now get it occasionally when I am glutened, even a little bit. I never get mucus in my stool when I mess up my egg allergy or my other food allergies. I personally contribute it to getting into gluten somewhere. Reading a study in the last year said that even the BEST gluten free diets, it is impossible to 100% eliminate gluten due to changes in manufacturing, contamination, cross contamination or improper sterilization. We all do our best. Drink lots of water, exercise, and sweat any gluten out of your system. Then re-check all the labels you depend on, has something changed?, then check ANYTHING new in your routine? I hope it goes away and was just a fluke thing.
Good Luck with the enterolab, I hope you find some answers! Remember in order to perform these tests you do have to damage your system, damage you have to heal from, be careful and stop if conditions worsen, no testing is worth serious complications.
I do have the skin form celiacs mine manifests itself with tongue spots (patches of very painful spots on my tongue) and dry cracking skin around my mouth. Though I haven't seen them in a long time. My vitamin D deficiency gives me TERRIBLE joint pain and exhaustion. Am not sure to be honest on the effects of B or Zinc. Sorry I couldn't be of more help! But you can have your vitamin levels checked by a primary care doctor with a simple blood test.
I have been through very similar to u, told it was stress, vitamin D deficiencies, bad spells increasing with age, exercise runs, oh the cramping...took out gallbladder only to get worse, negative on celiac panels, acid reflux, high fiber supplements...joke.
All I have to say is you know your body better than anyone, I can't eat early morning even being gluten free, does not matter what you react to if you are celiac with damage you will react to everything until you get gluten free and purge your system to heal. Detoxing can be slow and take upwards of 6 months to remove symptoms. My vitamin D levels are stable and good, it is NOT stress related, and even though I can not test positive for celiac for the life of me, I am 100% intolerant of gluten! I do have other allergies that have developed due to the years of damage on a weaken system (eggs, garlic, citrus fruits) but I was able to pin-point them later with an allergist easy b/c I got my gluten systems cleared up! It is called "practicing medicine" for a reason, they do not know all the answers for every person. I am a new person being gluten free for over a year, I truly have a stomach stress free life most of the time! I hope you experience that!!
So happy to hear that! You will not regret it! Your quick service meals will be do able but your sit down will be excellent!! Google the different restaurants in the parks with allergy options and you can find reviews on the best ones!!
Well that is a shame the restaurants have the best meals for allergies with very knowledgeable chefs, you should really think about increasing it, it is well worth the cost with drinks included! I mean realistic, do you really see "quick service" fast food as being accommodating? When fast food becomes accommodating it wouldn't be "fast" food...
A gluten free diet works for many allergies indirectly. Removing allergens from children with ADD or Autism allows their bodies to function without added irritants. Maybe the gluten free diet is eliminating allergens from her already sensitive immune system. Also gluten free diets force people to avoid alot of pre-packaged processed food, having them eat at home more, with alot of fresh fruits and veggies. Your daughter may not have gluten intolerance but the gluten free diet is eliminating another food or preservatives her body can not handle.
My suggestions (you may have already done this!):
Remove ALL fabric softeners=major irritant, number 1 seen by allergists. (re=wash all sheets, clothes, towels, stuffed animals, pillows etc.)
Remove all scented items like detergents, shampoos, lotions=fragrance large irritant.
Try to use natural cleaning products like vinegar, baking soda, etc.. to clean for a few weeks.
Try a elimination diet(boiled chicken and rice for 2 weeks then add one food type at a time).
If you can not get her to tolerate that try dairy free, egg free, gluten free, and soy free for a few weeks then introduce one at a time.
Side note, celiac or gluten intolerance is an auto-immune response responding to steroids, other allergies are histamine reactions maybe it is not DH but it could be an allergic response causing the skin problems. My egg allergy causes constant hives, rashes, etc combine with my dermatographism (very sensitive to physical touch because mast cells in my skin release histamines at the slightest touch.). My skin can not take chemicals, fragrance, or abrasion.
Your post made me laugh, I understand your dilemma and you are a true stomach sufferer! I used to have an arsenal of meds to medicate. I guess it really depends what you want to deal with or suffer through...
First off, me..I CANNOT eat gluten, there is no build up just an UNLIKEABLE experience=vacation ruinned. I also can not have eggs. I do cheat but I have can only 1 item with eggs like a pizza out every couple of days or I am bloated and grumpy! Gluten is by far the worst!
About Disney if you get the meal plan and eat at chef restaurants they will make you ANYTHING you want catering to your allergies. I would do the best I can to avoid ALL your allergies to have a great vacation. There is a list you can pick up at guest services at each park entrance, they will tell you which places have allergy free foods in the park and the items they offer! Alot of gluten free and dairy free options. You can also bring some staples from home to carry with you to save some money if needed! Call Disney guest services and they can put you on the phone with someone knowledgeable about allergies to help you book your restaurant reservations before your trip!
It is different for everyone but there is a long detox and healing period if you are Celiac or gluten intolerant. It is not just a diet but a lifestyle.
1. start with an elimination diet. Boiled chicken and rice with water for 2 weeks. It is terrible but it is the best way to reset your system then add one food every couple days and see how each food makes you feel. Me I found out egg whites were another problem making me feel nauseous on top of being gluten free for example.
2. check everything you use. Being gluten free means head to toe, it is an exhausting process. Check all products, anything touching your skin or ingesting, for wheat or wheat derivatives. This can take a long time, living gluten free takes purging your world of gluten as much as possible to limit exposure. You may be eating gluten free but are your pots, pans, silverware sterilized with no scratches in the coating?, shampoo, make-up, lotion, containing vitamin E (tocophernol)etc exposing you? Do you have crumbs in your silverware drawer? Dedicated new gluten-free butter, jam, etc? Do not stress, I am just trying to point out that two weeks is just the beginning, the fact that you ARE feeling better is a good sign. From what I read healing from each glutening takes the body up to 3 months to repair!!
Side note, I have never experienced constipation as a problem...so I can not comment on your stool softener, but from my experience watch out for "all natural pills" they can contain gluten in the binding of the pill.
I wanted to mention there are ALOT of good gluten free pasta options. The trick with gluten-free pasta is to NOT OVER COOK= A mushy mess with slimy taste. Make sure you follow the directions to a T or even back down the time a minute or two. My favorite brand is Tinkyada for lasagna, spaghetti, penne etc!! But Quinoa pasta is the firmest, great for casseroles or pasta salads. Also very good is rice noodles or potato pasta! You can enjoy great pasta with no gluten-free taste at home!!
I don't even know how to start this. I know how you feel my sister and I both used to get them too. My sister worse than me. They are ugly and sore, like patches of sores that travel. They come in bursts and make your tongue super sensitive to heat or salt etc. My sister was told by a doctor that they were a sign of an immune deficiency. She has a primary immune deficiency and celiac diease. I have gluten intolerance but no proven celiac diease (do not carry the gene) with no other diagnosed immune or auto-immune deficiencies. Since going gluten free both of our tongue spots have disappeared or changed to very slight outbreaks!!
Additional question: Do you ever get red rings around your lips? Like super dry chapped lips but over the top of your lips? I know I am not describing this correctly but do you ever get really bad chapped lips that seems more than most people???