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
There were no other findings except those listed. They said (based on the tests they did do) that he did not have celiac. I knew they told him he did not have it but tonight was the first time I actually saw the report and the tests they ran. I questioned them too. I really hope we can get him in to my doctor soon. I started a gluten free diet in May 2010 but did not have the tests until Sept. or Oct. but they were still positive. My M.D. is very good and seems to be very thorough and unlike many, he does not dismiss celiac. The G.I. group (he and I both saw) both said we just had IBS. I know for certain they were wrong with my diagnosis.
My son-in-law has been sick for several months...he actually started getting tested around the same time as me... last back in Sept. or Oct.
He was tested for celiac in November of last year by the same GI group that I went to who said IBS...Intestinal B--- S---. Sorry, but it just means there is something there but they don't know what it is. My GI didn't do/find anything but my M.D. did.
Anyway, back to my son-in-law.
Here were his test results. They did not give him actual numbers so he really has no way of knowing how close to the normal range he was/wasn't.
Test Results Range
Reticulin IgA Autoabs <1:10 titer <1:10 titer
Endomysial IgA Autoabs <1:10 titer <1:10 titer
Gliadin IgG Abs (HIGH) 14.7 U/mL <10.0 U/mL
Gliadin IgA Abs <5.0 U/mL <5.0 U/mL
Results from other tests:
Grade I nonerosive esophagitis of the distal esophagus
Duodenitis of the distal duodenal bulb
Colitis of the rectum (What is colitis of the rectum? Isn't colitis colitis???)
Moderate non-bleeding internal hemorrhoids
Mild to moderate systemic disturbance that may or may not be related to the disorder requiring surgery (???)
I have other test results from him as well but don't know if they would be helpful...CBC and others
He has upper, mid, and lower stomach pain, indigestion, back pain, digestive issues including constipation and diarrhea. He has tried to do without dairy, wheat, etc. but without a doctor giving him any answers, he hasn's stayed with any of it long enough. He has been off dairy again for about a week and is getting ready to try to get off gluten. He's trying to get an appointment with my M.D. but he didn't have any openings until the end of May. I'm trying to see if he has any openings sooner.
Sorry this is so long but I am trying to help him figure out what is going on. While I have no clue if he may have celiac, his symptoms (didn't list them all) sound so much like the all the symptoms I had and still have at times.
Would greatly appreciate your thoughts and advice!
I don't have 24 hours to pre-med before the test but I do want it to show up as clear as possible if there are issues. I'll talk with them so they can be ready just in case. I don't know what else to do at this point. I have to know...everyone here probably knows how I'm feeling.
And I agree...at this point I don't care what the biopsy showed as I know sometimes they can't get the right spots for biopsies. I felt better than I had in years until the H-Pylori reared it's ugliness...just haven't been the same since. My husband (very skeptical in most newer medical diagnosis) also sees the differences since being gluten free. It's been 8 months now and I'm still going.
Leaving in fifteen minutes to get prepped for the CT scan. Don't know how long it will take before someone actually lets me know...probably another $30 copay to my GI. LOL! It's not so much the $30 as it is the time away from work.
Hi again...it's me. I got the results of my biopsy today and they didn't show anything. I didn't expect them to actually since I've been gluten free for almost 8 months now.
Is the Anti-endomysial antibody (EMA-IgA) and the ELISA the same test? My GI sent me for more tests today, one was the anti-endomysial antibody test. The phlebotomist had to calls someone (the lab?) to find out which tube and how much they needed. That made me feel quite confident in the test process
Atually, I went gluten free in May. In August I got sick again...partly from H-pylori. I did cheat once after vacation because I felt so bad and I didn't know why and nothing sounded good to eat except something really bad...a patty melt from Steak-n-Shake. So other than that one time (to the very best of my knowledge) I have been gluten free for over 7 months...and dairy free for almost 4 months since I read that it can hinder the healing of the villi.
And yes, the chance of a false negative is what worries me. That's why I thought about eating 'bad' for a couple days hoping that might show more in the biopsy. But it's scheduled for Friday so I doubt I would have enough time. I still have the gut issues too. That's why I'm trying to learn. I felt fantastic until August, then when the h-pylori happened, everything else seemed to fall apart. I stuck with the diet. You know, I just want some sort of definitive answer. I wish I knew back in May to go straight to the doctor but I didn't think they would test for celiac and I've been so tired of wrong diagnoses in the past that I just did it on my own. As you all know...it's sooooo frustrating.
Your post is very helpful. While I use lots of dishwashing soap and very hot water, I do use the same dish rag and towels to wash/dry. We don't have regular flour in the house but my husband does eat cookies (Oreos, etc.) and other snacks and cakes. I never really thought about this.
Also, I might give my husband a quick kiss after he's munched on cookies or drank a beer or something like that so the lip thing is a possibility.
I also have had a lot of the neurological/psychological issues. Several other doctors have had me on antidepressents over the years (which I stopped close to a year ago) as this particular doctor said I was not depressed just very full of anxiety. I still take Xanax, both a time release and one regular in the a.m. Without it, I would be so stressed I don't know if I could stand the day...I know others couldn't stand me. LOL! And with the RLS, TMJ, fibromyalgia pain, etc. I was also on Lyrica which I stopped. I had side effects from that too...can't really remember now what they were. Anyway, my point is that I can relate to what you are saying.
You mentioned that you do not have Soy in your home. Is that something that is another common allergy for celiacs? After I stopped dairy, I started drinking vanilla almond milk in the morning and I carry one of the small soy milks in my lunch just in case I feel like I need something extra.
I have my endoscopy Friday with biopsies of the small intestine and the stomach. I'm really tempted to go get a big burger with a bun just in case it might show up more but I don't like the thought of what it may do to my body (cramps, etc.)
Thanks so much for your post!!! It does give me hope. I don't particularly like the time frame... ...but it helps me know I may just be normal.
(Oh yeah, when I went for the consult with the G.I. specialist, he suggested it may just be IBS. I told him what I thought of IBS and anything else that was just called a 'syndrome'. I told him it was nothing more than a catch-all for "We don't know what it is so this is what we are going to call it." See, that's the way I feel about the fibromyalgia too. I realize that the problem is really existent...I know it...I feel it...but don't treat the symptoms, find out what's wrong. I know there are things a lot of medical professionals are just not as educated about as others so if that's what he says, I'll go to a different G.I. specialist.)
Yes, over three months gluten free. I'd been doing my own research including here on celiac.com and I knew something was wrong with my stomach. I've always had anxiety/nervous stomach issues so one doctor (though a very good doctor...just not educated with celiac...but he will be when I go for my annual physical) would always want to treat the symptoms, although he did check for lupus.
So, early in May, I started gluten-free and later added dairy free after learning about how it hinders the healing process. I got so much energy back. I started dropping weight. Many things changed. The fibromyalgia symptoms were gone. If I had not become sick while on vacation in August, I would have probably never been tested.
But something happened and I really started feeling bad about a week before vacation. I didn't have as much energy as normal...not even as much as in previous years while eating gluten. After vacation it just got worse. First I called the doctor above and got an appointment, but after giving it more thought, I called another doctor closer to home...not my 'official' pcp. He knows I don't want meds, he had previously been in a pain clinic treating fibromyalgia, and he doesn't just treat symptoms...he looks deeper for the cause. He's awesome! I can email him about what is going on and he answers my email...during his lunch hour, after work, etc.
Anyway, I could go on about my doctor. He's in Hendersonville, TN and if anyone in the area needs more info, I'd been glad to give his name. I called him after calling my 'official' pcp and they had a cancellation the next morning. The rest is history. I still tested 'slightly' positive...enough for me as I know how I felt before gluten-free and I don't want to have to do the six week thing to get higher results...plus I had h-pylori. I took antibiotics for that but couldn't finish them and have been concentrating on eating better ever since.
I think I have every kind of flour available with the exception of regular, white (wheat) flour. The cookies were Toll House...the kind you just take out of the package and bake. But they were really moist and I don't know if you can or can't absorb that way. I have heard both ways.
I am going to get some plastic gloves like you would wear in a restaurant and I will try to find some type of mask for when I'm cooking for my husband or others. I do wipe down with soap and water or more often with a multi-purpose cleaner. Besides constant washing of hands, I've also become a hand-sanitizer nut. But I didn't realize about what might be airborne.
Thanks for the help. My G.I. consultation is tomorrow. We'll see what happens next. :-)
Hello, I posted this a couple days ago but I think I posted in the wrong category. I've been reading from this site and forum for several months but never posted here before.
Please see my post below. In addition, I didn't mention that on Thanksgiving Day, after preparing dinner but before even serving it, I began having horrible stomach cramps and spent the rest of the evening either on the toilet with diarrhea or doubled over on the bed with the heating pad. I didn't eat anything that day but I did make cookies and other items that were not gluten free. I've read both that you can absorb gluten through your skin and I've also read it isn't absorbed through the skin. I have no idea. All I do know is something that day did me in and it wasn't anything I ate. I washed my hands after handling cookies, etc. Any help with this and my earlier post, below, is greatly appreciated.