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
The genetic testing is in, and I do not have the marker at HLA-DQ2.5 that is most often associated with celiac disease.
However, I do have things at other places that place me at slight risk for non-specific inflammatory problems that can be associated with celiac disease. Here's what the report says:
This SNP is located near two genes – IL2 and IL21. Each gene encodes a protein involved in regulating immune cells. Studies have implicated both of these proteins in intestinal inflammatory diseases other than celiac disease.
3p21 near CCR3
This SNP is not located in any known gene, but the region contains a number of genes that are related to the immune response. These genes, including the closest gene CCR3, encode chemokine receptors, a class of proteins that bind to molecules known as chemokines. Chemokines play important roles in regulating the movement of white blood cells and, along with their receptors, have been implicated in several diseases.
Multiple studies have identified this SNP to be associated with celiac disease in populations with European ancestry.
So, as with everything else, nothing is crystal clear. The test on HLA-DQA only looked at 2.5, so I could still have some kind of atypical celiac. I either stop here or I spring for the more expensive genetic testing, but I'm not sure what that might accomplish, since I'm already gluten free. I just wish I had a definitive answer.
Thanks; since I wrote this I went back to gluten for a bit, and now am back to gluten free. I'm doing okay. The gastritis has resolved, though I had another bout of something which I really think from the symptoms was a very mild case of pancreatitis(!) but that has resolved, as well. Taking things a day at a time.
I'm relatively new here, and I have to say that you all should relax about the newbies. Being new does not equal being stupid or gullible.
This is an obvious troll. No one is going to take this seriously unless they remain completely uneducated about gluten in all other respects. Even if the bran didn't contain gluten itself, the mere fact that it's processed from wheat would make it rife with cross contaminants. I think even a newbie is smart enough to sort that one out
It will get so much easier, especially when you really start to process that you're feeling so much better and it's all because of the diet! I related to so much of what you wrote, the random pains, the not waking up feeling refreshed, and have also noticed that these things get better when i eat gluten-free. Once you really wrap your head around how much being gluten free improves your life, you will never look back. It does take a little time, as was pointed out, for it to all sink in. I'm still in the early days too.
There is a lot of great information about avoiding cross contamination here, so I'd encourage you to continue reading this site, asking questions, and reminding yourself that you are entering into a quality of life that you never thought possible, just by changing what you eat. It's so worth it!
Yeah, I understand what you are saying. I just wonder-- does that happen to other people here before getting on the gluten-free diet? Does the metabolism change with age and bring with it the usual weight problems even if you are celiac? I guess I'm trying to tease out whether my inability to gain at a younger age might have something to do with gluten intolerance or if that is just coincidental. Same with the wheat germ reaction. Is there something about wheat germ in particular that makes it particularly heinous, like a high gluten content?
I guess I'll continue to post in this pre-diagnosis forum, since I probably will never have an official diagnosis.
I thought I'd ask the group about a couple of things. The first is wheat germ. I used to love this stuff, but even back in the day I discovered that, when I'd eat it, I'd get terrible indigestion and stomach pain. I never had this with other wheat products, just wheat germ. So I stopped eating it entirely and probably haven't had any in 30 years. Anyone else experience that with wheat germ before you realized you were GI/celiac?
The second thing is kind of odd. I was always very, very thin in my younger years. We're talking 5'7" and 95lbs kind of thin. No matter what I'd do, I could not put weight on, and I stayed this way into my late 30's or early 40's, at which point I finally began to gain (I quit smoking and went on an ice cream binge which, I swear, changed my metabolism). Now, in my 50's, I struggle with weight gain like anyone else my age.
I know that being very thin and unable to gain weight can be a sign of celiac, but why would it change all on its own without stopping gluten? Any thoughts?
Thank you all for making me feel welcome. Yes, it's an odd thing to have the clear benefit from not eating the stuff, but to have all the testing come back with no indications of disease. It's clear even after only a few days of not eating gluten again that I have much more energy and focus without that in my diet. Whatever-- I guess I don't need to hang a label on it, I just need to take it seriously. It will be interesting to see if the genetic testing shows any elevated risk for celiac.
My husband was marvelous-- yesterday he went through the cupboards and fridge and got rid of EVERYTHING that might have contained gluten. All the wheat flour, Bisquick, anything resembling bread or bready stuff, all in the trash. Then he went out and bought a whole pantry's worth of gluten-free replacement products. I guess he's on the bandwagon with me, which is wonderful.
Celtic Queen, you may be right about the spectrum and it may also take some time for the disease to fully develop. I had a dog with autoimmune disease which was kicked off by a rabies vaccination. He was healthy for years, up until about 6 months after his last rabies shot, then he just fell apart. I'm sure any testing for AI when he was younger would have shown nothing, even though it was clearly in there waiting for the right set of circumstances to really kick it out and into a symptomatic state. Could be the same with gluten intolerance.
I was here a few weeks ago with a strong suspicion that celiac is my problem. Since then, I got copies of my antibody test results and decided that they were pretty strong indicators that I do not have celiac. Before anyone asks, I am sufficient in IgA, so it's not that. I also discovered that my gastroenterologist did suspect celiac as one possible diagnosis before going in for the endoscopy I had, so it's clear that he would have looked at that region of my intestines. I had thought that he had not done that before. Since there's no report of anything amiss from that part of my body, I think I can safely conclude that I do not have celiac disease. I do have a genetic test out there which will tell me if I have any genetic predisposition to celiac, but I don't expect that to be abnormal, since none of the other stuff was.
I was borderline low in vitamin D on other testing done around the same time, and decided that was probably the whole of my problem, especially since the improvements I felt on the gluten free diet also correlated with beginning vitamin D supplementation for the osteoporosis.
So, I decided to chuck the gluten-free diet. I didn't get intestinally sick after eating gluteny food, but after several weeks I have noticed that the increased energy and mental clarity I had regained after beginning the diet / supplementation has really receded and I'm back to being the slightly stupid slug I had become prior to the diet.
I guess this means that I have some sort of gluten intolerance which is not celiac disease, so I've decided to adopt the gluten free diet again and just stay with it as though celiac were my problem. Fatigue and brain-fog are huge things I battle through each day, and if this diet fixes that, for whatever reason, I'm in.
I didn't really see an appropriate place here for people who aren't true celiacs to participate in discussion about symptoms, etc. Not sure if I should continue posting on celiac.com as a certified non-celiac, but I will certainly continue to participate here to find information about foods and diet, etc. Thanks for being here and being such a great resource!
Thanks. This was a big shock to me, too. I had so many problems with my digestive system that I never realized were there. I knew I had occasional problems with my stomach, but nothing like this.
They looked at just about everything except the small intestine when they did the endoscopy and the colonoscopy last month. I so wish we had thought to suspect celiac disease before I had the endoscopy done, but it is what it is. There's no way I'll have another one for at least another year, so I am left to diagnose the old-fashioned way, through observing what happens with the diet change. By the time they go in there again to check the BE, I'll be gluten free for too long to see anything, I suspect.
So far in other ways the diet change has been good; I have more energy, better mental focus, and I believe I have less overall bowel distress (less bloating, distention and constipation) but it's too early to know for sure that this is a lasting change. I sure wish I could get this gastritis resolved and I guess I am going to have to go a little bit bland with my diet in order to help that happen. I had wanted to avoid that but it's probably necessary.
Yes, Barrett's esophagus. I do not know if I have celiac; they did the endoscopy before there was suspicion of celiac and did not go far enough in to get biopsies from the right area. Antibody tests were "normal" I was told but I am waiting for them to send me the actual results so I can investigate that further. My doctor asked me to go gluten free as a test to see if it helps. I have a lot of other problems that point to celiac (osteoporosis at 54, etc.)
Does anyone have an explanation for this? I have a diagnosis of gastritis made through endoscopy, but I've never really had much stomach pain-- only occasional, intermittent problems. I also have GERD which is severe enough to cause cellular changes in my esophagus, and I never had a lot of pain with that, either. The gastroenterologist gave me a prescription for Prilosec, which I take in the mornings.
Since going gluten-free approximately three weeks ago, my gastritis has become extremely noticeable and painful. I have only been on the prilosec for less than a month, as well, and missed one dose about a week ago. Since then I've been in a lot of discomfort and have been living on Pepto Bismol, which is about the only thing that will calm the pain.
I know there can be a rebound effect with the PPI's, but I haven't been on them for very long, and I only missed one dose. The only other explanation I can think of is that there's something going on due to the gluten-free diet and this is somehow part of healing? Seems strange that my stomach would become so sensitive as a part of healing, but there's a lot that doesn't make sense about these problems I've had. Anyone have any thoughts about this. or similar experiences?
Thanks! You all give me hope, and that's fantastic. I'm very glad to hear that others are starting to feel more active, too! Answerseeker, I think my moods have been affected for a long time; I'm just now starting to feel like the person I used to be, mood wise. I have been so irritable and depressed for a long time. I hope this all continues to get better for all of us!
I'm heading into the third week of eating gluten-free, despite the normal test results on the celiac panel. My doctor wants me to stay on for at least eight weeks anyway, to see if I notice a change.
Observations so far: I am starting to feel less bloated, and I *seem* to have regained some of the mental agility that had gone missing in recent years. I am less error prone, and I feel more effective and efficient at work.
More notably, I feel less irritable and more mellow. I am able to relax. I'm also noticing that my time at home in the evenings is slightly more productive. Instead of just getting home and shutting down, I'm beginning to putter around a bit at night, do small loads of laundry and other small tasks that I never had energy for in the evening.
I have had many years of fatigue and trying various things that I thought would be "the answer," so at this point I'm quite cynical about the odds that this diet will prove a long-term fix for anything. The jury is out; in the past I've had "placebo effect" improvements that seemed real, but didn't last.
Maybe it's all coincidental, but I really do hope it lasts and continues in this vein. We shall see. I like the "more mellow" bit, quite a lot. It reminds me of the me I used to be.