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
If the gluten free diet helps you, I hope it works out like it did for me. I used to have 2-4 lung infections a year. Ex-doctor never thought twice about it. But I have them no more took me about a year to realize that the infections had gone missing!!! Frueden tag!!! Same with the sinus infections. My Pollen and mold allergies are much better, too. Was that really due to me maybe having DQB1*0301? I don't know yet.
Studying the biomedical factors of gluten sensitivity leads down many rabbit holes and time sinks. Dont stress over it. There may be a clearinghouse information of DQ and other alleles, but I dont know yet. I searched Celiac.com for "genetics" -- if there was any resource other than overviews of DQ2 and DQ8, I missed it. But this is new stuff [suggestion!]
If you know all you need to about your diet and run out of other things to do, you could search the internet for DQB1*0301 with whatever symptom or condition you are wondering about. Be prepared for reading technical papers. Thats how I study. I see that others some others do, too. I think gluten sensitivity and geekiness travel together.
I weeks ago I looked at what Wikipedia has now about HLA-DQ. There is a list of alleles and links articles on the related serotypes., e.g., DQ6 and DQ7.
I liked the discussion on Understanding DQ Haplotypes and DQ isoforms on the "DQ2" wiki page, explaining wide ranges of severity of sensitivity.
If you want to read more technical materials and fewer commercial sites, search the internet for gliadin instead of gluten. But this can take up a lot of time and may raise false or premature worries. The main thing I got out of all the reading is confirmation of how non-intestinal symptoms can associate with gluten instead of taking someones word to the contrary.
Maybe? I'm probably not the best to say. Are you asking about the pain as a celiac/gluten symptom or as a non-related pain?
This might not be what you are feeling, but I had elbow pain in the form of cubital tunnel syndrome, typified by tingling in the pinky. It was treated as if it was Carpal Tunnel. I took the arms off of my office chair. I was told to expect repeated surgery eventually. I was treated for a few months, but the pain resolved 90% or better when I started the GFD. I discussed this with Dr. Fine years ago and he mentioned autoimmune inflammation of the tendons. It would flare up from time to time on the GFD and I wondered if it was an indicator of being "glutened", but in the end I think it associates more with a big carbohydrate load in the lower GI.
I have certainly been one to wait by the mailbox for the test results.
You are fortunate to have a doctor who is looking into this. You have good, normal questions, but I wonder if it is all right to wait for the present tests to play out and you have copies of the results in hand and your doctor
Sure, if you kept eating gluten. I have read about and talked with doctors who were explicitly told in school to not waste time considering or studying Celiac Disease.
I think many of us go through that. I
Hi, I started learning about celiac disease 8 years ago reading many Celiac.com threads, but just made my first posts this week. I am sure there are many here who know more about the fat malabsorption.
My understanding is that such an Fecal Anti-gliadin IgA result indicates your intestinal tissues are producing antibodies to a particular wheat protein at some level well above the threshold of detection (3 units, IIRC). If these antibodies mix with wheat protein, they should cause an inflammatory response in your intestines. Such an inflammatory response could be expected to weaken your digestion some argue the point.
However, your Fecal Fat Score looks to my eyes as indication of one of two things, you ate a lot of fat or you are having trouble absorbing fat because of a weakened digestion. May be gluten, may be gallstones, may be something else. That should be discussed with a doctor, I should think. If I may ask, are your stools foul, gassy, and burning? Sometimes like toothpaste, sometimes lumpy with a mucousy glaze? (Thats the way mine were.)
Maybe these are of less concern if you clearly have digestive problems that turn out to respond to diet change. The equivocal cows milk IgA result certainly does not rule out the possibility of lactose intolerance.
My son has DQB1*0301, and I just started Provigil, so maybe I do too.
Curious, do you have bad daytime sleepiness or chronic sinus problems?
I never had any test, a doctor friend who is Celiac himself told me to just go on the diet for a while (after I had been expressing symptoms to him for 12 years!). He predates even the blood tests, I think. I needed to eliminate the dairy, too.
My son had the Fecal Anti-gliadin IgA at 64 Units at age five. He never had a solid stool until the GFD. tTG negative. Doctor had no interest. As infant, he had cradle cap -- either fat malabsorption or DQB1*0301?
Do some reading. There are those who are gluten sensitive but never pass muster on a Celiac Diagnosis. If I may suggest, look for posts by jcc and see what reading she recommends.
Sorry about the doctor reference, Im a nerd in Kansas.
I was attempting to be non-personal and not refer to the specific post.
However, with your observation, I see that my statement does not say what I wanted it to say and may not represent the opinions of the member, and so I withdraw and delete the comment with apologies. I hope this action is appropriate.
The price seemed about the same as other tests that were twice as likely to be wrong.
18 months* is a long time to sweat out validation from the body when the symptoms are developmental and the person can’t accurately communicate internal states. (*The CNS changes so slowly it was once presumed not to change (heal) at all -- I had a neurological change 13 months out)
Sometimes the validation by the body isn not vailable. Isn’t clinical indication needed sometimes?
So, by extension, serum AGA is an even worse predictor of outcome? So, if you need a of paper to wave at a family member or doctor to get care, I would think you would be more likely to get it from Enterolab than from, e.g., Labcorp. My point is, your advice to "save your money and try the diet" applies even more to serum AGA labs. That was the advice I took from a Celiac eye doctor in 2002, before either of us had ever heard of Enterolab.
But, that was pretty much the picture in 2004, Dr. Fine saw a number of those points before then. For example, he was
Healthy or pre-sensitive? But I get it that expression can vary due to variable mucosal state.
Primary screening for celiac and gluten sensitivity is IgA. IgA is concentrated in the mucosal tissues. Intestinal mucosal tissues are shed into the stool, but not shed into the blood generally. As I understand it, general circulating unbound IgA is exceptional. So, I think there is a reason to look in the stool for IgA AGA instead of serum.
Point me to that one. I just see these slides in the Enterolab:
Symptoms >1 Yr Follow-Up Improved Health Follow-Up Overall Health Follow-Up On these charts, it looks like everybody gets better, AGA positive or not; BUT, the best improvements correlate to going GFD, AGA positive or not, suggesting that gluten is bad for most people, which I generally accept, just more so for the DQ2 and DQ8.
BUT, Enterolab says its tests reduce false negatives by only roughly half. So, I reckon the rate of undetected sensitivities in the negative group is high, especially since I expect the rate of sensitivity to be high among those seeking the test = everybody gets better, at least that putattive 30%.
Again, I'm interested in the general gluten sensitive populations and the pre-celiac population, not just Celiacs.
Because DQ2 or DQ8 only predispose for sensitivity and classic celiac is possibly only a minority presentation of that sensitivity. That 30% seems to include gluten-moderated "non-celiac" diabetes, ataxia, epilepsy, liver disease, autism, miscarriage, and such.
Since only the beta chain that determines sensitivity, I accept that he may truly believe that people should treat the sensitivity, whether celiac or not. If he was just out for a buck, I imagine that he would peddle the not just the HLA-DQA, but also HLA-DRB, HLA-A, and HLA-B.
Compared to 10-20 years ago when the wide range oa severity was apparent by not explained by the multiple isoforms and effect of the heterodimer?
(I know this is an old thread, but forgive me for not being able to hold my tounge, as is were)
The gist I get from both sides of this argument is its all about Celiac Disease. I know that this is Celiac.com, not GFD.com, BUT its not all about Celiac Disease. My interest in Dr. Fine comes from his interest in broad autoimmune disease, not just celiac disease. When I was in correspondence with him as a customer, the discussion was about autoimmune disease, not just celiac disease.
Neither do I think his goal is the *curing* of Celiac Disease. I think his goal is the *prevention* of autoimmune disease, which includes celiac disease. (Admittedly, the thought of going on the gluten free diet to prevent celiac disease reminds me of the Elephant Gun Joke.)
He restricts his test for gluten sensitivity genes to those that are present in 99% of Celiacs. He does not test for the associated genes that affect how the gluten sensitivity progresses to various autoimmune diseases, e.g., diabetes, epilepsy, ataxia, Graves, lupus, MS, Hashimotos, microscopic colitis, etc, or effects how severe those disease will be. Since the diet to reduce the likelihood and severity of those conditions is the same, he says he can save the customer half the testing price by not looking at those associated genes. (I call then steering genes in the sense that I see them as steering your gluten response towards various organs.)
If you think it is a tough sell to get an Internist or Gastroenterologist to think about gluten sensitivity, try to get a psychologist or Epileptologist to consider it.
There is a subgroup of autistic children who are GREATLY helped by the gluten free diet and are greatly harmed by subsequent gluten challenges. How do you know your child is in that subgroup without the harmfull gluten challenge? Serum tests will not tell you until too late. Do you put him on the diet at birth with no challenge until he is 18 or 21?
Suppose there is a family history of autoimmune disease and/or autism. Do you wait for the condition to appear before you apply the diet or do you start the diet from birth? (or even before conception?) You can test your child for DQ2 or DQ8 at birth, you dont need Enterolab for that. If you find your child has DQ2 or DQ8, do you do the diet immediately or wait until there are antibodies in the blood? Still, dont need Enterolab for that.
It seems to me that what Entrolab can do is detect the development of AGA at the earliest possible stage, generally years before AGA appears in the blood.
I got to thinking about this again recently when skimming an article on Diabetes and recognized the genes they were talking about. Wow, look up newer articles on DQ2, DR3-DQ2, and A1-B8-DR3-DQ2 multigene haplotypes! -- I think the strength of gluten/autoimmune hypothesis is increasing even without his publishing.
You Celiacs think it is frustrating he has not published? What about those thinking about gluten's role in autoimmune disease in general? He is studying the ability of stool gluten antibodies to predict the development of autoimmune disease in general and he should be holding ten years of data by now! To prove that early application of GFD prevents or reduces some autoimmune disease, I realize now that he has to have records of patient populations spanning at 10 to 20 years! Most of his records must be under 5 years at this time.
But when he is asked to say why he hasnt published, he doesnt say that......