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 agree that it is more specific to Celiac than any other disease but there is a point to looking at it by a patient by patient basis. Theoretically 95 out of 100 patients with elevated TTG have Celiac but the University of Chicago used these theories to also swing the ball the other way:
"tTG are thought to be 97-98% specific, but by definition this means that 3 in 100 persons who don’t have celiac disease will have elevated tTG (biological variations, nothing more). If you consider that celiacs are 1% of the general population, it follows that out of 100 persons tested for tTG: 1 has celiac disease and 3 do not. This could mean that only 1 out of 4 of those with positive antibodies will have celiac disease as the cause." - http://www.cureceliacdisease.org/archives/faq/whats-the-problem-with-diagnosing-celiac-disease-simply-by-measuring-the-decrease-in-antibodies-once-someone-switches-to-a-gluten-free-diet
The study you read with 75 percent specificity may have come from me, I had an article on hospitalized patients with life threatening infections/conditions not related to Celiac and although they did end up finding some undiagnosed Celiac they also saw high elevations during hospital stay. These antibodies also respond to inflammation, I recall talking to a surgeon at a dinner gathering once and he brought up how they use some specific autoantibodies to help them know how the surgery went. For example, people undergoing intestinal removal and receiving ostomy bags have a high rate of elevated TTG.
Yeah but there is a long list of things to investigate before claiming someone is "just in denial". It looks to me like the original poster probably has Celiac but I find Takala constantly makes posts that are so ignorant and inflammatory so I was going after that. To just group everyone who has looked at a wide spectrum of issues WITH their doctors and ruled at Celiac as just in denial would be no different than if someone said everyone on this forum is just extremely bitter that they have Celiac so they want to believe everyone else to have it to feel less alone and isolated, simply just to comfort themselves. We are just in denial about how rare the disease is. Do you see how that comes across?
What? So people have inconclusive tests and follow up tests come back negative while their not so related to Celiac symptoms DO NOT improve on a gluten free diet and you think that it means they are just in denial about having Celiac? This, as many of your posts do, shows how little you know about the blood tests or OTHER diseases/issues that go on in the intestinal tract. So if someone has a positive TTG, negative biopsy, no improvement on a gluten free diet, return to gluten with no symptoms and have follow up tests while eating gluten for several weeks which come back negative they have Celiac? Did you really type that out, look at it, and thought it made sense? In the case you just described there are SEVERAL diseases that can elevate a blood test, so instead of looking at other things like Crohn's, autoimmune liver the person should just fixate on a single blood test and disregard that they do not improve on a gluten free diet while ignoring a more logical cause that could do them harm if not treated? Yeah, that makes a lot of sense.
Sounds like your "Doctors say anything over 10 on blood test is early diagnosis of Celiac." Kristin, please ignore Takala, he/she likes to just make ridiculous blanket statements, really makes it sound like everyone has Celiac.
What researchers are now starting to notice as the TTG tests have been around on the market longer and more research/clinical trials have been completed is that it is not as specific to Celiac as once thought. That being said you COULD still have Celiac that was missed, especially if you noticed symptom improvement that quickly. There is a long list of intestinal issues that can elevate the blood tests including infections. It is hard to say in your case since you went off gluten and only ate a bit prior to the endoscopy, the damage could have been so minimal that it was missed but it is important to know what is going on in your body not to miss anything that can cause complications if left ignored.
The list of TTG elevations includes (but is not limited to):
Thyroid autoimmune, both hashimoto's and Graves
Type 1 diabetes
Infections - Surprisingly both intestinal and no intestinal - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2810390/
Chronic liver cirrhosis - http://www.ncbi.nlm.nih.gov/pubmed/15936306
Congestive heart failure - http://consults.blogs.nytimes.com/2010/01/12/confirming-a-diagnosis-of-celiac-disease/
A few other intestinal issues that I can't recall right now
Pretty much any other autoimmune disease
I linked a few articles to give you a better understanding, I have quite a few more if you need more info on a specific cause. The causes of most elevations would be pretty obvious like infections and their sudden onset of symptoms, congestive heart failure, type 1 diabetes. Some however are not so obvious and that is why anyone with any understanding of blood tests will tell you that the TTG IgA is not solely specific to Celiac. It is important to also have the titre, in high tires other causes are less likely where as mild elevations need to be looked at further. It is unfortunate that your doctor told you to go gluten free before getting more tests in as now you are left wondering. Hopefully you find your answer soon and if going gluten free makes you feel better than do it, who is to tell you otherwise?
Ok, well Lupus at 48 is rather uncommon. Even if you did have Lupus, why would you end your life? Would you really want to succumb to this? You have to be stronger than that! My grandfathers brother had Lupus, guess what age he lived to? 92, no I am not kidding you NINETY-TWO. My grandfather who was perfectly healthy lived until 88. Lupus is known to often go into long periods of remission in which some people can even reach nearly a decade of symptom resolution. Would you rather not have it? Of course, everyone on this forum would like to be able to eat gluten without it destroying their intestines but you learn to cope and you become stronger because of it.
You sound like you are in awful shape right now, so it can only get better from here. If you get diagnosed with lupus, well guess what? You get treatment, and it will help push it into remission. At this point, it is only upwards for symptoms so don't give up and don't even think about ending your life because of it! There are a lot of people here that have multiple autoimmune diseases, they are all doing fine.
Go look through my old threads about my panic about Celiac when I was first faced with it's probable reality, I look back on those posts and laugh now. I also had a childhood friend that was diagnosed with Lupus very early and he is as healthy as anyone else, in fact at this point I would say he is in much better shape than me and most of my friends. The anxiety and depression that come with being newly diagnosed are temporary, you are in a TEMPORARY state of mind right now so it is very important to not act out in any harsh way because of it.
Robb, I am really sorry to hear how poorly you feel, hopefully you can get to the bottom of it soon.
The thing with the gluten free diet is that it does not require a prescription.... You are free to do it on your own, so why not give it a try? Desperate times call for desperate measures and you can very well have NCGI. That being said I think it is important to not put too much weight into gluten intolerance as there are many other things that need to be evaluated.
For your free levels of thyroid, your T4 feeds your T3 basically and your T3 is what your body uses. So the lack of proper binding of T3 from T4 is usually what will cause the symptoms. Now the thing is that they are just beginning to discover that having elevated thyroid antibodies (Thyroid peroxidase, Thyroglobulin) will also cause the symptoms. You have to remember, when an autoimmune disease begins it is not just one big attack and then the organ/gland is left completely useless, it takes time. So for all we know, without having the antibodies tested, is that you are in fact in the beginning stages of Hashimoto's.
Another red flag for me is that even though your thyroid levels are in the "normal" range they are getting pretty close to the bottom of the range, especially the T3. For those reasons I would recommend insisting on the antibody tests that I just listed. There is a poster on this forum that got a diagnosis when her blood tests were positive and if I recall correctly her thyroid hormones were still normal but in the very low normal. Her username is nvsmom, you should contact her to get some info as from what I read she has responded well to treatment. Ideally, you want your T4 to be around 50 percent of the range while your T3 is the upper 66-80 percent. Most patients feel best at these levels.
Also, have you had the ANA and other associated antibodies looked at? Your symptoms also ring the lupus bell to me.
"Anti-CCP is a very useful test to order during the diagnostic evaluation of a person who may have rheumatoid arthritis. If present in such a patient at a moderate to high level, it not only confirms the diagnosis but also may indicate that the patient is at increased risk for damage to the joints. Low levels of this antibody are less significant. In the past, doctors relied on another antibody, the rheumatoid factor (RF) to help confirm a diagnosis."
You had two positive tests that were very specific for Rheumatoid arthritis, it looks to me like that is your issue. Has your doctor diagnosed you with R.A? Here are the symptoms:
Stiffness: The joint does not move as well as it once did. Its range of motion (the extent to which the appendage of the joint, such as the arm, leg, or finger, can move in different directions) may be reduced. Typically, stiffness is most noticeable in the morning and improves later in the day.
Inflammation: Redness, tenderness, and warmth are the hallmarks of inflammation.
Swelling: The area around the affected joint is swollen and puffy.
Nodules: These are hard bumps that appear on or near the joint. They often are found near the elbows. They are most noticeable on the part of the joint that juts out when the joint is flexed.
Pain: Pain in rheumatoid arthritis has several sources. Pain can come from inflammation or swelling of the joint and surrounding tissues or from working the joint too hard. The intensity of the pain varies among individuals
If I were to guess I would say that you have both Hashimoto's thyroiditis (autoimmune hypothyroid) and Rheumatoid arthritis. You already have your diagnostic tests for RA so start with that treatment and get the following done for your thyroid: Thyroid peroxidase ab Thyroglobulin ab Free T4 Free T3 TSH
I had a friends father who had both hashimoto's and R.A and your symptoms are dead on with what he had. Luckily, both can be managed with medication and some lifestyle adjustments. With a negative Celiac blood panel and biopsy I think it is pretty safe to write off that being the issue, do you know which tests they ran? It would be helpful if you could post up all results of your autoimmune tests.
As Nicole said, you need to let us know which test it is. The anti-gliadin test does not differentiate between autoimmune and non-autoimmune gluten intolerance (Celiac, vs. NCGI). Although both can cause the same symptoms NCGI as we know it does not cause other complications or issues if gluten is ingested while Celiac can trigger other autoimmune or even cancer if not managed by a gluten free diet. In that case a biopsy would be necessary in order to evaluate which issue you have for the peace of mind.
Type 1 diabetes associated and tissue transglutaminase autoantibodies in patients without type 1 diabetes and coeliac disease with confirmed viral infections. http://www.ncbi.nlm.nih.gov/pubmed/22585721
Helicobacter pylori infection is associated to increased levels of tissue transglutaminase in gastric mucosa cells http://www.gastrojournal.org/article/S0016-5085(01)83332-1/abstract
Anti-transglutaminase antibodies in non-coeliac children suffering from infectious diseases http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2810390/
It is well known that autoantibodies can be elevated during infection (remember, that does not mean it always is). There are many other studies showing elevated autoantibodies "specific" for other diseases too if you do some google searches and look through NCBI.
The problem with the TTG is that it is still relatively new when thinking about how long it has been on the market to be evaluated during other illnesses and diseases. Just like any other product created, the TTG is manufactured by a private research laboratory and is sold to testing labs and doctors in the same way a salesman would sell a car. They will market it in it's best possible light to get the sales while obeying relevant laws and requirements. The issue is that over time many of these tests are found not to be as accurate as they were once marketed.
The reason your biopsy was negative was because you were gluten free for 2 years before, unless you had refractory sprue there is no way your intestines would had not fully healed on a strict gluten free diet.
When your new doctor speaks of your blood tests I wonder which ones were given. While the DGP is very sensitive and specific to Celiac it was not around when you were tested and it is now well known that the anti-gliadin is not an accurate test at all for Celiac. Also, when he says you don't need to have villi damage to have Celiac he is wrong. Perhaps he meant to say that the damage could be missed during biopsy or if the disease was caught very early before too much could be done? Celiac is the destruction of the villi which causes a wide range of nutrient malabsorption which in turn leads to all the possibilities of symptoms that Celiac can bring
It is not uncommon to have other issues along with Celiac so don't just assume all of your symptoms are due to one cause.
Were your gliadin test results "anti-gliadin" or "deamidated gliadin"? Anti-gliadin does not differentiate between autoimmune and non-autoimmune forms of gluten intolerance. That means that both Celiac and non-Celiac Gluten Intolerance as well as some "healthy" population samples will show up positive on the result while the deamidated is pretty specific to the autoimmune form, aka Celiac.
Doctors would call that "biological variation". I don't think the test will be positive for absolutely no reason however it is elevated in MANY different disorders and infections. Studies have shown transient elevation during an infectious illness and it is notorious for being false positive in those with other autoimmune diseases (20 percent false positive rate in type 1 diabetes). The problem with starting a gluten free diet off the result right away is that you won't know if it was just a variation or if it was in fact early Celiac when it goes down. At this point, it is a patient by patient basis and it is important to take into other factors to make a decision for that specific person.
What may appear as "no reason" may be something that slipped the patients mind, perhaps an infection from a month or two ago, it could be a viral illness that wasn't too noticeable to the patient etc... Thyroid peroxidase for example can actually see slight elevations during the common cold. The titre of the antibody is big too for determining the cause, if it is 10x the positive limit then it is doubtful for other issues to raise it.
The Chicago Celiac center says that family members of Celiac patients can have an elevated TTG for no reason, in that case keeping an eye on symptoms or any other clues leading to possible Celiac along with periodic blood tests (could be with your yearly physical) would be an ideal way to handle it.
Although it seems extremely likely that you have the disease due to your symptoms and your daughter having it (was she biopsy confirmed?) I still have to inform you that all of these take home gluten tests are next to useless. There is a reason these tests are sold directly to the public and not adopted by the medical community - they are garbage. Of course these sketchy institutions always have these "clinical studies" that conveniently are never peer reviewed or published for anyone's viewings, it is just a marketing ploy to make money, just like any other business.
Here are the blood tests you need, demand for all of them since your doctor seems like he likes to cut corners and be lazy:
Total Serum IgA
Deamidated Gliadin IgA
Deamidated Gliadin IgG
Tissue Transglutiminase IgA (With the IgG version if you are total serum IgA deficient)
If you have Celiac there is a 98-99 percent chance you will score positive on at least one of these tests as long as you have been eating gluten daily for around 3 weeks or more and have IgA sufficiency. If you somehow get negative on all of them which is highly unlikely I would recommend going for a biopsy as you seem to be in a higher risk group and there have been members on this board that have been that 1-2 percent to score false negative for no known reason. If both blood tests and biopsy are negative despite adequate amounts of gluten and biopsy samples being taken you should consider non-Celiac gluten intolerance in which the only real test for that is a strict gluten free trial.
That is a very high result. Keep in mind TTG can also be elevated in Crohn's, which your mother had. Along with the biopsy it will probably be worth your while to get the Deamidated Gliadin IgA/IgG tests along with the endomysial. That will help isolate the potential causes.