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Ttg Won't Decrease

ttg refractory celiac vitamin d

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24 replies to this topic

#16 beachbirdie

 
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Posted 03 March 2013 - 10:13 PM

As Gemini said, make sure your daughter gets tested thoroughly for thyroid.  This should include the anti-Thyroid Peroxidase (anti-TPO antibodies) and the anti-Thyroglobulin antibodies (TgAb), in addition to the TSH, FREE T3 and FREE T4.  Total T4 and Total T3 are useless without the "Frees".

 

Autoimmune liver disease and inflammatory bowel diseases (Crohn's for example) are conditions that can also raise the TtG IgG.


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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

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#17 Hermom

 
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Posted 09 March 2013 - 11:57 AM

Thanks to you all for the level-headed advice.  Especially Gemini and beachbirdie.  I will be sure to follow the comments on the thyroid screening when the time comes.

 

In the meantime...I am trying to find a balance between panic and legitimate concern while we wait for the next round of bloodwork.

 

Blessings to you all!

 

Hermom


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#18 majab

 
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Posted 18 March 2013 - 07:07 AM

Hello everyone,

 

my first post here just to say I sympathise and share same concern with Hermom and your daughter. I am 32 yrs old and was diagnosed celiac seven months ago. Had no real digestion problems exept anemia which wouldn't go away. At that time, first results on tTG-IgA were >200 (normal is below 20). Now seven months after the results on tTG - IgA are still >200.

 

The DGP-IgG is 24 (normal is below 25) - so DGP is ok. They didn't do DGP for first time seven months ago. As Gemini mentioned the test doesn't give exact numbers above 200 so I can't really tell if antibodies have dropped. Even a small drop would tell that there is some reaction to gluten-free diet. So I am very concearned. I'm getting  different info on how much time does it take for TTG to lower down when on gluten-free diet. My doctor said that this takes a while and that I shouldn't be concered, that 7 months is not enough time, other say it takes 6-8 months. And now I have to wait another six months for new bloodwork on tTg-Iga.

 

I am from Croatia and celiac people have much more difficulties being gluten-free.  I am vegetarian, I cook my own meals, almost never eat out, of course there is this problems getting traces of gluten in my food with which I really try to be careful. But I am very worried if I have this refractory celiac disease.

 

Can somebody answer me what DGP results acctually tell? I read somwhere that elevated numbers show that gluten is still entering organism..? And tTg-Iga damage, inflamattion of gut? I really don't know about these antibodies.

 

 

I guess we have to be patient and hope that the next bloodwork will show improvements.

 

Maja


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#19 Gemini

 
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Posted 18 March 2013 - 10:36 AM

Hello everyone,

 

my first post here just to say I sympathise and share same concern with Hermom and your daughter. I am 32 yrs old and was diagnosed celiac seven months ago. Had no real digestion problems exept anemia which wouldn't go away. At that time, first results on tTG-IgA were >200 (normal is below 20). Now seven months after the results on tTG - IgA are still >200.

 

The DGP-IgG is 24 (normal is below 25) - so DGP is ok. They didn't do DGP for first time seven months ago. As Gemini mentioned the test doesn't give exact numbers above 200 so I can't really tell if antibodies have dropped. Even a small drop would tell that there is some reaction to gluten-free diet. So I am very concearned. I'm getting  different info on how much time does it take for TTG to lower down when on gluten-free diet. My doctor said that this takes a while and that I shouldn't be concered, that 7 months is not enough time, other say it takes 6-8 months. And now I have to wait another six months for new bloodwork on tTg-Iga.

 

I am from Croatia and celiac people have much more difficulties being gluten-free.  I am vegetarian, I cook my own meals, almost never eat out, of course there is this problems getting traces of gluten in my food with which I really try to be careful. But I am very worried if I have this refractory celiac disease.

 

Can somebody answer me what DGP results acctually tell? I read somwhere that elevated numbers show that gluten is still entering organism..? And tTg-Iga damage, inflamattion of gut? I really don't know about these antibodies.

 

 

I guess we have to be patient and hope that the next bloodwork will show improvements.

 

Maja

 

 

Hi maja,

      We have another member on this forum who owns a second home in Croatia.  She is an exceptional cook so maybe she will chime in with some advice BUT a few things......

 

The DGP tests for reaction to gluten in the blood stream and you want that number to be as low as possible, within the normal range.  Yours is 24 and that is excellent but over time and strict adherance to the gluten-free diet, it should come down even further.  But it will take time.  You should not worry about Refractory Sprue at all because that usually strikes people who do not know they have Celiac and continue to eat gluten or those who have been diagnosed and do not follow the diet well.  It does not happen all that much either and you are young so don't waste your energy worrying about that.  Seven months is just the beginning for being gluten free and you're still learning.

 

The tTg-IgA tests for damage to the intestinal tract and that can take quite awhile to normalize.  You are right....they use these annoying ranges and when they don't give you a specific number to begin with, you have no idea how much ttg has dropped. But your DGP is in the high end of normal so it doens't look like you are ingesting gluten to the point where you wouldn't heal.  The other reason tTg can be elevated is from other autoimmune disease....thyroid disease, liver disease, Chron's disease and diabetes.  The test looks for tissue damage.

I am not saying you have another disease popping but it might be good to do a full thyroid panel to see if that is off.  I have no idea how easy that is to do in Croatia but it might be a good thing to discuss with the doctor...and hope they listen to your concerns.Thyroid disease is extremely common with Celiac....I have 3 other autoimmune diseases besides celiac but am doing fine. 

 

Personally, as it can take up to 2 years to get that pesky tTg in the normal range, I think you need to give it more time. A thyroid panel would be good to do but you haven't been gluten-free long enough to get too worried just yet.  Make sure they always do the DGP with the tTg because the tests means 2 different things and you need the one with the other to get a clearer picture.  Hopefully, I haven't confused you too much and if you have any questions, please feel free to ask.


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#20 majab

 
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Posted 18 March 2013 - 11:44 PM

Dear Gemini thank you soooo much for your reassuring and comforting words. I needed just that. You made a lot of things more clearer to me now. :)

Yes I guess I have to be more patient.  I will certainly ask doctor about this thyroid tests. For now I will wait six months till the next test and then see what will be the next step.

So glad to hear you are doing just fine, despite having to cope with 4 AI diseases.

 

Maja


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#21 dilettantesteph

 
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Posted 19 March 2013 - 05:04 AM

You might want to be aware of this study of refractory celiac patients.

http://www.celiac.co...symptoms-study/


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#22 Gemini

 
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Posted 20 March 2013 - 11:54 AM

Dear Gemini thank you soooo much for your reassuring and comforting words. I needed just that. You made a lot of things more clearer to me now. :)

Yes I guess I have to be more patient.  I will certainly ask doctor about this thyroid tests. For now I will wait six months till the next test and then see what will be the next step.

So glad to hear you are doing just fine, despite having to cope with 4 AI diseases.

 

Maja

 

I'm glad I could help.  Yes, the most important thing to do is develop good patience.  It took me 3 years to completely get rid of all my symptoms of Celiac so expect a longer recovery with this disease.  I had really high numbers like you on testing so improvement does not happen overnight.  Good luck with everything!


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#23 Hermom

 
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Posted 15 May 2013 - 09:29 AM

Listen to Stephanie.  Your doctor should also be doing a repeat DGP or the older AGA-IgA/IgG to see if she is reacting to gluten in her blood......repeating the tTg only is the incorrect way to monitor the diet.  Doctors make this mistake ALL THE TIME and I have posted this information so many times on this forum, it makes my head spin.  Yet, still I see poeple with clueless doctors who don't know how to re-test for compliance.

 

The tTg only checks for intestinal damage, which can be elevated from other AI diseases.  Forget Refractory Sprue......she is too young to sustain that kind of damage to cause it.

The other tests I mentioned look for gluten reaction in the blood so if this is negative, then your daughter is not consuming gluten and most likely may have another AI disease brewing.

 

That may not be so bad because when people are young, other AI diseases may not have been brewing long enough to cause much damage and many times, symptoms can be reversed.  If your daughter has been serious about the diet, then it is also unlikely she is being glutened by non-food items.  Lets face it, how many people actually eat their make-up and shampoo to the point where they cannot lower their tTg?  The only things she really needs to be vigilant about are hand and body lotion and lipstick/ anything that goes on the lips.

I think this point is seriously over blown.  Do people really want to be eating shampoo on a regular basis?    :huh:   How can you not know you are eating shampoo?  The taste alone would get you!

 

Have your daughter's thyroid checked, with a full thyroid panel, not just the TSH and a screening for diabetes.  Also, sometimes your liver enzymes can be elevated from Celiac Disease and liver disease can elevate tTg.  This does not mean that your daughter has liver disease as liver enzymes usually always return to normal after following the gluten-free diet for awhile.  I had elevated liver enzymes but not anymore.  I also have 3 other AI diseases in addition to Celiac so I know a lot about this.  All of my numbers have returned to stellar ranges

after awhile on the gluten-free diet.  I am very sensitive to trace amounts of gluten and nearly died 8 years ago from the disease so if I can do this at my age, your daughter will be fine. it sometimes takes awhile to figure it all out and get on the right track.

 

Make sure the doc does the repeat DGP!  That will give you some insight as to whether she is truly gluten-free.  Not need to go crazy looking for holes in the diet when that might not be the reason for the elevated numbers.  Good luck to you and hang in there......your daughter will be fine!   :D

**UPDATE**

 

Well we have some results on daughter's latest tests.

 

In general things have shown some improvement, though some questions remain.

 

Here is the results:

4/26/2013 DEXA SCAN
IMPRESSION:
 
Bone mineral density is within normal limits for chronologic age.
 
CLINICAL INDICATION:
 
16-year-old white female with celiac disease.
 
LABS:
 
Tissue Transglutaminase IgA f 61.4 H unit(s) [0.0-19.9]
Prothrombin Time 14.1 second(s) [11.5-15.0]
INR f 1.1 L [2.0-3.0]
Gliadin IgA f 15.4 unit(s) [0.0-19.9]
Gliadin IgG f 5.0 unit(s) [0.0-19.9]
Calcium 9.3 mg/dL [8.9-10.7]
Phosphorus Level 3.7 mg/dL [3.0-4.8]
Vitamin D 25 Hydroxy Total f 79.2 f ng/mL [30.0-100.0]
Vitamin A, S
Free Retinol(Vit A) 38.0 mcg/dL 14.4-97.7
 
Vitamin E Level 7.9 f mg/L [3.8 - 18.4]
 
So...Her bone density has improved. We have confidence that she is complying with the gluten-free diet. And her Vitamin D is back in normal range.
 
The remaining issue is that though the Tissue Transglutaminase IgA f 61.4 H unit(s) [0.0-19.9]
has decreased from 70 in January, it is still quite high.

 

Her ped. GI wants me to take her to her GP for a thorough physical, to see if they can find the reason for her general fatique, joint aches, headahes etc.

 

If GP doesn't come up with anything,  ped. GI wants to look at an endoscopy and possible steroids to address the idea of Refractory Sprue!! I'm not willing to go there yet.

 

This is what I want to do and woud love any sage advice on this.

 

I have asked daughter to start journalling her aches and pains.  Will take her in two weeks or so to her GP and discuss what the journal shows and ask the GP to do a full Thyroid panel.

 

If that shows us nothing....not sure what I will do next.  She has no gastro symptoms...so I don't understand why the ped. GI keeps mentioning the refractory idea.

 

One other result of note is that her dad had a retest of his celiac panel and all results negative / normal

 

Would love to hear from you all to see if this seems like a reasonable approach...or any ideas of other things we should investigate.

 

Blessings!


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#24 shadowicewolf

 
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Posted 15 May 2013 - 10:00 AM

I've heard that arthritis might cause the ttg to go up, but i'm not sure if that is factual or not.


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#25 Gemini

 
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Posted 15 May 2013 - 10:10 AM

The reason I do not go to any GI doctors is because of reasons like this.  Oy, Vay!  :blink:

 

If your daughter's bone density and vitamin numbers are getting better, then she doesn't have refractory.  Putting her on steroids she doesn't need will only make her bone density worse, if she takes them longer than 3 months.  What are these people thinking???????

 

A couple of things.....her gliadin IgA number is 15.4, with a normal range being 0-20.  It is in normal range but you want that number to be as close to zero as possible.  That means your diet is very tight.  I am not saying she is eating gluten and it does take quite awhile to fine tune that number down closer to zero but keep that in mind.  Do not think it has to be zero, either. My lowest was a 1 but it took me about 5 years to get it that low and yes, I go out to eat occasionally.  It doesn't have to be zero and I have never met anyone who has gotten it to zero but this is the measurement of reaction to gluten in the blood stream and you want that number a little lower.  Having said that.....

 

Her symptoms could very well be thyroid or rheumatoid arthritis or it could be that she had so much inflammation, body wide, it will take longer to completely heal. It took me awhile to bring my tTg down because I had thyroid disease and a couple of others, to boot.  This is how it works.  Do not let them label her as Refractory.  If she were, then her bone density and vitamin levels would not be improving.  Did they not check her thyroid? I had joint pain myself, in my hands, before I healed and got everything in good working order.  I have absolutely no joint pain of any kind anymore and I'm almost 54 years old.  Your daughter either has another AI problem OR she is in need of more healing time.

 

Go see her PCP and have them screen her for all the other problems associated with Celiac.  Her tTg is slowly coming down but this isn't a race, ya know!  ^_^  Doctors really have no clue about the recovery phase of Celiac......

 

Best of luck and keep us updated.  Bring a listing of all associated conditions and make them look into those first!  :)


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