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've already made up my mind to eliminate gluten regardless of a diagnosis and I agree with the new doctor. I was very disappointed with him. I completely understand that celiac may not be my issue but for him to disregard it so quickly was very aggravating. I think I will stick with having the upper and lower GI Tuesday, couldn't hurt since I've never had either of them.
A little disappointed in my GI doctor and who knows maybe he's right with everything he said but it just didn’t sound right and then again I’m no expert.
We discussed all my symptoms and he reviewed my blood tests results. He explained that just because I have the genes does not mean I have celiac disease, which I already knew. Then, he said you must have 3 things to get diagnosed with celiac disease: 1) symptoms, 2) positive blood tests, and 3) positive biopsy. He said since I didn't have a positive blood test, then he doesn't think celiac is my issue and started discussing fibromyalgia and crohn’s disease. Kept pushing those even when I explained that when I ate low carb, I had NO ISSUES… NONE. Now correct me if I’m wrong because I know nothing about crohns disease or fibromyalgia but would eliminating carbs correct crohn’s or fibromyalgia?
Fibromyalgia - really?? I don’t think so. My back hurts because I have bulging discs and degenerative disc disease and my knees hurts because I have too much weight on them and my patella’s sit too high (both my children have the same issue and must wear braces for sports). He wouldn’t listen to those reasons.
Crohn’s Disease – not sure. After looking it up in the internet, I have some of the symptoms but not many. Mainly abdominal pain and cramping.
He has set me up with an upper and lower GI and told me if both of those didn't find anything then it's probably just IBS. Told me I was probably lactose intolerant and how to do a self test on that. We discussed the possibility of a vitamin D deficiency and told he to have it checked the next time I had blood tests done. I asked what other vitamins I should check and he said none. Vitamin D was the one he thought I was low on.
Am I crazy? Should I be concerned or not? I feel like because my blood tests were negative, he has already made up his mind that I don’t have celiac even if the biopsy come back positive.
I am currently doing a gluten challenge and going through all the tests. I didn't make it long, 2 weeks, before giving up and having the blood tests. They were negative but the genetic test came back positive. I go this morning to see a GI doctor. Really wish now I would have waited longer but after several late night episodes, I became very frustrated and aggravated with all the issues. I have not stopped eating gluten and like the previous poster, my symptoms vary from day to day. The 2 symptoms consistent daily are the tiredness and brain fog. A diagnosis isn't important to everyone but is to me. I'm afraid if I don't have the diagnosis, I will not stick with it longer term or make it a permanent lifestyle change.
Finally, my appt is almost here!!! Not exactly sure what to expect tomorrow but glad it’s almost here. Made this appt at the request of my doctor after my blood tests came back negative but genetic tests were positive. Low carbed for 6 weeks prior to blood tests and felt great. Ate “normal” for 2 weeks before giving up and having the blood tests. I know I should have eating gluten longer than 2 weeks. After several late night episodes, I hastily made the decision to have the test done then. Now, I’m just ready for a diagnosis (good or bad) so I can move on. I have felt so bad for the last 4 weeks. Tired of being tired and feeling puny all the time. Tired of the many gastro issues. Tired of the all it. Uuuggghhh!!!!!
Sorry…I know I’m whining. L I’m beginning to feel like Debbie Downer.
I had blood tests for celiac done almost 2 weeks ago and they came back negative. My doctor did the full panel of celiac tests, including the Celiac Disease Comprehensive Cascade. Although my blood tests came back negative, I did have genes and/or gene pairs. I follow up with a GI next Thursday.
Have you thought about diet elimination? Couldn't hurt at this point. Hope you find relief and more sincere doctors soon.
I'm not sure what tests, if any, the GI will perform or request.
From the research I've done on the internet along with this site, I feel I do have at the minimum an intolerance. It just amazed me the difference in my gastro when I ate low carb. I did find that if I injested too many sugar alcohols (the low carb/sugar free candies and bars) my symptoms would come back just not as severe. I can handle this but it does scare to think my son may be going down this same road. His issuesare the same as mine just not as bad right now.
The only family member that has been officially diagnosed is a cousin about a year ago. My mother had many stomach issues accompanied with many surgeries. She was a diabetic, asthamtic, and a breast cancer survivor who battled many stomach issues from vomitting to diarreha daily. She passed 7 years ago at the age of 58 and I've wondered if she had celiac. My grandmother passed this year after being diagnosed with stage 4 colon cancer. Same as my mother, she battled stomach issues as long as I can remember. Looking back after reading so much concerning celiac, it just makes me wonder if celiac could be tied to thier issues.
I had blood tests done last week and the results were made available to me Monday. Doc said the tests were negative but genes were present and referred me to a GI for follow-up.
Here's a little background. I was diagnosed with IBS years ago and told to stay away from leafy green veggies, chocolate, carbonated drinks, and so on. I didn't listen just dealt with the usual side effects. A year ago, I had a cousin diagnosed with Celiac and began researching to help her mom. I was shocked to see the similarities between to two. All of my symptoms were the same as celiac symptoms. I've joked ever since about being tested but never have. After a month of low carb eating with no symptoms, I decided to return to eating what I had previously considered normally to have the tests done. Everywhere I read stated to not change your eating habits before being tested. I informed the doctor that I had been eating low carb and asked how long I should eat normal before being tested. He said because I didn't completely eliminate gluten that I would be fine to have the tests now. I waited a week be the effects became almost too bearable.
For years, I have lived with:
Bloating, flatulence, stomach cramps (sometimes very severe), diarrhea, constipation, fatigue, brain fog, noises from my abdomen after eating (embarrassingly loud), insomnia
Symptoms I wrote down after returning to eating “normal”:
Mouth sores, acne, restless leg syndrome, joint achy, irritability
Here are the tests results:
<20.0 (Negative) unit(s)
<20.0 (Negative) unit(s)
<4.0 (Negative) U/mL
<6.0 (Negative) U/mL
Celiac DQ Alpha 1
Celiac DQ Beta 1
Celiac Gene Pairs?
Not sure exactly what this means other than, I see negative by most of the results. His comments were "The blood tests were negative but genes were present. Would see a GI for further advice".