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 was just diagnosed with EDS this week, but I know I've had it my whole life. I have hyperextendable fingers, elbows and knees and my hips and lower back have been a constant source of pain and instability. I also have thin, stretchy skin, bruise easily, etc. I have microscopic colitis, gluten and casein intolerance (now being told it's full-blown celiac), and mild POTS as well. My EDS/celiac specialist says 20% of his EDS patients also have celiac, so there seems to be a real connection.
I have the same thing. My ANA has been 1:1280 for 5 years. Rheumatoid factor is 27, Anti-smooth muscle antibody is 57. These are very high titers and the docs are expecting MCTD or autoimmune hepatitis to develop, but so far I only have microscopic colitis and gluten intolerance (not confirmed celiac yet). I'm gluten free hoping it will stop hepatitis before it starts (preventing a life of full-time steroids or liver transplant). I get bloodwork by my PCP every 6 months to monitor antibodies and chemistry, and am seeing a celiac specialist who may be able to shed more light. The antibodies were first found due to a itchy post-partum rash, malar rash on my face, and sun sensitivity, but it all went away when I stopped nursing at a year. Had another pregnancy and no problems (except colitis a year later). I feel like a ticking time-bomb, but try to ignore it.
I was a healthy kid and teen with the exception of UTIs, easy bruising and canker sores. 10 years ago I developed a vicious case of traveler's diarrhea in Guatemala and had self-diagnosed IBS after that. Three years later, a stomach bug in Thailand added lactose intolerance to my IBS. After my first pregnancy, I developed an itchy rash that lasted almost a year. Dermatologists and docs could not ID the rash but they discovered I had sky-high autoantibodies but no recognizable disease. Last year the IBS-D turned into diarrhea that I could no longer ignore. A colonoscopy showed microscopic colitis. My gastro refused to test for celiac because a blood panel 5 years ago was negative. So I went the Enterolab route before going gluten free and realizing it was gluten causing all my problems!
I just started the Pepto treatment after giving up on it 4 months ago. Thank goodness for Pepto tablets instead of chewables! I probably had mild post-infectious IBS for 10 years, which developed into microscopic colitis (dx'd last summer). My doc wanted me to take Asacol but I declined and pursued food sensitivity testing instead. Patch tests were inconclusive, so I did Enterolab testing and discovered significant gluten sensitivity, and possible dairy, yeast and soy sensitivity (low titers).
I went gluten/dairy-free 45 days ago and haven't felt this good in 10 years!! No more bloating and indigestion (I looked 4 months pregnant all the time and my abdomen is flat now!), better mood, no cramping, no feelings of anxiety in my stomach. The diarrhea improved only 60% so far. Frequency and urgency are much improved (I'm now going 1-3/day versus 4-6!). And I don't have that feeling that my gut is deperately trying to get rid of whatever it is I just ate. No more racing to the bathroom after meals. No more blaming my problems on MSG, toxic food additives, fat, lactose and spices.
I know my problem is gluten - after being gluten-free for 10 days, I slipped up twice and paid a serious price. Within moments of eating it, my stomach rumbled as if to ask "what have you eaten!?" and I was in the bathroom within an hour and multiple times that day.
I expect it will take time to heal the inflammation in the colon after removing the trigger, so don't expect overnight results on the diarrhea. I've started reintrodicing cheese and butter with no ill-effects, and I never fully eliminated soy, so I'm hopeful I'll be able to eat most foods again (minus gluten and lactose). I'm taking 5 pepto a day (2-1-2) for 8 weeks but I notice it makes me bloated - might be the calcium content. I'm hoping Pepto helps heal the inflammation so I can stay drug/gluten/diarrhea free from then on. I'm also taking Culturelle 1/day (Lactobacillus GG). My doc still wants a confirmatory endo with biopsy, but I'm not sure I want to bother. If it's celiac, I think it developed in the last 10 years (post infection or pregnancies), and I don't have anemia or other nutrient deficiencies. I suspect a biopsy could be negative (I'm not willing to eat gluten for 6 weeks to make it accurate) and early disease might heal quickly and not be detectable. I do beleive MC could be celiac of the large intestine.
If the MC is not gone post-Pepto in 7 weeks, I'll revisit the biopsy then. But for now I'm listening to my body and enjoying my new gluten-free life!
I had Enterolab testing after my gastro refused to test me for Celiac based on a negative screen 5 years ago. If you are gluten free, you can still do the cheek swab genetic test to make sure you are susceptible to celiac. I had 2 genes and this convinced my paediatrician to test my slow-growing 3 yr old. I've been gluten free for 30 days and can't imagine a 6-week gluten challenge for a possibly inconclusive blood test again. I see my PCP and will instead ask for long-overdue chemistry tests that look for signs of malnutrition (Vitamin D, Vitamin B-12, etc.) I also had sky-high auto-antibodies this time last year, so I'm curious to see whether going gluten free lowers their levels. Maybe I'm not a ticking time bomb for RA, Hepatitis or Lupus after all!
So let's say I skip the bloodwork and go straight to a biopsy. Do the same rules apply? Or do my microscopic colitis and chronic diarrhea suggest I might show villi damage without having to consume tons of gluten for weeks before the test? Again, I've only been gluten free 30 days - that's not enought time to heal the villi, no?
I'm reading this thread with great interest. I had positive Enterolab testing done and have been 99% gluten free for a month. I see my internist in one week and will ask for a Celiac panel then. If I start eating gluten now, is that enough time to get an accurate result in one week?
I dread eating gluten again. A couple of mix-ups this month (corn chips and corn tacos made with gluten at Moe
I'm new here too, so I can't comment on many of your questions, but regarding dairy, you are probably lactose intolerant due to the intestinal damage, you may not necessarily be sensitive to casein, the protein in milk. If you do OK with yogurt and lactose-free milk, it's just lactose intolerance and it may go away after you heal your gut. I've been gluten-free for 2 weeks, and after feeling GREAT at first, i'm now suffering from extreme mental fogginess and sleepiness. I suspect it's gluten withdrawl. The diarrhea initially improved a bit, but now it seems to be getting worse. I hope this turns around soon!
I'm new to this forum and the celiac disease world. I've had IBS-D for 10 years, unexplained autoantibodies for 5 years, and recently was diagnosed with microscopic colitis. Bloodwork 5 YEARS AGO for Celiac antibodies were negative, so my gastro determined (this year) that I do not have celiac disease and never will, so there was no need to re-test or biopsy! So I did Enterolab tesing on my own. My results are below - basically, I am gluten, casein, yeast and soy sensitive, and I have 2 celiac genes. I am surprised by the number of positive tests and I would like to know, if gluten is my major problem, will a gluten-free diet eventually quell the immune response to dairy, yeast and soy? Will I ever be able to eat cheese or yogurt again?? I'm lactose intolerant do I don't eat much dairy otherwise. Can I at least eat goat's milk cheese and yogurt in moderation without doing damage? Can I eat dark chocolate made with soy lecithin?? Do these results suggest full-blown celiac disease or just intolerance? Should I get a biopsy to confirm or is this enough? Should I get my kids tested if they have no symptoms but are petite for their age?
I've eliminated all these foods for 2 weeks and feel much better, although I still have mild diarrhea. Mild depression, feeling stress in my gut, indigestion, tiredness and bloating are all gone. My autoantibodies were ANA (1:1280), Rheumatoid Factor (27), and Anti-actin/Anti-Smooth Muscle Antibody (57). I've read that ASMA is used as an indicator of the severity of intestinal damage from celiac disease. But my docs think I'm a ticking time-bomb for autoimmune hepatitis, RA or Lupus instead. I'd rather it be celiac disease!
Here are the results:
A) Gluten Sensitivity Stool and Gene Panel Complete
Fecal Anti-gliadin IgA 37 Units (Normal Range is less than 10 Units)
Fecal Anti-tissue Transglutaminase IgA 14 Units (Normal Range is less than 10 Units)
Quantitative Microscopic Fecal Fat Score Less than 300 Units (Normal Range is less than 300 Units)