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 started having pain in my joints about 4 years ago, a year before the popping started and a year before I had any significant GI issues. (I also had issues throughout different periods of life when I did have stomach problems, but it had been years since I had any that would be very concerning. I have always felt bloated as well.) It wasn't bad joint pain, but enough to hinder my yoga. So I went to a Rheum who ran lots of tests and didn't find anything. He said I was just getting older and needed more time to recoup after work-outs and long hikes. A year later I woke up one morning with severe debilitating joint pain. It happened that fast, from annoying pain to not being able to get out of bed without help, overnight. The popping started at that time. In the three years that followed I saw numerous doctors who could not explain my pain. I was diagnosed with RA, Fibromyalgia, Chronic Fatigue, Complex Regional Pain Syndrome, Chronic Pain Syndrome, and the "worst case of bursitis". All of these diagnoses were overturned by the next doctor. The stomach problems didn't start until about 2 years ago. Out of desperation, I tried anything anyone suggested. Someone suggested I stop eating gluten, so I did and I got 20% better. Someone else suggested I stop eating nightshades. This made me another 10% better. I saw one gastro doc who did an upper endoscopy to look for celiac and it came back normal as well as the blood test. She didn't ask me if I was eating gluten and I didn't know the test results would be hindered by the fact that I wasn't. (If you were off of gluten for 7 months, then your test could be inaccurate as well.) About 6 months ago I read an article in the New Yorker about a child who had intestinal permeability. I related to everything in the article so I started searching for a doctor who understood the issue. I found my current doctor in September who immediately realized that I wasn't eating wheat at the time of my biopsy and that the result could be wrong. She has run numerous tests. The most significant for her diagnosis of celiac were a Lactoferrin test and the genetic test for celiac. I wanted to eat wheat and have the biopsy again, but thankfully she stopped me. The Lactoferrin test showed inflammation that could only be caused by a GI inflammatory process. She said this meant Crohn's or IBD or Celiac. In the genetic test I only had one positive HLA rather than two. But with the two things together, and my response to being off of gluten (sort of) I was diagnosed with Celiac. I was avoiding gluten like I had an intolerance rather than celiac, since I had the previous negative biopsy. For example, if I went to Chipotle, I would order the things without wheat, but the spoon would touch a tortilla from the person before me before touching my food, contaminating my food with gluten. So I've just been eating completely gluten free for 2 weeks and so far I haven't had any improvement. She also put me on lots of supplements to help heal my digestive system. She thinks I'll see some pain relief in 3 to 9 months, but said it could take longer. In the meantime, I'm not allowed to eat gluten, dairy, soy, corn, nightshades, eggs, peanuts, and oats. She's considering limiting my diet more in the future, depending on how I respond.
I would really consider thinking of myself as having celiac disease if I were you. It can't hurt to do the diet, but it is difficult. I've had to buy new things for the kitchen, like blenders, colanders, and cooking utensils because they may be contaminated with gluten. Thankfully my husband decided to be gluten free with me, so the threat of cross contamination is eliminated. Here's a list I found recently of symptoms of Celiac on the University of Chicago Celiac Disease Center website. www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf I think this disease can have really varied symptoms in different people and I've seen others post here that have no GI symptoms. I used to have ulcers in my mouth all the time as well, until I ate gluten intolerant. They completely went away after that. You could look for a doc who understands intestinal permeability and then go from there. I really tried to do it on my own, but was missing key steps. I read studies, and watched Youtube lectures by Dr. Alessio Fasano from the University of Maryland School of Medicine. He discovered the protein, Zonulin, that modulates the permeability of the intestinal tract. You could research a little more about intestinal permeability (leaky gut) to see if any of your symptoms are included. I'm happy to answer anything else that I've gone through if it helps.
I was diagnosed with Celiac 2 weeks ago. I have severe joint pain with popping in almost every joint. I've had it for 3 years. My doc (integrative) thinks this is related to the celiac and will get better over time. She did caution me that there is gluten in the most unsuspecting places, like toothpaste. She also warned me that if I'm sharing a kitchen with someone who isn't gluten free, I may be exposed to cross contamination. Maybe your doing everything right in your food choices but gluten is getting in somewhere else. The popping is quite painful. I'm sorry you have it too.