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 think it would be totally doable. They rely far less on processed foods over there- having fresh whole foods at meals would allow for a lot of options. Her hosts could just be advised of her needs and maybe allow her a spot specifically for her food prep.
The hiatal hernia may very likely be responsible for your bad breath- basically it is letting all of those nasty gut chemicals be expelled through your mouth. Yummy. Depending on when and what you have eaten may affect why your doctor said it was not halitosis. Anyway, a few recommendations...
#1 fix the hernia...easy peasy, you can find diagrams online, or ask your chiropractor to do it. Think the heimlich maneuver, but with steady, even, upward and inward force for several minutes. I was astounded that I had been walking around with this visible bulge that looked like a ball of protruding fat for two years, when all it took was two minutes of pushing on it to go away!
#2 Get a high quality probiotic. Important for celiacs anyway, but very helpful for maintaining healthy gut flora, which will do their job to break down your food rather than let it rot and stink.
#3 If you aren't a flosser, start. That tiny little bit of gunk trapped between teeth can REEK
#4 Are you on any meds that cause dry mouth? Switching meds or using biotene paste and wash and chewing gum like mad will help.
#5 Therabreath, as someone else mentioned
#6 As far as body odor...I have read alot of speculation that it can be a result of food intolerances and/ or excess sugar consumption. I don't know if it is true, but if you continue to have trouble nailing down the source, it is worth looking into. I had halitosis my whole life...right up until my celiac dx...gluten free meant halitosis free for me!
Oh SMH the idiocy of doctors never ceases to amaze me. With a first degree relative with celiac, your chances are 1 in 12. Throw in your symptoms, a questionable biopsy and a positive ANA and you might as well be waving a red flag at them. Sigh. Hope by now you have gotten some answers. I am so very sorry about losing your baby. How awful. Stories like yours are all the more heartbreaking when you know it maybe didn't have to be that way if more doctors were on the lookout for celiac. In my opinion, EVERYBODY should be screened. So very angry for you!
Have you found anything more out? I see your post is a couple months old. If not, was just going to ask if they did an EMA test at all? A positive EMA would definitely mean celiac. My only idea for the increase in ttg is that the disease is continuing to progress because he is getting cross contaminated by gluten. If you have gluten in the house, it is really easy to do. He could also be developing increased sensitivity- meaning his immune system is reacting to levels of gluten considered " safe" for most celiacs (most packaged gluten-free food falls into this category. Has to be 20 ppm or less to get a gluten-free label, but some celiacs cant handle 20ppm) Lastly...does he eat oats and dairy? Many celiacs will have an immune response to them due to the proteins being similar to gluten. If you have cut out gluten but he is loading up with the other two, that could be your problem. I hope you get some answers!
Also, constipation is a hallmark of celiac. My 11 year old was on laxatives from 2 months until he was five...because he was undiagnosed and I didn't know any better to ask about celiac. He was BREASTFED and constipated..that just doesn't happen unless something is really off. They just didn't bother to find out what it was. Gave him acid reflux pills for the spitting up and laxatives to poop
treated the symptoms because they were too lazy to look for the cause. Makes me madder than words can say because he suffers permanent issues because of being undiagnosed for 6 years.
No doubt about it, sorry. Your daughter most likely has it also. Low positive is like being "a little bit pregnant." You can actually have massive intestinal damage have completely negative blood work. She needs an endoscopy done pronto. If you want to put your son through it, keep in mind, celiac can be easily missed with an endoscopy. The intestinal area is the six of a football field, and celiac can show up in small patches. Biopsies ate hit and miss. A negative biopsy doesn't mean he doesn't have it, even if the GI tells you that. You will find more knowledge on this board than a hospital full of doctors. His blood tests are undeniably, indisputably positive for celiac, and if you put doubt in his mind about that, you are doing him a great disservice.
Your ttg is positive, dgp negative. Ttg is generally Celiac but can also elevate with other autoimmune disorders. If you get a positive EMA then you have celiac. Gene test is controversial at best- if you have the genes or makes it more likely you have celiac, that is all. Glad you are finding a more knowledgeable dr.
SMH it is Drs like this that drive me bananas. Stupid GI and he doesn't know what to look for.
#1 Positive EMA = celiac. Period.
#2 Celiac can not be diagnosed with a colonoscopy. He is either dumb or just wanted to bill for an extra test.
#3 Celiac is easy to miss in a biopsy. It is often patchy and many drs only take one or two samples...which I would bet money is the case. Minimum of four should be done, but 8 is better
#4 He diagnosed lactose intolerance because the tips of the villi showed damage. That is where the enzyme necessary to digest lactose is made. Know what causes the tips of the villi to be damaged? Celiac! Argh. Get another GI, pronto.
You have celiac. Your low IGA is causing false negatives most likely. Dgp test I specific only celiac. However, having a diagnosis is helpful because without having it, doctors wont take you seriously when you say you need to be gluten-free. If you are hospitalized, you may not get to order from a gluten-free menu without a diagnosis. Many times it will be important, so try to get it. Your biopsy is indicative of celiac as well. Either they missed the worst area or you don't yet have significant damage, but the scalloping of th e duodenum combined with the positive dgp is a slam dunk.
Word of advice when it comes to doctors...be prepared to tell, not ask. Most of them (even GIs) don't know diddly squat about celiac. Spend a few hours on this forum and you will know more than they learned in medical school. Be your daughters advocate. She almost definitely has celiac and don't let them convince you otherwise. Also, the biopsy, BEFORE she goes in, make sure that they take a minimum of four biopsies. Celiac is often patchy and easily missed. Also make sure they di an endoscopy, NOT a colonoscopy. (lot of really dumb GIs out there!)
Of course you can taste gluten! It is called DELICIOUSNESS. Gives it away every time for me. As in, "Wow, these enchiladas are soooo good I cant believe these are corn tortillas!" They weren't. Three days in the hospital, months of pain afterwards. Something being delicious makes me highly suspicious now.
LOL,. I frequently have dreams where my celiac miraculously just "went away" and so I dig right into a delicious donut...I really miss real donuts. The gluten-free ones are just...meh. I always wake up so disappointed!