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StephanieL

Last Time I Will Ask, Any Reasons For High Ttg

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Actually that's quite a bit more than "a tad" considering better doctors use 3 as the upper limit and good thyroid docs want it in the 1's.

That may be your cause for the high Ttg, especially if his TPO comes back elevated.

Thanks. I am researching this and think this is a good place to start delving again...

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***NEWEST LABS***

So his TSH is still at 4.1. His Free T3 is 0.9

So under the "new" TSH levels, they are still high. Thank you to you all, I pointed out these new values to the nurse who is going to talk to the GI Dr. about this and see what they say. I think we will go to the Endo regardless of what the GI says.

Would you agree with this?

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I don't know what's up with retesting tsh. Seriously. This is the second time I've seen it retested here, both times in young people.

I really have no idea. I did find this paper: http://jcem.endojournals.org/content/94/5/1678.full.pdf

Did they run a TPO?

No, no TPO was ordered that I see.

I am trying to decide if I need to peruse things with Endo or just call it a day till something else "breaks".

I am so worn out.

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No, no TPO was ordered that I see.

I am trying to decide if I need to peruse things with Endo or just call it a day till something else "breaks".

I am so worn out.

I know you are. You're doing a great job. Give it a break for a few days, see what else comes up,

Do you have an appt. to go over the results with the doc, to see what s/he is thinking?

I'd still get the thyroid antibody test. I have a feeling you need it.

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I don't know what's up with retesting tsh. Seriously. This is the second time I've seen it retested here, both times in young people.

I really have no idea. I did find this paper: http://jcem.endojournals.org/content/94/5/1678.full.pdf

Did they run a TPO?

I believe it is standard protocol to retest the TSH in children if 1 comes back high. 2 elevated TSH's taken on 2 separate days is enough to warrent treatment. I don't know why - I haven't researched that question myself. I just know my daughter's endo said so. ;)

How old is your son? (I think I missed that and now can't go back and look). If he's younger than 3 I would definitely push to treat the thyroid. Better to treat at that age than allow him to be hypo. The thyroid drives growth and cognitive development in those early years. Older than 3 and I would feel a little more comfortable with a wait and see approach but with that first value I'd really want to talk with someone other than a GI about it (endo or at least general ped if you have a good one).

By the way, I'm loving this thread. I have a kid with a perpetually high ttg also. It is just so aggravating!

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By the way, I'm loving this thread. I have a kid with a perpetually high ttg also. It is just so aggravating!

Misery loves company ;) lol

He's 5. The TSH levels were taken about 3 weeks apart (6.4 and 4.17 so they "fell" a bit). His Free T3 was WNL though so... Our whole Celiac journey started with Endo. and it looks like we need to head back there too.

What's your childs story with high tTG's? I am interested to hear! It's nice to know we aren't alone. Is it more common in the little ones?

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Misery loves company ;) lol

He's 5. The TSH levels were taken about 3 weeks apart (6.4 and 4.17 so they "fell" a bit). His Free T3 was WNL though so... Our whole Celiac journey started with Endo. and it looks like we need to head back there too.

What's your childs story with high tTG's? I am interested to hear! It's nice to know we aren't alone. Is it more common in the little ones?

Well, our story is that he is still on gluten at this point, so that could be it. But he has nothing besides the ttg indicating celiac. Doesn't react obviously to gluten, doesn't feel better either on or off a gluten-free diet, negative scope, all other labs are normal. Well, we just had the full panel done for the first time 2 weeks ago and gliadin IgG came back at 19 (normal is 20 and above) - haven't had the doctor weigh in on that yet so I'm not sure how significant it is, but all other celiac labs are normal. And the ttg has been fluctuating in the moderately elevated range to occassionally in the normal range (14-48 over the past year, with normal being up to 20). Never as high as your son's. His only symptoms are nutritional deficits - chronic anemia and enamel issues. Otherwise he's a growing, well developing, healthy kid. With nothing pointing us to gluten other than the ttg (which could indicate something else) we're not really sure where to go from here. We just took him to the University of Chicago Celiac Disease Center for a second opinion 2 weeks ago and they are re-evaluating his biopsy from last year. If that comes back still negative I'm not sure what the next step is. Maybe take him to the homeopath and get food intolerance testing done to see if its possibly a different food causing inflammation in the GI tract? With no symptoms to track its hard to know what to do.

My son is 7, by the way. He used to have issues with diarrhea/ blood in the stool as a baby but that went away by the time he was 1 and then he struggled to get his anemia resolved until he was about 2. But then he did well from age 2 to age 6 basically - only occassional mild anemia which was easily resolved with a multivitamin + iron. Then about a year ago it started getting harder to resolve the anemia and we found he had an elevated ttg and we've been watching it ever since and playing around with his diet trying to figure it out.

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Misery loves company ;) lol

He's 5. The TSH levels were taken about 3 weeks apart (6.4 and 4.17 so they "fell" a bit). His Free T3 was WNL though so... Our whole Celiac journey started with Endo. and it looks like we need to head back there too.

What's your childs story with high tTG's? I am interested to hear! It's nice to know we aren't alone. Is it more common in the little ones?

This explains your son's elevated tTg!!!!!! OK, I will admit I am not a doctor but I have Celiac, Hashi's thyroid, Reynauds and Sjogren's Syndrome and I

diagnosed all my problems, except for the Celiac, way before the docs caught them in blood work. I am pushy about things like this because by the time they took me seriously, I had a lot of damage and some of it will never get better. I hate for this to happen to others when it can be stopped.

Children are hard to diagnose because they haven't been on the planet long enough to sustain measureable damage to their intestinal tract. Damage can be really patchy so can be easily missed. In most autoimmune diseases, doctors wait until you are half dead before they treat because they are afraid of liability issues if they are wrong. An elevated test is an elevated test and should be investigated. You can also have an elevated TSH and normal T3 and T4....it's still thyroid disease. My TSH was 7 at diagnosis and I could barely get out of bed in the morning to go to work. You need to go back to the endo and demand a full thyroid panel, including the TPO to see if he is producing antibodies. I suspect he will be as his tTg is still elevated.

This is all connected back to Celiac so put on your pushy Mommy hat and don't take no for an answer. Honestly, there are many people on this board who could diagnose your child's problems better than any doctor. Don't let this slide because thyroid disease only gets worse if untreated. Good luck and keep us posted!

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Well, our story is that he is still on gluten at this point, so that could be it. But he has nothing besides the ttg indicating celiac. Doesn't react obviously to gluten, doesn't feel better either on or off a gluten-free diet, negative scope, all other labs are normal. Well, we just had the full panel done for the first time 2 weeks ago and gliadin IgG came back at 19 (normal is 20 and above) - haven't had the doctor weigh in on that yet so I'm not sure how significant it is, but all other celiac labs are normal. And the ttg has been fluctuating in the moderately elevated range to occassionally in the normal range (14-48 over the past year, with normal being up to 20). Never as high as your son's. His only symptoms are nutritional deficits - chronic anemia and enamel issues. Otherwise he's a growing, well developing, healthy kid. With nothing pointing us to gluten other than the ttg (which could indicate something else) we're not really sure where to go from here. We just took him to the University of Chicago Celiac Disease Center for a second opinion 2 weeks ago and they are re-evaluating his biopsy from last year. If that comes back still negative I'm not sure what the next step is. Maybe take him to the homeopath and get food intolerance testing done to see if its possibly a different food causing inflammation in the GI tract? With no symptoms to track its hard to know what to do.

My son is 7, by the way. He used to have issues with diarrhea/ blood in the stool as a baby but that went away by the time he was 1 and then he struggled to get his anemia resolved until he was about 2. But then he did well from age 2 to age 6 basically - only occassional mild anemia which was easily resolved with a multivitamin + iron. Then about a year ago it started getting harder to resolve the anemia and we found he had an elevated ttg and we've been watching it ever since and playing around with his diet trying to figure it out.

October...your son has Celiac Disease. His fluctuating tTg is because of his age but any child with anemia issues and dental enamel issues is most likely suffering from Celiac. I find it really hard to understand why doctors refuse to look at the whole picture.

I was chronically anemic for most of my life and have dental enamel defects galore to the point where I have had thousands of dollars worth of dental work done to fix everything. I think I most likely triggered as a child but was 46 before I figured it all out and went for testing. By that time, I had acquired 4 autoimmune problems and 3 of them most likely could have been avoided had I known I was a Celiac. Anemia is never normal in an adult, never mind a child. Your son's anemia will become harder to resolve because more of his GI tract will become damaged. I know it is difficult to believe when someone is asymptomatic with the major issues like GI distress because I think my husband has a problem also and he has no outward signs like your son except recurrent anemia and the fact he cannot gain weight. He notices no difference on the gluten-free diet but I have made him promise to give it a 6 month try because it can take that long to notice changes. If you cannot get a doctor to seriously look at this then I would do a strict dietary trial for at least 6 months. If it's Celiac, his anemia should resolve and his dental problems should stabilize. Don't let his supposedly normal healthy appearance fool you....he is still absorbing some nutrients and it can take a very long time before someone hits the wall with this. I know because it happened to me. He does have obvious symptoms to those of us who have this....anemia and teeth problems....especially with the enamel.

Good luck and I hope you find some answers but it sure sounds like Celiac to me.

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Thanks Gemini.

So our GI said if I wanted to go to the Endo she would refer us to one but she didn't see the need. I said we don't' need a referral but yes, I am going to the endo. So before I scheduled with the Endo at the hospital our GI is at, I call. I ask what this WORLD FAMOUS hospital uses as normal for TSH.

They did not give the correct answer (thank you SO much Gemini. I would not have researched the new TSH values if not for you. Thanks so much!)

I call the competing children's hospital and ask what they use as normal for TSH.

BINGO!!!! They are up on it ;) I set up DS's appt. for Feb 2. I am also searching this seconds Children's Hospital for a new GI too. DS's allergist is at the second hospital and if the endo ends up wanting to continue care with DS it would be much easier if they were all in one place.

I guess there are definite advantages to living in the rust belt ;) 2 world class children's hospitals to choose from!

October, Follow your Mom gut! Your story is so much like ours! High levels but - scope. No actual signs except a zero Vit. D level. He didn't change after going off gluten. After a few months of no changes we put DS on a probiotic and boom! Within 3 days things were normal in "output" department for the first time in his 4 years! Good luck and keep me posted on your "adventures"!

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Thanks Gemini.

So our GI said if I wanted to go to the Endo she would refer us to one but she didn't see the need. I said we don't' need a referral but yes, I am going to the endo. So before I scheduled with the Endo at the hospital our GI is at, I call. I ask what this WORLD FAMOUS hospital uses as normal for TSH.

They did not give the correct answer (thank you SO much Gemini. I would not have researched the new TSH values if not for you. Thanks so much!)

I call the competing children's hospital and ask what they use as normal for TSH.

BINGO!!!! They are up on it ;) I set up DS's appt. for Feb 2. I am also searching this seconds Children's Hospital for a new GI too. DS's allergist is at the second hospital and if the endo ends up wanting to continue care with DS it would be much easier if they were all in one place.

I guess there are definite advantages to living in the rust belt ;) 2 world class children's hospitals to choose from!

October, Follow your Mom gut! Your story is so much like ours! High levels but - scope. No actual signs except a zero Vit. D level. He didn't change after going off gluten. After a few months of no changes we put DS on a probiotic and boom! Within 3 days things were normal in "output" department for the first time in his 4 years! Good luck and keep me posted on your "adventures"!

Ha, Ha, Ha!!!!! I love it! You quizzed the doctors office and they failed! Most people wouldn't know to do that and just go with what the doctor tells them so they never get diagnosed and better.

When my TSH hits 4, my nails start splitting and I am so tired I could sleep for a week. I keep mine very low, almost suppressed and medicate according to my T3 and T4 levels...that is a viable option for treatment. If you get a good doctor, they will know that.

Once you get the thyroid under control with supplemental hormone, if needed, and you treat the probable Celiac, things get a lot better! KInd of stinks, though, that you have to fight so hard to find good doctors.

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Ha, Ha, Ha!!!!! I love it! You quizzed the doctors office and they failed! Most people wouldn't know to do that and just go with what the doctor tells them so they never get diagnosed and better.

;) I did quiz them and they absolutely failed! I have been ranting all day about this "world class, A-1 healthcare facility using outdated information for the tens of thousands of patients they see even year. They build buildings year round but can't spare a few grand to update the Docs.

(rant over ;) )

I didn't see any sense to going to that Dr. if they aren't using current standard test data and I am so glad the second children's hospital is up to snuff on it!

Gemini, This is one *small* thing you have done to help people out in the world. Keep fighting the fight! It also makes me question the thyroid results I got a few years ago from the same world class facility. I may have to go on-line and see if they still have those records available.

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October...your son has Celiac Disease. His fluctuating tTg is because of his age but any child with anemia issues and dental enamel issues is most likely suffering from Celiac. I find it really hard to understand why doctors refuse to look at the whole picture.

I was chronically anemic for most of my life and have dental enamel defects galore to the point where I have had thousands of dollars worth of dental work done to fix everything. I think I most likely triggered as a child but was 46 before I figured it all out and went for testing. By that time, I had acquired 4 autoimmune problems and 3 of them most likely could have been avoided had I known I was a Celiac. Anemia is never normal in an adult, never mind a child. Your son's anemia will become harder to resolve because more of his GI tract will become damaged. I know it is difficult to believe when someone is asymptomatic with the major issues like GI distress because I think my husband has a problem also and he has no outward signs like your son except recurrent anemia and the fact he cannot gain weight. He notices no difference on the gluten-free diet but I have made him promise to give it a 6 month try because it can take that long to notice changes. If you cannot get a doctor to seriously look at this then I would do a strict dietary trial for at least 6 months. If it's Celiac, his anemia should resolve and his dental problems should stabilize. Don't let his supposedly normal healthy appearance fool you....he is still absorbing some nutrients and it can take a very long time before someone hits the wall with this. I know because it happened to me. He does have obvious symptoms to those of us who have this....anemia and teeth problems....especially with the enamel.

Good luck and I hope you find some answers but it sure sounds like Celiac to me.

Gemini, thank you. I'm feeling good about the docs we're working with now at the Celiac Disease Center. Our previous GI had pretty much written it off - told us to keep giving him massive amounts of iron supplements and leave it alone unless/ until things get really bad. (I won't get into the talk about how if we miss a celiac diagnosis it really isn't so bad - that doc would be very unpopular on this board) So we made the journey to Chicago a few weeks ago and I'm hopeful that we will get answers there. The doc also said he thinks there is a 70% chance he'll convert my son's diagnosis to celiac. But he said it could also be a milk allergy causing inflammation and some microscopic bleeding. The enamel situation is strange - he has discoloration of the teeth but no cavities or other real dental issues that need addressed so I have yet to find a doctor who will say straight out they think the tooth color is a clue (the doc in Chicago gave it a "possibly related" which is the best I've gotten). Our other GI here in town said it could be just a genetic tendency toward iron deficiency anemia unrelated to gluten. Our ped said the ttg could be indicative of intestinal inflammation caused by something else entirely. Celiac is still at the top of my list of suspects (as it sounds like it is yours ;) ) but with some other ideas being tossed around and the lack of any obvious symptoms which would tell us we're on the right track its tricky. If I'm going to tell him he can't have any gluten again for ever I would really like to be sure that's true. Anyhow, we won't drop it. If we get nowhere in Chicago we'll try a longer gluten-free diet. I just want to be sure we've done all the testing we're going to do before we start that. I really would like a firm diagnosis. :rolleyes:

Anyhow, on the topic of TSH. I went back to look at my son's results after reading this. The lab we used (which is also a "Top Rated" Children's Hospital, has as its reference range 0.35-5.5. My son's TSH was 3.0. I'm going to have to ask my daughter's endo about this - I had read the changed recommendations awhile back but noticed not everyone was following that. I wonder why, and what range our endo uses. (She's at the other children't hospital).

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The enamel situation is strange - he has discoloration of the teeth but no cavities or other real dental issues that need addressed so I have yet to find a doctor who will say straight out they think the tooth color is a clue (the doc in Chicago gave it a "possibly related" which is the best I've gotten).

Tooth enamel can be damaged/discolored by fluoride (see pics of fluorosis here and here). As people get more fluoride from more sources, the occurrence is increasing dramatically.

Do you live in a region that fluoridates the tap water?

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;) I did quiz them and they absolutely failed! I have been ranting all day about this "world class, A-1 healthcare facility using outdated information for the tens of thousands of patients they see even year. They build buildings year round but can't spare a few grand to update the Docs.

(rant over ;) )

I didn't see any sense to going to that Dr. if they aren't using current standard test data and I am so glad the second children's hospital is up to snuff on it!

Gemini, This is one *small* thing you have done to help people out in the world. Keep fighting the fight! It also makes me question the thyroid results I got a few years ago from the same world class facility. I may have to go on-line and see if they still have those records available.

You do great rants!!!!! I also have found that these world class hospitals very often get mired in old standards when it comes to chronic illnesses. They have plenty of machinery with pretty blinking lights to impress people but they can't diagnose obvious thyroid disease to save their lives. I know that also as I live outside Boston and we have some of the best teaching hospitals in the country. My sister works in one of them...one that is world renowned and she had no clue that thyroid ranges had been changed. She also has screaming hypo symptoms herself but will she listen to her sister?

Nooooooooooo! :rolleyes:

Good luck with the visits and keep us updated!

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Gemini, thank you. I'm feeling good about the docs we're working with now at the Celiac Disease Center. Our previous GI had pretty much written it off - told us to keep giving him massive amounts of iron supplements and leave it alone unless/ until things get really bad. (I won't get into the talk about how if we miss a celiac diagnosis it really isn't so bad - that doc would be very unpopular on this board) So we made the journey to Chicago a few weeks ago and I'm hopeful that we will get answers there. The doc also said he thinks there is a 70% chance he'll convert my son's diagnosis to celiac. But he said it could also be a milk allergy causing inflammation and some microscopic bleeding. The enamel situation is strange - he has discoloration of the teeth but no cavities or other real dental issues that need addressed so I have yet to find a doctor who will say straight out they think the tooth color is a clue (the doc in Chicago gave it a "possibly related" which is the best I've gotten). Our other GI here in town said it could be just a genetic tendency toward iron deficiency anemia unrelated to gluten. Our ped said the ttg could be indicative of intestinal inflammation caused by something else entirely. Celiac is still at the top of my list of suspects (as it sounds like it is yours ;) ) but with some other ideas being tossed around and the lack of any obvious symptoms which would tell us we're on the right track its tricky. If I'm going to tell him he can't have any gluten again for ever I would really like to be sure that's true. Anyhow, we won't drop it. If we get nowhere in Chicago we'll try a longer gluten-free diet. I just want to be sure we've done all the testing we're going to do before we start that. I really would like a firm diagnosis. :rolleyes:

Anyhow, on the topic of TSH. I went back to look at my son's results after reading this. The lab we used (which is also a "Top Rated" Children's Hospital, has as its reference range 0.35-5.5. My son's TSH was 3.0. I'm going to have to ask my daughter's endo about this - I had read the changed recommendations awhile back but noticed not everyone was following that. I wonder why, and what range our endo uses. (She's at the other children't hospital).

Regarding the tooth enamel...when my adult teeth came in (I cannot remember what age that was so those with kids will have to fill me in!) my 2 lower, center teeth came in yellow. Really, really yellow. They were like that all my life until I had them capped as an adult....lovely! The dentist at the time, back in 60's, told my mother I must have gotten some virus to make them that way. They all thought it very strange but never had an explanation. I know it was from undiagnosed Celiac. It had to have happened at the stage where the teeth were developing. I was always sick as a kid with stomach issues that no one could ever explain. The light bulb didn't go on until I was 46 and got a diagnosis.

The yellow color, by the way, was because I had no enamel on those teeth at all. The enamel never formed. Discoloration can be from enamel issues. I bet if I saw your son's teeth I could tell if it's from Celiac. Sorry to be pushy but I don't want anyone to suffer the damage I did. Please keep us informed on what happens with testing, etc. Much luck to you!

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