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tclarkfl

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  1. 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...... :huh: 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! :D


  2. Your comments have been so helpful! I am chagrined to say that I did not even know of the AGA IgA and AGA IgG versus the tTg that I had drawn on me recently. I truly have tried to eliminate gluten from my diet and felt that my numbers should have improved.

    I am definitely symptomatic when I ingest gluten so I know when I am getting gluten even in hidden forms. I had had symptoms for years prior to diagnosis and only when I switched GI doctors did I finally get the answer.

    I will pursue research into other autoimmune disorders. You state that you have four. Can you share which? My joint pain and fatigue have been particularly bad lately and I wonder if there is a correlation between gluten ingestion and pain and fatigue? Is this another manifestation for me?

    I will get Dr. Green's book and continue this journey. I have not been diligent enough in learning about this disease. Thank you for taking the time to share your knowledge. I plan on getting this under control as much as possible.

    To add another opinion for you to think about......I have not eliminated gluten from topical products and it has not affected my blood work whatsoever and I am completely asymptomatic. The prevailing medical information on this is gluten cannot be absorbed through the skin as the gluten molecule is too large to pass through. I have backed this information up with my practices BUT I am very, very careful to avoid any kind of ingestion or CC. Some people do not feel comfortable unless they eliminate it completely and that is a valid choice one can make. Remember, you have to ingest the product and it has to get into your GI tract for an autoimmune reaction to occur. Otherwise, it's not an issue and will not elevate blood work levels.

    I also color my hair every month and have had zero problems with that also. As hair color is not something a person EVER wants to ingest from a health point of view, using gluten-free color or not coloring is a choice, not a necessity, unless you have a topical allergy to an ingredient in the color.

    As far as your testing goes, I have had this conversation with another person on this forum with regards to this......the test used for confirming adherence to the diet is called a AGA IgA and AGA IgG. The tTg test is one that measures intestinal damage but it can also be a clue to other autoimmune diseases. Unless this test has been renamed, I am confused. If your tTg levels are going up, it could just be an indicator of your celiac disease and Sjogren's, or you could have more. I also have celiac disease and Sjogren's so we are alike in disease state. My tTg levels are in the normal range BUT they are always in the high normal range and I attribute it to the fact I have a total of 4 autoimmune diseases. Not trying to scare you or anything but with these 2 you have, it could explain your increasing levels or you could have more of them......not uncommon. A good doctor should run a complete celiac disease re-test panel on anyone having this many autoimmune problems or things could get confusing. Your joint pain could be coming from Sjogren's (it's classified as arthritis) and even following a strict gluten-free diet may still not keep it under total control and in remission.

    Were you a symptomatic Celiac before diagnosis? Would you know if you ingested small amounts of gluten? The only make-up I make certain is gluten-free are lipsticks or anything that goes on the lips, otherwise, I am fine.

    I would suggest reading Dr. Peter Green's book, entitled: Celiac Disease: The Hidden Epidemic. It goes into detail about what is the proper protocol for adhering successfully to the gluten-free diet. He is one of the leading researchers/doctors in this country so his credentials and advice are good.ad drawn


  3. Have you eliminated gluten from nonfood sources? Lotions, makeup, and such can be a source of CC. Do you have a significant other that eats or drinks gluten? If you do their stuff like lipsticks need to be gluten free and if they have eaten gluten and not brushed their teeth you can be glutened by a kiss. Do you have pets and if you do are they eating gluten free food? We can be CC'd by feeding them gluten and then petting them or being licked. Where do you work? If you are remodeling or working in construction there are items that can be sources of CC. Most noteable being stuff like drywall compound, wallpaper glues and such. Are you a crafter, again glues and paints and clays are often not safe. Also and this perhaps should have been mentioned first, are you on any prescription meds? Gluten ingredients are not required to be disclosed and it can hide in binders. This applies to both script and OTC drugs. Generic drugs can and do change binders at will and need to be checked at each refill. Also do you share your home with gluten eaters? IF you do you need seperate toasters and condiments and great care needs to be take to make sure you are not CC'd by any residue on counters etc.

    I hope you figure this out and see those numbers and related issues decrease soon.

    Thanks! I have not eliminated gluten from my lotions, make-up, etc... I will check with pharmacist re: one medication I am on. All my vitamins say gluten-free. My significant other is mostly gluten-free when at home. I never thought I could get significant amounts of gluten from these sources? How about hair color. Should I avoid it? I have emailed manufacturers and they assure me that although gluten may be present, they would not estimate that I could absorb it. They may be wrong. This is a puzzle that I would like to solve sooner than later. I am pretty much symptom free but am concerned about my increasing numbers. I do get periods of joint pain and fatigue and now wonder if this is just but a new manifestation?


  4. I have been diagnosed with Celiac for almost 3 years. Unfortunately my IGA levels continue to increase despite my ever increasing vigilance. I am symptom-free unless I ingest "hidden" gluten. My GI, however, says I am getting gluten from somewhere. I've checked vitamins, eat nothing pre-packaged, make my own salad dressings, etc... and rarely eat out. I'm stumped! I also have Sjogren's. Fatigue has been a problem lately. I just had a third gastric endoscopy and now have gastritis due to lots of bile in the stomach. Any thoughts, advice would be most welcome :)


  5. anyone from here that cannot find a group but would like to? Katebuggie28@yahoo.com We may need to start one.

    I too am interested in a Central Florida support group. I live in Seminole County and am struggling with my diagnosis. I Can't seem to get my tissue transglutaminase levels down, despite living gluten free. Any advice is welcome.