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
Thank you both so much. The stomach pain was so bad last night I couldn't sleep. I finally fell asleep some time after 4am (last time I looked at the clock). I woke up feeling better. I took 2 150mg Zantac on an empty stomach as prescribed by my GI doctor and 15 minutes later I juiced 2 lbs of organic carrots, added 1 tsp Barleans flax oil and slowly drank the juice. As of this moment I have no pain and am starting to feel hungry, which is a good sign. Normally I would reach for an organic banana but not today. Nor will I reach for the organic strawberries in the fridge because I read berries are not good when you have gastritis. I am starting the food journal you both suggested. Thank you again for your help and support.
Really need some help. Several years ago I self-diagnosed myself with some sort of gluten issue after my stomach pain and reflux responded to a gluten-free diet. But I've been binge eating (gluten and non-gluten) on and off since then and totally out of control due to some stressful situations in my business, and the pain has come and gone accordingly.
I just had my yearly colonoscopy and endoscopy. The result is I have very bad diverticulosis (not diverticulitis - the infection) on both sides of my intestines. My GI doc said it's usually only on 1 side. He also told me I have moderate gastritis. He did several biopsies that showed I do not have celiac disease. He diagnosed me with a gluten sensitivity.
The reflux from several years ago seems to have resolved even when I gluten myself but the pain in my stomach area (between breasts and belly button) almost makes me cry. It's a burning, bloating ache, like eating too much junk at the circus when I was a kid. When I have this pain even clothing touching my stomach is painful. In addition to the stomach pain my eyes burn, I feel weak and all I want to do is lay down and cry.
I bought a juicer and have been juicing a 'mean green': organic kale, celery, cucumber, green apple, ginger root, lemon. I also juice organic carrots. As I drink the juice it feels (and tastes) amazing and it feels like it's coating my stomach and the pain eventually resolves.
If I stick to a gluten-free diet, and by that I mean single-ingredient foods (fruits, veggies, organic fish, etc.) I think I would be pain-free. I also take Barleans Oil and turmeric, both for inflammation, which is what gastritis is. I was told NOT to eat processed foods labeled 'Gluten-Free' because they contain ingredients that are not as healthy as the single-ingredient foods mentioned above.
I bought some organic bananas yesterday and had one several hours ago. I am so sick now as I type this that I can't think straight!!!! I did a search for 'are bananas gluten free' and found the info below on www.glutenhatesme.com:
Bananas contain a protein called lectin, which is also found in many of the “night shade” foods that some people with Celiac or gluten intolerance have trouble with. Lectin is somewhat similar to gluten and can create an autoimmune response. This is due to the body confusing lectin with gluten. Some researchers even speculate that gluten sensitivity is actually a lectin allergy that was previously unknown. I also found that many of the foods, including bananas, have been processed with GMOs which can contain lectin and can cause gluten-like symptoms.
I am going to try the Paleo diet and keep a close eye on every single thing I eat. I appreciate the opportunity to post this and would love any and all feedback and support.
No replies? I'm surprised. Maybe there's no answer and both are acceptable? But if so it seems to me that would cause even more confusion since so much confusion already exists about the difference between intolerance, allergy, sensitivity. Can anyone offer any feedback? Thanks.
Thank you! Actually I'm happy to be in the club because it will force me to take better care of myself. I just called my younger brother and told him what's going on so he can keep an eye out for symptoms. One question though, is it NCGI (non-Celiac gluten intolerance) or NCGS (non-Celiac gluten sensitivity)? I've seen both online. Since I'm in the club I'm just wondering which club I'm in!! Thanks.
OMG!! Thank you so much. Those articles are scary. By the way, is it NCGI (Non-Celiac Gluten Intolerance) or NCGS (Non-Celiac Gluten Sensitivity)? I didn't realize how serious this sensitivity can be. That's it!! Every crumb is the ENEMY!!
Thank you! I just read that PPI's like Prilosec cause malabsorption issues and I've been on 2 Prilosec a day for 2 years! Some of the people mentioned deficiencies in Vitamin D and iron. Yikes!! I was able to stop the Prilosec in January due to the gluten-free diet, and a supplement I bought called Heartburn Stop by Renew Life. It's gluten free herbs and minerals that work just as well as Prilosec. I go to my primary for my yearly check up around August, and I bet those tests will be way different than last years.
Wow, you are so knowledgeable. This whole thing is new to me. It started with GERD 2 years ago and I just learned about gluten less than a year ago. According to the regular endoscopy and colonoscopy I had in August 2012, and the capsule endoscopy I had last week, there's no damage to my large or small intestines. The fact that I've been inconsistent has no affect on the test results that showed, at this moment, there's no gut damage. I have the pain, bloating and discomfort without the intestinal damage. I'm very lucky and I will not look a gift horse in the mouth.
I was also amazed that they could tell me there's no gut damage from those standard tests. They said the villi was intact. I thought getting an accurate diagnosis of damage was much more involved. I guess these tests are much more accurate than a biopsy, which only takes a bit of tissue. Because these tests looked at the entire large and small intestines.
Hi, thanks very much for responding. I am so glad there's a name for us! My concern is whether a sensitivity or intolerance can morph into celiac because I read that it can if you have the gene for it. I just read that online the other day and I don't know what's involved in getting tested. I guess if I found out I had the gene I would be militant about staying on the diet. Right now I'm not. But I just received the results of the capsule endoscopy on Thursday and I glutened myself this weekend as the last hurrah. Tomorrow I'm off to the health food store to get serious. Before I glutened myself tonight I took a Prilosec (really bad).
Hi GFinDC, thank you so much!! Actually you got it wrong. I never had diverticulitis, I have diverticulosis which, I'm told, does not go away on a gluten-free diet. Once the diverticulosis pockets are formed they're there for life. That's what my gastroenterologist told me. What did go away on a gluten-free diet is the GERD, the bloating, the stomach pain. I was able to breath easier and deeper. My anger went away. My doctor and I are doing an experiment to see if eating gluten-free stops the colon polyps I keep getting. He's such a cool doctor. I had blood work done in August 2012 and that test showed low Vitamin D and iron. It's too soon to redo that test. I was able to stop Prilosec and some other meds my old gastro guy gave me. My primary said to stay on the diet and when I see him next August I'll have blood work done again. Truthfully I'd rather wait and give my body time to heal then rush into more tests at this point.
Hi Mushroom, you're right, I've been very inconsistent. I can't change the past but now that I have been through all this testing which, by the way, thankfully showed no damage to my small intestines, I'm ready to get serious. And yes, the reason does make that much difference because I read that gluten sensitivity (or intolerance) can morph into celiac disease if you have the gene for it to do so. I don't know how accurate that info is but I read it several times on different celiac websites. So first of all I'm trying to find out if that info is correct. If it is, I will ask my doctor to test me for that gene. If that info is not correct (as much of the info out there is) I don't have to be as concerned about every little glutenous crumb. Because I do feel so much better gluten-free I will never go back to my old eating habits. It's like peeling an onion. Every layer tells another story. Thanks for your input.
Hi, several months ago I joined this forum thinking I had dermatis herpetiformis. I was absolutely miserable. I had many of the gastro symptoms and an incredibly itchy, horrible rash on my arms.
It turned out not to be DH but my gastro problems persisted. But when I ate gluten free, the gastro issues were virtually non-existent. I was not going back to eating gluten just to test, especially since I had read that the tests were unreliable.
My last colonoscopy and endoscopy (August 2012) showed major diverticulosis, among other conditions (including fibroids and a 'simple cyst' on my ovary. My GI guy sent me for a cat scan and ultrasound and both confirmed the above. I also had low vitamin D and iron.
My primary physician wasn't concerned about the vitamin D and iron and all my other doctors (including the 2 radiologists who read the results) told me these are common conditions in a 65 year old (which I am).
My GI guy knows nothing about gluten, or the effects of food on the gut (can you believe!!). In addition to all the other tests he wanted me to have a capsule endoscopy (where you swallow a camera and it takes hundreds of pictures as it goes through your gut).
At that point I decided to switch GI doctors and found one who works with a nutritionist who was trained by one of the top gluten doctors in the country. I saw her several weeks ago (before having the capsule endoscopy) and she put me on a strict gluten-free diet and asked me to keep a food diary of when I eat, what I eat and how I feel.
Under her care I've been feeling great and only have bloating/heartburn issues when I eat too much food, or food that's not 100% gluten-free.
On Monday I had the capsule endoscopy and got the results yesterday: 'Normal small bowel. No evidence of Crohn's disease or Celiac Disease. Probable non-celiac gluten sensitivity. Recommendations: Continue a gluten free diet.'
Can anyone offer me any advice about this probable diagnosis, what it means and how to proceed? In other words, aside from a gluten-free diet, do I have to buy gluten-free toothpaste, cosmetics, etc?
Also, this probable diagnosis was made as a result of my recent endoscopy, colonoscopy, cat scan, ultrasound, capsule endoscopy and symptoms. How accurate do you feel it is? I am not going back on gluten to do further testing.
Sorry for this long post and thanks very much for your help.