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
Yes, your symptoms give you every reason to consider celiac or even NCGS. And forget what others say, IMO gluten related disorders are the most misunderstood of all health issues and YES IT IS THAT BAD, for some it is way worse. Don't fear a diagnosis, it's good to have answers and even better to have an issue that doesn't require meds or treatments - it's something you control by the food you eat - overwhelming as it might seem at first, if it makes you feel better, it is worth the effort!
Wow, gluten and dairy together - you are a brave one! Ledge talk down time. It sounds to me like you are experiencing something that not everyone goes thru but plenty do - it's called gluten withdrawal. Google it (you may also find it under wheat withdrawal). Wheat/gluten can act like an opiate and when you eliminate it, some people go thru a rough time - basically your body is in a crisis mode and needs to re-regulate itself. My husband experienced it with serious brain fog and joint pain, everyone is different. IF that is what is happening to you, the good news is....it should end very soon! Some good probiotics would help and a bland diet for now. Get past this rough patch and things will improve quickly!! I'm no expert, just living the life. If it doesn't pass soon, call your doctor.
Testing is not perfect, particularly with a young child. While a medical diagnosis is preferred, if your baby is obviously healthier on a gluten free diet.. make her gluten free (dairy and gluten problems often go hand in hand), it's only food. I suggest keeping a journal and note her reaction to foods, stool appearance & weight gain... I more than suspect you will see it! Then in a year, review her progress and your notes with your doctor and or peds gastroenterologist. Get her healthy momma, your instincts are right on & then discuss if it's worth getting an official medical diagnosis with the professionals. It isn't going to hurt her to live without gluten and dairy if you make sure she is getting nutrients from good sources, it sounds like it is going to help her!
Well done being your own advocate, it sounds like you found your answer (or at least part of it). You are not alone in your frustration with the medical community (I suggest you check out gluten dude's blog online for others doctor horror stories - so that you know you are not facing this frustration alone).
The good news is, gluten free is working! Given you've gone the medical route thoroughly - I'd suggest you keep doing what you are doing, while researching and interviewing new doctors - there are a few online referral sites for doctors kwoledgeable about celiac and gluten sensitivity (for example Dr Tom O'Bryan has a referral network of docs that go thru his training). I wouldn't obsess about a formal diagnosis and focus on doing gluten free right & finding good sources of information & guidance.
Tons of great advocates who understand your issues and frustration are on Facebook & twitter - and may be a help!
Ps- my weight issues were similar, I barely ate but was gaining & gaining - it wasn't fat, it was "bloat" - lots of it - lost it all gluten free (even dropped a shoe size, apparently my feet had been swelling rather than growing over the years)
Hey, this is a good thing! Yes, it is a hassle (especially at first when you are learning) but once you start feeling well again, it will all be worth it! There is a ton of great info on this site & on Facebook & twitter - those of us living the life tend to know better than our doctors!
I would suggest new posts & pans (particularly the porous ones like cookie sheets), ceramic places are probably of - plastic are not -but if you are sharing a kitchen with gluten eaters, having your own HANDS OFF plates & utensils might help. I read recently about a girl getting glutened from her retainer, I'd check with your doctor/dentist on that one. Kiss your daughter - just not on the lips! And ease of dairy, it helps!!
Good for you, it sounds like you have your answer! Sadly, it is all too common for real problems to be overlooked by doctors (it's all in your head) & anxiety/depression to be "treated" instead of finding the root cause. If all of your health problems vanished with a gluten free diet, it is probable that celiac or gluten intolerance is the problem. Its a good idea to talk to a doctor & if you don't like your doctor - find a new one! For an official diagnosis you would need to go back on gluten for a while and there is value to testing because there may be other damage that you don't even know about - its worth talking to a doctor about it. But never forget, you are your own advocate & follow your insticts, they've gotten you better!
Another smart momma, sounds like you found your answer. Talk to your doctor - maybe they can try blood test before it's totally out of his system. You are not the first mom to try gluten free & see it work, then have to face the doctor (who missed the signs all along) telling you six more weeks on gluten! Follow your instincts, they are good ones.
Sure sounds like you have reason to suspect gluten intolerance. Note in your daughter, there is evidence that celiac blood tests can produce false negatives in young children - and well, even if it's not celiac, gluten intolerance can show the same symptoms. Mucousy floating stools are a sign of a potential gluten problem (and definitely a malabsorbtion issue). Rashes, poor appetite, everything you mentioned is suspect for gluten issues. Celiac is an autoimmune disease whereas gluten intolerance is believed to be an immune reaction - it makes a difference to docs but to you and I... it means the body sees gluten as a toxin and is fighting to get it out in all kinds of crazy ways.
As for your son, I recently read an article in Huffington Post about a girl (Lucy) misdiagnosed with SPD when all along it was a gluten issue. Look it up online, worth reading. I'd suggest one more call to your doctor than try a gluten free diet for a couple of days, can't hurt to try it - it's just food - take notes about any changes (I observed big changes right away in my 2 boys) then talk to your doctor again. once you are totally gluten-free, testing is a problem -so don't go all in just yet, but sadly sometimes (like in my case) you need to kinda prove it for the doctors to give it more consideration. Also consider dairy as an issue (we have both lactose & casein issues in my family). Good luck, keep searching for answers and you will find them!!
I meant Chrohns not Crowns...autospell drives me nuts! PS, you may want to call the GI who will see you in Jan, tell them you have celiac in the family & just went GO - ask them to order the blood work in advance of your appointment - they may not make you wait.
Wow, yet another doctor giving bad advice, it seems to be an epidemic! If celiac runs in your family & you are having so many possible symptoms - there is every reason to do the test (it's like a $300 blood test for godsake, not a big deal). Telling you to try eating gluten free first is wrong. If you so have celiac, it can easily take a year to start feeling better (some improvements may be obvious at first but it's not an instant solution - you may have nutrient deficiencies that need attention, etc) and also celiac and other illnesses (such as IBS or Crowns or 300 other things) often go hand in hand. You are not alone, many of us need to educate our doctors or seek new ones to be understood. Good luck, follow your instincts & question the doctor!
Sure sounds like you are going through gluten withdrawl, which is a pretty good sign gluten is a problem for you. Google gluten withdrawl & you'll see it is not uncommon - for some of us gluten/wheat has an opiate like affect on the brain and detoxing can cause your body to freak out - the good news is it should only last a few days, week tops. It sounds like you've got a good grasp of the diet - be sure to check the ingredients on the feta cheese and the sausage - not always safe & be sure your food is prepared on a clean surface (don't eat eggs made on the same griddle as pancakes). You probably should ads a probiotic to your vitamin routine. it will help with digestion - just be sure any supplements you take are labeled gluten-free, they sneak that darn gluten into everything!
It does such at first but I promise it will get easier. Eating out and convenience are a problem, but you'll figure it out and there is an active celiac community (here, fb, twitter) willing to help. We all get it. It's almost frightening to realize everything you always ate is now bad for you. Guess what, eating so much of that stuff is bad for everyone - once you adapt, you will stop craving it! So the big question is.. what did you eat before? What were your fav foods? I've had to take my entire family of 5 gluten-free & we've found good gluten-free substitutes for everything (except calzones, don't even try on that one). Would be happy to give some recipe/product tips to adapt a meal. Also, I suggest trying to make your family dinner mostly gluten-free & make a little extra to pack for lunch the next day. Or I'll often bake a chicken breast at night to slice up for lunch with some cheese & fruit. It is more work but soon you'll be feeling so much better, it'll be worth it.
My 7yr son was the same - got much better on gluten-free diet but 6 months later was back to stomach pain, we eliminated most dairy & the pain & other issues (he was also having constipation & often had burning red ears) went away. We arent crazy strict as we are with gluten- he can tolerate a little now (8 months later) such as an occassional gluten-free pizza or Slice Of Cheese or a yogurt (i add in a probiotic) but staying clear of milk & icecream.