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
Hi, I noticed with some prepared gluten-free flours that there is a slipperiness to it and I'm wondering which ingredient it comes from specifically. I often use Bob's Red Mill gluten-free pizza dough and whenever I make it and wash my hands I notice my hands feel like they are coated in some kind of slippery residue. Does anyone know what causes this? I'm starting to notice that this blend is upsetting my stomach and I'm wondering if it's from whatever that ingredient is, but haven't been able to narrow it doen from other products. Thanks!
I had increased Intraepithelial Lymphocytes on my biopsy with no villous atrophy (Marsh 1) and my dr. diagnosed me with celiac, but I was at a celiac center so maybe they are more knowledgeable than a regular GI doc? I think you need a second opinion. I has negative tTG but very high deamidated gliadin IgA tests, so combined with multiple symptoms (joint pain, digestive issues, brain fog, dizziness, etc.) it was enough for them to make the diagnosis. I've been gluten-free for 2 months and most of my symptoms have definitely improved. Before self diagnosing, I would go for 2nd opinion and maybe run more tests. Did you get the deamidated gliadin tests? I've read that can be just as or more effective than tTG, but most doctors just assume it's the old gliadin tests which are unreliable, so they dismiss them.
You MUST be your own advocate and listen to your gut (literally and figuratively ☺). If you still think you might have it, go to another doc, preferably one who specializes in celiac. Good luck!
If pernicious anemia were a cause of B12 deficiency, wouldn't that go away once you were on the gluten-free diet long enough to let your gut heal? I certainly haven't been on the diet long enough to tell, but I'm going to get the B12 and B-complex and see if that helps. Thank you all for the info.
Hopefully this will go away with maintaining the gluten-free diet, because it's very distracting, annoying, and painful!
I have been gluten-free for around two weeks now and I've noticed my tongue has become very painful- it almost feels like there are open cuts all over it, thought I don't see any on my tongue. I'm starting a food journal to try and track possible causes, but I was wondering if anyone else out there has had a similar reaction like this, and if it was caused by another pop-up allergy or to the gluten-free diet itself. I know people find out after starting gluten-free that they have other reactions to casein, etc. I haven't eliminated dairy or oats (only eat gluten-free oats) and have tried a bunch of new certified gluten-free product which I know may have new ingredients than what I'm used to.
If anyone out there has had this kind of painful tongue sensitivity I'd love to hear if it's commonly caused by certain ingredients or if it's different for everyone. If I can narrow mine down with the food journal I will certainly post an update. Thanks!
I saw Pizzeria Uno has a gluten-free menu, which includes gluten-free pizza. It got me wondering about cross-contamination and whether they were really using different pans, etc. to keep it separated.
If a restaurant has a gluten-free menu, should I still ask questions to confirm that it's truly gluten free, or are there standards for gluten-free menus so I don't need to worry about it?
TimothyWelch said you could try to slowly reintroduce old foods after the diet but it didn't work for most people introducing it too fast. Glutengirl42 also mentioned she heard some claiming to eat anything after SCD. I've heard that too so thats why im questioning it b/c I have yet to see any evidence that shows you can go back to gluten. I want to know if that's true or just rumor.
Some people have posted that being "cured" by SCD actually just means being symptom free and you still have to stay off gluten. Others make it sounds like you an go back to gluten or eat whatever you want after SCD. I have a hard time believing that people can go back to eating gluten after they've done the SCD.
My question is: Is there any evidence or personal experiences that people have not only gone back to gluten after SCD, but have had another endoscopy to prove there is no more damage caused by celiac from eating gluten after SCD? Even if people feel like they're being cured and eat gluten after SCD, that doesn't mean the gut damage still isn't happening. Any info to back up these claims would be greatly appreciated. Thanks!
I totally hear you! The best doctors I've had had always been willing to listen and HEAR my concerns, and work with me on finding the right diagnosis. I think some doctors just don't realize their role should be as a partner in managing your health. Instead, some have a "god-complex" who treat their patients as uneducated minions who should just silently accept whatever they dish out, even if their knowledge is outdated. Very sad, especially when the average time frame to diagnose Celiac is 11 years! I wonder how many people who had to wait a decade for a DX had mixed test results and were told by their dr. that no follow-up was needed...
Glad to hear you were near a good center for your family too and tell your brother not to give up. There is a dr out there who will listen to him somewhere- you just have to keep looking!
They can also do a fine-needle biopsy and look at the cells to see if Hashi's exists. I never got tested for that but had a partial thyroidectomy to remove some large nodules, and it was when they looked under the microscope that they saw the Hashimoto cells... and thyroid cancer. So, no thyroid for me anymore, but at least I know I have Hashimoto's (in addition to Celiac) so I have some awareness on what's causing my tiredness, brain fog, etc.
Get the AB test and if you suspect that's what it is, ask for the fine needle biopsy too. They only take out a few cells with a needle they insert into your neck.
I just wanted to share my story in case someone else is searching for more information on testing for celiac. I had terrible joint pain, stomach issues, fatigue, and other symptoms, which led me to get tested by my dr. The celiac panel was from Quest Diagnostics and included the Total IGA, ttG, and Deamidated Gliadin IGA tests. Of these, I was ONLY positive for the Deamidated Gliadin IGA test!
TISSUE TRANSGLUTAMINASE ANTIBODY, IGA = 3 (Ref <5=Neg) U/mL
IMMUNOGLOBULIN A =238 (Ref 81-463 mg/dL)
GLIADIN (DEAMIDATED) AB (IGA) =>100 (Ref >20=Pos) Units
This led two doctors to believe I didn't have Celiac because I was negative for ttG, which they claim is the old trusty test. I went to Jefferson Hospital in Philly that has a Celiac Center, and they were smart enough to do upper endoscopy. The biopsy showed I was POSITIVE for Celiac!!!! Just got diagnosed last week and starting gluten-free diet. Hope to feel better soon! I think the Deamidated test is far more sensitive at detecting Celiac, since it shows the antibodies themselves. I was more than five times the normal positive limit, which should've tipped off the first doctors I saw.
Just want to share with people that you have to be your own advocate. Don't let doctors brush you off. One dr. I saw didn't even realize the deamidated gliadin test is a newer, more reliable version than the old gliadin tests, so there is a LOT of mis-information out there. If you suspect Celiac, don't give up with testing and good luck!