Ttg Iga Levels Increasing

[tclarkfl]

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

[ravenwoodglass]

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.

[tclarkfl]

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?

[happygirl]

Which IgA levels are increasing?

[tclarkfl]

Which IgA levels are increasing?

My Tissue Transglutaminase IGA are increasing from 27 to 42; however, my Tissue transglutaminase IGG is 2

[Gemini]

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?

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.

[tclarkfl]

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

[Gemini]

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.

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!

[tclarkfl]

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!

[cph]

My Tissue Transglutaminase IGA are increasing from 27 to 42; however, my Tissue transglutaminase IGG is 2

Hi! I seem to have the same issue you do. I was diagnosed about a year ago and have been faithfully following the diet. When I was retested for the first time recently, I was told that my TTg level went from a 24 to a 36. The MD said that I must be getting gluten from somewhere, but I can't figure out where! It seems impossible that the level would actually increase, since I was eating a ton of gluten before I was diagnosed. How could it possibly be higher when I've cut out all sources of gluten? (Even assuming I'm getting some gluten from some where, it can't be as much as it was pre-diagnosis!)

Have you had any luck in figuring this out? I'm rechecking everything I'm eating (including meds) and still haven't found any sources of gluten.

[Gemini]

Hi! I seem to have the same issue you do. I was diagnosed about a year ago and have been faithfully following the diet. When I was retested for the first time recently, I was told that my TTg level went from a 24 to a 36. The MD said that I must be getting gluten from somewhere, but I can't figure out where! It seems impossible that the level would actually increase, since I was eating a ton of gluten before I was diagnosed. How could it possibly be higher when I've cut out all sources of gluten? (Even assuming I'm getting some gluten from some where, it can't be as much as it was pre-diagnosis!)

Have you had any luck in figuring this out? I'm rechecking everything I'm eating (including meds) and still haven't found any sources of gluten.

tTg levels will also increase from other autoimmune problems like Sjogren's Syndrome, Hashi's thyroid disease, Type 1 diabetes, etc. This is why it is a poor choice on the physician's part to use any tTg repeat testing in regards to dietary compliance. The correct tests for dietary compliance are the Anti-Gliadin antibody tests for both IgA and IgG. These are the two that will just look for gluten that may be sneaking in.

If you are following a strict gluten-free diet and don't eat your shampoo on a regular basis, then you are probably not ingesting any gluten. It's the doctor who needs to repeat the correct tests. Plus, tTg levels may take quite awhile before they normalize and they may not completely get there if you have other autoimmune problems going on.....which is not uncommon with Celiacs.

Good luck talking to the doctor about this because most do not like being told they are running the wrong tests and they won't be looking for other problems unless your symptoms get really bad. This is why people with celiac disease and other autoimmune diseases get the shaft with medical care. The medical profession have a long way to go before they get it right!

[keshav]

Hi All, I have been on gluten free diet for last 2 yrs; but my ttg Antibody IgA count shows a continuous rise.. my TTG-IgA level has increased from 180 (2 years back) to around 300 now, when the lab normal is less than 20..though i gained around 5-6 kilograms (kgs) during in first 1.5 yrs, wt has decreased somewhat in last six months..(however ttg level never decreased)..

Though I have been on a strict home-made diet (rice, sorghum, veg and fruits) since Aug-08, increasing ttg level is a concern for me. I still go to motion around 3 times a day...

I have also got marginally high TSH level while normal T3 and T4 level and thyroid doctor says i am suffering or will suffer soon from hypothyroid...would that be contributing to rise in ttg level?? if yes, can i do something abt dis or medication of hypothyroid will result in fall in ttg level??

As of now, i m negative on ANA, ASMA, RA factor...

Could you please share any view/solution for the above symptoms??

[ravenwoodglass]

Hi All, I have been on gluten free diet for last 2 yrs; but my ttg Antibody IgA count shows a continuous rise.. my TTG-IgA level has increased from 180 (2 years back) to around 300 now, when the lab normal is less than 20..though i gained around 5-6 kilograms (kgs) during in first 1.5 yrs, wt has decreased somewhat in last six months..(however ttg level never decreased)..

Though I have been on a strict home-made diet (rice, sorghum, veg and fruits) since Aug-08, increasing ttg level is a concern for me. I still go to motion around 3 times a day...

I have also got marginally high TSH level while normal T3 and T4 level and thyroid doctor says i am suffering or will suffer soon from hypothyroid...would that be contributing to rise in ttg level?? if yes, can i do something abt dis or medication of hypothyroid will result in fall in ttg level??

As of now, i m negative on ANA, ASMA, RA factor...

Could you please share any view/solution for the above symptoms??

Are you taking any meds? If you are please check with the maker to be sure they are gluten free. Also although some think it doesn't matter do check your toiletries and personal care products as there are more who do react than don't. Do you have pets? If you do make sure those are eating gluten free also. I had a bird for a couple of years and did eventually need to find him another home to stop the mystery glutenings.

I do not know if the thyroid issue would contribute to the levels but there are many here dealing with both. Hopefully one of them will respond. Do consider making a new thread with your questions so more people see it.

[keshav]

Are you taking any meds? If you are please check with the maker to be sure they are gluten free. Also although some think it doesn't matter do check your toiletries and personal care products as there are more who do react than don't. Do you have pets? If you do make sure those are eating gluten free also. I had a bird for a couple of years and did eventually need to find him another home to stop the mystery glutenings.

I do not know if the thyroid issue would contribute to the levels but there are many here dealing with both. Hopefully one of them will respond. Do consider making a new thread with your questions so more people see it.

Thanks for your reply. I am taking oral supplements of Vitamind D3, Calcium and Folic Acid and injections of B12. Will check toileteries..in fact reading this thread only, i checked gluten in my shampoo and vaseline jelly i use. (thankfully none had:) I dont have any pet so thats not an issue. I am new here and found the above discussion related and very helpful so I asked my queries here. But will certainly make it a point to start new thread to get more replies.

[Gemini]

Hi All, I have been on gluten free diet for last 2 yrs; but my ttg Antibody IgA count shows a continuous rise.. my TTG-IgA level has increased from 180 (2 years back) to around 300 now, when the lab normal is less than 20..though i gained around 5-6 kilograms (kgs) during in first 1.5 yrs, wt has decreased somewhat in last six months..(however ttg level never decreased)..

Though I have been on a strict home-made diet (rice, sorghum, veg and fruits) since Aug-08, increasing ttg level is a concern for me. I still go to motion around 3 times a day...

I have also got marginally high TSH level while normal T3 and T4 level and thyroid doctor says i am suffering or will suffer soon from hypothyroid...would that be contributing to rise in ttg level?? if yes, can i do something abt dis or medication of hypothyroid will result in fall in ttg level??

As of now, i m negative on ANA, ASMA, RA factor...

Could you please share any view/solution for the above symptoms??

Absolutely! Thyroid disease, Hashi's to be exact, will raise tTg levels. If you know your TSH levels at last testing, please share because if this is elevated, then your thyroid could be out of whack and producing antibodies, which will raise your tTg. I have to say that your tTg is very high.....mine was very high also at diagnosis. I would think you would have to be ingesting large amounts of gluten to get it that high, if this were the sole cause of your tTg elevation. Are you symptomatic? If you are eating mainly at home and are strict about the diet and meds, then I really doubt gluten ingestion is the problem. Have your doctor run a full Celiac panel again, as discussed in some of the above posts. Going by tTg testing only, for dietary compliance, is incorrect. Have him run a thyroid antibody test also to see if those are elevated. If they are, then you may have the answer for your high tTg.

Replacement hormone therapy for thyroid hormone is easy and works well. I have been taking it for years and my thyroid is happy and in the normal range for function.

[keshav]

Absolutely! Thyroid disease, Hashi's to be exact, will raise tTg levels. If you know your TSH levels at last testing, please share because if this is elevated, then your thyroid could be out of whack and producing antibodies, which will raise your tTg. I have to say that your tTg is very high.....mine was very high also at diagnosis. I would think you would have to be ingesting large amounts of gluten to get it that high, if this were the sole cause of your tTg elevation. Are you symptomatic? If you are eating mainly at home and are strict about the diet and meds, then I really doubt gluten ingestion is the problem. Have your doctor run a full Celiac panel again, as discussed in some of the above posts. Going by tTg testing only, for dietary compliance, is incorrect. Have him run a thyroid antibody test also to see if those are elevated. If they are, then you may have the answer for your high tTg.

Replacement hormone therapy for thyroid hormone is easy and works well. I have been taking it for years and my thyroid is happy and in the normal range for function.

Thanks for your reply. My anti-thyroid antibodies are normal (with ANTI-THYROID PEROXIDASE ANTIBODIES of 39.2 when less than 60 is negative). However, TSH level is high at 5.10 when normal range is 0.27 - 4.10. T3 and T4 are normal. When anti-thyroid antibodies are normal, can high TSH level be the reason of high ttg-iga level ?

It would be nice if one could tell me the cause of stool frequency of 3-4 times and fatigue along with rising ttg levels despite 'VERY' strict gluten free diet for last 2 years (celiac detected at age of 27 in Sep-08). I have been only on home made food (gluten is not brought at all in my home) and medicines have been suggested by Gastroenterologists. Can it be Refractory Coeliac diseases wherein healing does not occure even after gluten free diet? Also, if some one can sharem what happens in Refractory Celiac Disease... After taking gluten free diet in Refractory Coeliac disease patients, does ttg level remain high OR "only villous atrophy remains present but ttg levels reduce"?

In addition to high TTG-IGA, high TSH; I also have high EOSINOPHILS at the level of 10% when normal range is 1-6%. I also have low Vitamin D3 (25-Hydroxy) at level of 10 on a normal scale of 27.7 to 107. Besides, I suffer from Asthma since the age of 4 years.

Please share your views on my above test results and symptoms...thanks!!

[Gemini]

Thanks for your reply. My anti-thyroid antibodies are normal (with ANTI-THYROID PEROXIDASE ANTIBODIES of 39.2 when less than 60 is negative). However, TSH level is high at 5.10 when normal range is 0.27 - 4.10. T3 and T4 are normal. When anti-thyroid antibodies are normal, can high TSH level be the reason of high ttg-iga level ?

It would be nice if one could tell me the cause of stool frequency of 3-4 times and fatigue along with rising ttg levels despite 'VERY' strict gluten free diet for last 2 years (celiac detected at age of 27 in Sep-08). I have been only on home made food (gluten is not brought at all in my home) and medicines have been suggested by Gastroenterologists. Can it be Refractory Coeliac diseases wherein healing does not occure even after gluten free diet? Also, if some one can sharem what happens in Refractory Celiac Disease... After taking gluten free diet in Refractory Coeliac disease patients, does ttg level remain high OR "only villous atrophy remains present but ttg levels reduce"?

In addition to high TTG-IGA, high TSH; I also have high EOSINOPHILS at the level of 10% when normal range is 1-6%. I also have low Vitamin D3 (25-Hydroxy) at level of 10 on a normal scale of 27.7 to 107. Besides, I suffer from Asthma since the age of 4 years.

Please share your views on my above test results and symptoms...thanks!!

As far as your thyroid is concerned, if all numbers are normal except for the TSH, I am not sure and would tend to doubt if your high tTg would have a link to the thyroid problem. Your tTg is extremely high yet your thyroid antibodies are in the normal range. That is a little puzzling to me. Either that, or your thyroid problem is in the early stages of dysfunction and will get progressively worse with time. If you had autoimmune thyroid disease (Hashi's)as a result of your Celiac problem, I would think that your numbers would be higher considering what your tTg is. However, I am not a doctor

and Celiac disease can do funny things to one's test numbers!

You ask some very good questions here! Were you extremely symptomatic pre-diagnosis and what about now? You have been eating gluten free yet your tTg is really high so I would think you would still be sick physically. I don't know that much about refractory sprue so don't know the answers to some of your questions but would be interested in knowing more myself. From what I understand, with refractory, you don't improve and are still sick. You may be eating gluten free but do not get better overall. Your tTg is showing autoimmune activity so is it possible that you have another underlying condition that is driving the number upwards? tTg corresponds to intestinal damage so those numbers may not come down if you have refractory sprue but I am not 100% sure. I am sorry that I can't be of more help but it sounds like you need to see someone who could address whether you do have refractory sprue or one of the other autoimmune diseases that would elevate tTg levels. You do need to supplement your thyroid NOW, though, so please make sure your doctor helps you with this. A TSH of 5 is high and you are not going to feel well until this is addressed.

[keshav]

Thanks a ton for addressing my questions. Around one month back, my thyroid doc had said that i have the option to start treating the thyroid or wait..as per her, 5 was marginally high...but will factor in your advice and try to address this sooner than later. Ya, i suffer from symptoms like 3 times motion a day, leg pain (especially calf muscle) and intermittent stomach pain. However I have gained weight that has been the positive in terms of pre-diagnosis.

Anyways, I am unable to solve the puzzle of high ttg and remaining symptoms and my current doc said it might be refractory celiac; but he is also not sure. I am going to check with another Gastro...will consult Thyroid doc again soon...Could any of you suggest any other specialist i should consult like related to immune system?

[Gemini]

Thanks a ton for addressing my questions. Around one month back, my thyroid doc had said that i have the option to start treating the thyroid or wait..as per her, 5 was marginally high...but will factor in your advice and try to address this sooner than later. Ya, i suffer from symptoms like 3 times motion a day, leg pain (especially calf muscle) and intermittent stomach pain. However I have gained weight that has been the positive in terms of pre-diagnosis.

Anyways, I am unable to solve the puzzle of high ttg and remaining symptoms and my current doc said it might be refractory celiac; but he is also not sure. I am going to check with another Gastro...will consult Thyroid doc again soon...Could any of you suggest any other specialist i should consult like related to immune system?

It might be a good idea to have an endocscopy done to actually see if your small intestine is healing or not. I usually don't push for those tests as they are invasive but in situations where a person is not responding well overall, I think it a good idea. You did gain some weight but that could mean you have had partial healing and enough to put some weight on but your progress has slowed or stopped. Also, by treating your thyroid now, it could reduce your tTG, if the thyroid problem is autoimmune. That would give you some answers.

FYI....my TSH at time of diagnosis for Hashi's was only a 7....and I could barely get out of bed and go to work in the morning.

Yours is a 5 so you definitely need thyroid hormone. It makes a world of difference. You know, I just thought that the weight gain you have had could actually be from the slower thyroid function. I gained about 5 pounds when my thyroid went low and I hadn't been diagnosed with celiac disease yet. That shows you how much thyroid affects your metabolism and body weight. I never had been able to get above 105 pounds in my life (due to celiac) yet gained another 5 pounds from the low thyroid. That melted off once I started thyroid hormone and, unfortunately, kept going down to 97 pounds when I hit the wall with the celiac disease. Not a good time, let me tell you! Get that thyroid addressed and see another GI for a second opinion. I think you may get some answers then. Just make sure they don't try and tell you it must be gluten ingestion. However, to do a check to see if you are correct on that, have them run the AGA/IgA and AGA/IgG blood work again. That is the test for the antibody to gluten and will tell you if you are ingesting anything. With a tTg that high, if you are ingesting any gluten at all, it would show on this test.

Good luck and I hope you find some answers. This can be so frustrating!

[keshav]

It might be a good idea to have an endocscopy done to actually see if your small intestine is healing or not. I usually don't push for those tests as they are invasive but in situations where a person is not responding well overall, I think it a good idea. You did gain some weight but that could mean you have had partial healing and enough to put some weight on but your progress has slowed or stopped. Also, by treating your thyroid now, it could reduce your tTG, if the thyroid problem is autoimmune. That would give you some answers.

FYI....my TSH at time of diagnosis for Hashi's was only a 7....and I could barely get out of bed and go to work in the morning.

Yours is a 5 so you definitely need thyroid hormone. It makes a world of difference. You know, I just thought that the weight gain you have had could actually be from the slower thyroid function. I gained about 5 pounds when my thyroid went low and I hadn't been diagnosed with celiac disease yet. That shows you how much thyroid affects your metabolism and body weight. I never had been able to get above 105 pounds in my life (due to celiac) yet gained another 5 pounds from the low thyroid. That melted off once I started thyroid hormone and, unfortunately, kept going down to 97 pounds when I hit the wall with the celiac disease. Not a good time, let me tell you! Get that thyroid addressed and see another GI for a second opinion. I think you may get some answers then. Just make sure they don't try and tell you it must be gluten ingestion. However, to do a check to see if you are correct on that, have them run the AGA/IgA and AGA/IgG blood work again. That is the test for the antibody to gluten and will tell you if you are ingesting anything. With a tTg that high, if you are ingesting any gluten at all, it would show on this test.

Good luck and I hope you find some answers. This can be so frustrating!

Consulted another Gastro.. He says ttg is high in many cases, which I am not sure about..As per him, TSH is marginally high so not an issue....also he could not explain why ttg is rising when i m at strict gluten free diet. He ran me through a councelling with dietician which also was fruitless as anyway i have restricted my diet to rice, pulses, spices, fruits and vegetables. Its really frustrating that Gastros keep recommending to Dieticians and then back to Gastros..and no solution...Hard luck I am putting my query once again on a new thread on this group so that some more people can read and reply...lets c if that helps!

[poopedout]

See my reply on your new thread. I think it helps to answer some of your questions.