Ttg Iga Levels Increasing in Post Diagnosis, Recovery & Treatment of Celiac Disease Posted May 31, 2009 · Report to Admin Knowledge is power. I will ask some more directed questions at my next visit. My doctor is convinced that I am ingesting gluten somewhere and I will pass on the information you have shared with me to get some additional tests run. I've only had a TSH run. I definitely need the whole panel forThyroid and Celiac. I haven't seen my rheumatologist for several years. Maybe it's time for a revisit there too. I want to feel better and get back the energy consistently that I know I have. I have two beautiful grandkids that I want to enjoy to the fullest. I will try to exercise more. I must admit when fatigue and joint pain hit, I don't feel like getting out there and walking, biking although I remember I usually feel better when I finish. I guess I'll have to make exercise a must do every day. Like you, I've had Celiac for YEARS without getting diagnosed so I'll be patient and hope for the best. Thanks again for taking the time to help me through this crossroad. Do not be chagrined about anything.....there is a long learning curve to getting this disease right and absorbing all the information about autoimmune diseases. It's extremely important to do so because you need to be your own advocate with the medical profession because they do not always get it right.....especially with autoimmune disease. You will learn very soon that they are still in the semi-clueless stage themselves and we have a long way to go before the door is unlocked on them. The names of the tests I gave you are from one of the leading labs which test for celiac disease....it was the lab I used for my testing. I know sometimes other labs will give a different name to the same test so that is why I was asking. However, I do know that tTg is used as a measure to gauge intestinal damage and other tissue damage in the body. As I mentioned, other autoimmune problems will raise a tTg blood level. So I was confused as to why your doctor kept referring to it as a tTg level because that will not tell you if you are still ingesting gluten. The other ones I mentioned are the standard for that. You are very symptomatic, like myself, if you ingest gluten and have said you are very diligent about avoiding gluten ingestion, like myself, so I think you seem to have a pretty good gauge about the whole thing. Of course, in the beginning, anything's possible but too many doctors and people with Celiac get hung up on the fact that they must be ingesting gluten if they still have symptoms or wonky blood work. Not so. I have Celiac, Hashimoto's thyroid disease, Reynaud's Syndrome and Sjogren's Syndrome. I also have a sky high ANA and RF factor, yet have no symptoms related to other diseases this may indicate. I am still trying to figure out if these high numbers have a predictive value to them for other disease or if they are high because I have so many autoimmune problems. The chicken and egg theory...... Symptoms can overlap with autoimmune problems so it can be very difficult to pinpoint which disease you may have or if there are multiples. Joint pain, in particular, can come from Celiac itself (especially accidental gluten ingestion), Sjogren's, Rheumatoid arthritis or from a thyroid which is out of wack. My joint pain went away when my thyroid was treated but I have been having a little of it again lately. I am also in the midst of tweeking my thyroid meds because now that I am recovered and absorbing, the dose I had been taking was way too high and I went seriously hyper-thyroid.....no fun at all. So it's a crap shoot......once my thyroid is adjusted again with the right dose meds, I hope my mild joint pain goes away again because if not, that high RF factor might indicate Rheumatoid arthritis. It is not all gloom and doom, though....I am an optimist and refuse to let multiple autoimmune disorders get me down. I find exercise very good at helping my mind keep calm over all this. A good walk in the woods can do wonders! I would seriously ask your doctor to re-do the WHOLE Celiac panel before he starts on about gluten ingestion. Have your thyroid tested too....the WHOLE panel. Your joint pain and fatigue could very well be from gluten ingestion but mine was not. I was as good about it as you seem to be and it just took about 3 years for me to heal into being asymptomatic. But tweeking may need to be done from time to time. Have patience because it can take a long time to heal to the point where you feel normal again. I was 46 at time of diagnosis and went 20 damn years with in-your-face symptoms before I actually figured it out and went to the doctor's and requested testing. Something is very wrong with that picture! If you have any more questions, feel free to ask. You know, after thinking about it, I think I can see why your doc is testing tTg. He probably figures if your tTg is still in the higher range, it must be coming from gluten. It's a poor way to gauge accidental ingestion because that higher number could mean something else entirely, as mentioned above. Ask for the tests I mentioned and do not take no for an answer. However, if you went a long time before diagnosis, be prepared for the potential for more autoimmune problems. I will say that because I am so strict about my diet, I live a normal life and have many of my issues well under control. It can be done. All I can hope for is that it stays that way!