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 am really happy to have discovered this thread, though sad to see you suffered for so long. I did, too, and didn't get diagnosed until after my daughter got diagnosed. I had given up on myself, but for her, I gave it my all.
I, too, had mono twice, and wondered how a married woman, 44, could get it! The only information I could find about mono was on college websites, answering FAQs such as, "Will my roommate get mono?" and, "Can I still go to parties if I have mono?" Not helpful!
I hope the connection of celiac and mono is studied further. I've always wondered how I got it. Now I see it was celiac related.
More answers, though partial. Shadowicewolf: You were right: it is a hiatal hernia.
I had my gall bladder out 16 years ago, so it can't be that. But I would like to have an ultrasound on the left side to see if anything's inflamed.Throwing up bile seems like more than a hernia? The endoscopy was not fun - glad that's over!
I am going to try Lactaid this week and see if that helps with the nausea. Also taking Prilosec. I'd rather do things naturally, but I don't want to feel bad any longer.
I've got a partial answer, figured out by my chiropractor. I had a rib out of place. One treatment made a difference. If anyone in the Twin Cities needs a good chiropractor, who is gluten-free by the way, see Dr. Berg at http://www.essencechiropractic.net
Now, it is the nausea to figure out. I think I need to give up dairy and sugar. But Dr. Berg also suggested I be tested for Lyme.
I think having gone undiagnosed for so many years makes me immediately jump to the conclusion that it's more GI problems. Never occurred to me that it would be skeletal!
Your journey sounds similar to many of the rest of us. To me, it sounds like celiac, and yes, I have noticed increased sensitivity to foods since going gluten from 1.5 years ago. It's like removing gluten helps your system settle down, then each time you have it (or grains), you body says "No!" more emphatically each time. In any event, glad you and your son are feeling so much better. I am considering going Paleo and you've given me more reason to do so.
Good to hear you are making progress! I hope going back on gluten for a few months isn't too hard on you. (Also, the colonoscopy.)
I had the genetic test done (through MN GI Maplewood) which came back positive. Surprisingly, my insurance company covered the test. So if you still aren't finding answers, that might be something for you and Dr. O to consider.
Thank you for the update and please let me know what you find out!
I know people can come back to these threads many years later so I thought I would update it. After the ER visit, we had to go follow up with our primary care doctor. He was out that week, so I asked for the most experienced doctor they had available. So it was Dr. Hoffman at Southdale Peds (MN) who said, "I think this is stress. I could send you to more doctors and I will give you some names, but whenever I give someone a life-chainging diagnosis like celiac, I give them therapists names as well." Well, Dr. Hoffman was giving me some very wise advice. We have found a good therapist and it is starting to make a difference. I guess the lesson is do not ignore the psychological element to celiac. I'm really proud of the progress my daughter is making.
It's great that you are going to get tested. I think listening to that nagging feeling is really a wise idea.
We have had mixed results with MNGI. My daughter saw Dr. Kennedy at the MNGI pediatric clinic on University. She did the blood test, it was positive, so onto the endoscopy, which was positive. For me, I went around years and years to different doctors. MNGI was one of the stops. The doctor I saw in 2005 wanted to do a colonoscopy. (I didn't do it.) Then, this year, I was in for colitis. Of course they called for another colonoscopy. This time I had to do it and they found nothing. My celiac blood test was negative. They didn't do an endoscopy. But they DID, finally, do genetic testing. That came back positive.
What I am trying to say is that you may have to push for celiac testing. I have had other doctors call MNGI "a colonoscopy factory". Since that won't give you a diagnosis for celiac, push for celiac testing first! While you would think that a gastroenterologist would have more knowledge than a primary care doctor regarding celiac, it doesn't seem to be the case.
I hope this is helpful. Please let me know if you have other questions and how it goes on Friday.
I went down the same road. Had my gall bladder out but never got better. Finally, after 14 years and my daughter getting diagnosed with celiac, we went gluten free as a family and lo and behold, I started to feel better.
I don't know how often gall bladder and celiac go together, but it was definitely a chain reaction for me. They wanted me to go back on gluten for two months so they could do an endoscopy but I wouldn't do it. I did get the genetic test and it came back positive.