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Hashimoto's Testing While Gluten-Free?


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#16 Irishgirl76

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Posted 14 March 2013 - 03:12 AM

This video is long but it explains how gluten affects autoimmunity (including thyroid).


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Me - Feb 2012 - Celiac (Positive blood test and biopsy)
dd7- Jan 2012 - Celiac (Positive blood and biopsy), Asperger's Syndrome.
ds5 and ds3, Jan 2012 - negative Celiac panel but suspect DH, Both are HLA DQ2 pos.

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#17 Irishgirl76

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Posted 14 March 2013 - 03:17 AM

I just had to do my thyroid panels today because they are thinking I have Hypothyroidism, along with the Prolactinoma (pituitary tumor) and low cortisol, and I have been gluten free for almost a year now.


Interesting... Would you mind posting your results here when you get them?
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Me - Feb 2012 - Celiac (Positive blood test and biopsy)
dd7- Jan 2012 - Celiac (Positive blood and biopsy), Asperger's Syndrome.
ds5 and ds3, Jan 2012 - negative Celiac panel but suspect DH, Both are HLA DQ2 pos.

#18 Gemini

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Posted 14 March 2013 - 07:00 AM

Those tests will give you a good idea if it's graves too, but by the sounds of it, you seem to have more hypo symptoms rather than hyper.

 

You'll want your Free T4 and FreeT3 to be in the upper 50-75% range of your lab's normal reference range (ideally). Those antibody tests should basically be at zero.  You might as well get your TSH checked too; that should be close to a one. Make sure you get your results and don't accept "you're normal" as an answer. If your numbers are at the edges of the normal range, that can be a problem for people... it is for me.  LOL

 

Good luck.

 While you are always dispense top notch advice on this forum, especially with regards to thyroid disease, I have to add a comment on thyroid antibody testing.  There is a range that is normal for antibodies and like Celiac antibody testing, you will be hard pressed to test for a zero, unless you have no thyroid problems at all.  The lab I use is normal for anything under 40.  You do want the number to be as low as possible but for anyone with Hashi's and huge antibody numbers at diagnosis, getting that number below what is considered normal is great and should be considered a success.  Mine were 1200 the year before I was diagnosed with celiac.  I had already been diagnosed with Hashi's 15 years prior.  Fast forward 8 years gluten-free, and my latest testing showed a 32...the lowest it's ever been.  At those levels, there is still some random activity but it's considered so low that it isn't a threat to your thyroid.

 

Things I have learned.....the gluten-free diet most definitely helped stop the attack on my thyroid.  I still have to take hormone replacement as I went so long undiagnosed for Celiac BUT my thyroid is much happier and stable now.  Being gluten-free will not affect thyroid testing at all, at least not for diagnostic purposes.  Turning things around can take many years so don't give up if you have been gluten-free for 3 years and there isn't much change.....it still may come.

 

The reasons for developing more AI diseases when you need to be gluten-free and aren't is mainly because your AI system does not just stop at destroying your small intestine.  If you go long enough, it turns on other body tissue and the thyroid and pancreas, plus the joints, are the ones that are largely attacked following the small intestine.  I have no idea why these are the favorites and neither does the medical profession but maybe that will be uncovered one day.  It's all about inflammation.


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#19 Irishgirl76

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Posted 14 March 2013 - 05:42 PM

Thank you Gemini. I have read lots of anecdotal stories about people going gluten-free and their thyroid antibodies plummeting. I just want to be sure that if the tests come back negative that it means I do not have Hashimoto's. Not that I have just stopped producing antibodies because going gluten-free has calmed my immune system. Some people are saying this can happen in as little as 3-6 months of being gluten free.

The more I read, the more I realize I have many symptoms of both hypo and hyper (or Graves??) - including Mitral Valve Prolapse, which I was diagnosed with last year. I've read some studies that say as many as 40-50% of those with autoimmune thyroid disease have this! I have written down all of my symptoms and rush factors, along with what tests I should ask for, to show my GP. Any advice or suggestions would be welcome.

Thanks,
Alissa
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Me - Feb 2012 - Celiac (Positive blood test and biopsy)
dd7- Jan 2012 - Celiac (Positive blood and biopsy), Asperger's Syndrome.
ds5 and ds3, Jan 2012 - negative Celiac panel but suspect DH, Both are HLA DQ2 pos.

#20 Newbee

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Posted 14 March 2013 - 06:38 PM

About a year after I got diagnosed with celiac disease I was diagnosed with hashimoto's.  They tested my thyroid at the same time they gave me the celiac test and my thyroid was fine.  A year later all my thyroid tests were severly bad.  I think this is no coincidence.  In fact I've read there are proteins in your thyroid that are very similar to gluten.  It makes me wonder if when you remove gluten from your body, those antibodies you have go attack your thyroid.  I have no idea if it works like this, but just makes me wonder . . .


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#21 pricklypear1971

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Posted 14 March 2013 - 08:40 PM

I've had several tpo tests after going gluten-free. They are all over the place. Once almost normal, once out of the ballpark, once somewhere in between.

Levels vary. If you come up negative perhaps ask to be retested later to be sure. I've never tested "normal", but it may not be impossible. Someday :)?
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#22 brothergrimm

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Posted 15 March 2013 - 09:21 AM

I have seen it suggested but fail to  find any evidence to support the suggestion.that going gluten free will control hashimotos.

 

I have been STRICTLY gluten free for 3 1/2 years and my hashimotos still progresses.

 

The suggestion may come about  because so many celiacs ( an autoimmune disease )  also have hashimotos ( an autoimmune disease ) just as many of us also develop  diabetes (an autoimmune disease ) and other autoimmune diseases .

 

 

 ** on a side note ** I have found being grain free does help me manage my blood sugar levels.

 

I've been dismayed at the lack of harded evidence for it, too. And it's becoming an automatic recommendation from just about everyone to try gluten-free...and for AT LEAST a year. Seems like it stems from the folks over at stopthethyroidmadness.com who report people finding lots of success with it?


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#23 Gemini

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Posted 15 March 2013 - 10:17 AM

I've been dismayed at the lack of harded evidence for it, too. And it's becoming an automatic recommendation from just about everyone to try gluten-free...and for AT LEAST a year. Seems like it stems from the folks over at stopthethyroidmadness.com who report people finding lots of success with it?

 

Hashi's is so common with celiac anyway, and when you go gluten free and all that inflammation starts to subside, thyroid antibodies may go down....way, way down.  There isn't always hard evidence of stuff from the AMA because they tend to study diseases that get a lot of press or will kill your faster than Celiac will.  I find it best to talk to others and try what they try because following a gluten-free diet for a year to see if that might be the problem certainly does not hurt anyone and you might end up finding that you have a problem with gluten.  If you do the diet correctly, that is, by eating healthy.

 

The stopthethyroidmadness people know what works best and they know how to diagnose and treat hypothyroidism.....much better than the AMA.  The AMA does not recognize sub clinical thyroid disease or they won't treat elevated antibodies until they get really bad.  They test your TSH and that's their way of doing things.  NOT!


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#24 Gemini

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Posted 15 March 2013 - 10:22 AM

About a year after I got diagnosed with celiac disease I was diagnosed with hashimoto's.  They tested my thyroid at the same time they gave me the celiac test and my thyroid was fine.  A year later all my thyroid tests were severly bad.  I think this is no coincidence.  In fact I've read there are proteins in your thyroid that are very similar to gluten.  It makes me wonder if when you remove gluten from your body, those antibodies you have go attack your thyroid.  I have no idea if it works like this, but just makes me wonder . . .

 This is common for Hashi's...it can be all over the map until you get it under control but you still can pop "bad" from time to time.  It is much harder work for me to control my thyroid than the Celiac.  More maintenance involved.My antibodies are continually stable or coming down but my T3/T4 can become wonky sometimes. Doesn't happen often but once in a while it'll dip low and I feel it. 


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#25 nvsmom

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Posted 16 March 2013 - 08:01 AM

 While you are always dispense top notch advice on this forum, especially with regards to thyroid disease, I have to add a comment on thyroid antibody testing.  There is a range that is normal for antibodies and like Celiac antibody testing, you will be hard pressed to test for a zero, unless you have no thyroid problems at all.  The lab I use is normal for anything under 40.  You do want the number to be as low as possible but for anyone with Hashi's and huge antibody numbers at diagnosis, getting that number below what is considered normal is great and should be considered a success.  Mine were 1200 the year before I was diagnosed with celiac.  I had already been diagnosed with Hashi's 15 years prior.  Fast forward 8 years gluten-free, and my latest testing showed a 32...the lowest it's ever been.  At those levels, there is still some random activity but it's considered so low that it isn't a threat to your thyroid.

 Thanks.  :)  You are right. I should say that your TPO Ab should be very low and closer to a zero than the upper end of the range. It really is the bigger picture when it comes to thyroid testing isn't it... I guess it's the same with celiac.

 

My TPO Ab was only tested once and it was considered "normal" at 33.8 with a range of 0-34. I just assumed it was "normal" because my thyroid was pretty burned out after untreated hypo symptoms for 15 years. My TSH was my only abnormal test at the time (14something?) and my T's were considered normal too although they had almost bottomed out. 7 months later I'm on 112mcg of synthroid, and I'm still hypo with low T's and a TSH that is "within range" at about a 5. I don't think my thyroid works much since I'm getting close to full replacement amounts of T4 (synthroid) for my size.

 

I too hope that as i get my celiac undercontrol, I'll have less inflammation and maybe my TPO ab will come down further and the attack on my thyroid will stop before my thyroid is completely killed off.


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ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

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#26 Gemini

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Posted 20 March 2013 - 12:03 PM

 Thanks.  :)  You are right. I should say that your TPO Ab should be very low and closer to a zero than the upper end of the range. It really is the bigger picture when it comes to thyroid testing isn't it... I guess it's the same with celiac.

 

My TPO Ab was only tested once and it was considered "normal" at 33.8 with a range of 0-34. I just assumed it was "normal" because my thyroid was pretty burned out after untreated hypo symptoms for 15 years. My TSH was my only abnormal test at the time (14something?) and my T's were considered normal too although they had almost bottomed out. 7 months later I'm on 112mcg of synthroid, and I'm still hypo with low T's and a TSH that is "within range" at about a 5. I don't think my thyroid works much since I'm getting close to full replacement amounts of T4 (synthroid) for my size.

 

I too hope that as i get my celiac undercontrol, I'll have less inflammation and maybe my TPO ab will come down further and the attack on my thyroid will stop before my thyroid is completely killed off.

You are never going to get your thyroid in good range taking Synthroid.  I am sure you have already heard that but just taking T4 is not helpful with Hashi's.  A TSH of 5 has me struggling to get out of bed in the morning.  I suppress my TSH to almost nothing and just go buy my T3/T4.  No wonder you still feel off!  So many doctors do not treat elevated antibodies and it's criminal.  Is there any way of getting a script for Nature-throid or something similar with T3 thrown in?

 

Going gluten free definitely helps but it does take a long while....at least for me it did.  It's been 8 years gluten-free and my TPO is still slowly going down into a lower normal range.  Either that, or my thyoid is caput and I don't know it!  ;)


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#27 nvsmom

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Posted 20 March 2013 - 07:13 PM

You are never going to get your thyroid in good range taking Synthroid.  I am sure you have already heard that but just taking T4 is not helpful with Hashi's.  A TSH of 5 has me struggling to get out of bed in the morning.  I suppress my TSH to almost nothing and just go buy my T3/T4.  No wonder you still feel off!  So many doctors do not treat elevated antibodies and it's criminal.  Is there any way of getting a script for Nature-throid or something similar with T3 thrown in?

 

Going gluten free definitely helps but it does take a long while....at least for me it did.  It's been 8 years gluten-free and my TPO is still slowly going down into a lower normal range.  Either that, or my thyoid is caput and I don't know it!  ;)

 

Thanks for the advice.  :)  I have an appointment in May with a doctor I know is willing to give Armour... or at least T3. When I asked my doctor about natural desicated thyroid he said that his "scientific mind could not allow him to prescribe that".  LOL He really said that to me.  I wanted to slap the man - I used to teach physics and I think I can handle a bit of science.  LOL :rolleyes:

 

I am still slowly upping my synthroid (until May anyways). My doctor doesn't agree with me but he knows I'm doing it. I''ll get labs in another week and I'll probably be upping it to 125mcg. I do have relief of some symptoms (hairloss has slowed, etc) but not enough to be satisfied yet.


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"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

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#28 pricklypear1971

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Posted 20 March 2013 - 07:27 PM

Thanks for the advice. :) I have an appointment in May with a doctor I know is willing to give Armour... or at least T3. When I asked my doctor about natural desicated thyroid he said that his "scientific mind could not allow him to prescribe that". LOL He really said that to me. I wanted to slap the man - I used to teach physics and I think I can handle a bit of science. LOL :rolleyes:

I am still slowly upping my synthroid (until May anyways). My doctor doesn't agree with me but he knows I'm doing it. I''ll get labs in another week and I'll probably be upping it to 125mcg. I do have relief of some symptoms (hairloss has slowed, etc) but not enough to be satisfied yet.


I haven't attempted to backtrack...but is your reverse t3 high?

I cut my meds in half without negative effect...my rt3 was high. I could have tripled my NatureThroid and had no change.

My doc says it proved at the moment my symptoms were not thyroid but adrenals (what I feel). I never feel up/down like some people talk about re:Hashis. She again says its because my adrenal symptoms are dominating.

I asked about rt3 blocking and she said it may be a factor, time would tell. I have improved by reducing thyroid meds and increasing adrenal support. Jury is out.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#29 ButterflyChaser

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Posted 21 March 2013 - 02:38 AM

I've had several tpo tests after going gluten-free. They are all over the place. Once almost normal, once out of the ballpark, once somewhere in between.

Levels vary. If you come up negative perhaps ask to be retested later to be sure. I've never tested "normal", but it may not be impossible. Someday :)?

 

This also depends on the time of day you get tested. From what my endo told me (she also has them antibodies, and never developed the disease, ie. she has always been symptomless for the past 25 years she has been positive), once they are high they tend to remain in the body, but their quantity will not be stable, so that, with the exception of dramatic drops/increases, changes in the range are only relatively indicative.

 

I will have new results coming in soon, and will see if there's a difference after a few months gluten-free.


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Hashimoto's thyroiditis and Grave's disease (2011). It must have been a Black Friday.
Intestinal dysbiosis. Suspected damage to my vili (2012). NCGS according to my dermatologist upon seeing my post-wheat rash.

Gluten-free. Sept 2012.
Canola, almonds, soy = evil.

Grain-free, legume-free. December 2012.
No peanuts and tree nuts. February 2013.
Erb-Duchenne palsy from birth trauma.

My body is trying to kill me.


#30 pricklypear1971

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Posted 21 March 2013 - 06:54 AM

This also depends on the time of day you get tested. From what my endo told me (she also has them antibodies, and never developed the disease, ie. she has always been symptomless for the past 25 years she has been positive), once they are high they tend to remain in the body, but their quantity will not be stable, so that, with the exception of dramatic drops/increases, changes in the range are only relatively indicative.

I will have new results coming in soon, and will see if there's a difference after a few months gluten-free.


I always test fasting, first thing in the am, with a zillion other tests demanded by docs...and am well bled by various vampires.

Variance is variance. The number always varies.

I tested once during an AI flare (I'd been glutened, exhausted, allergies, headaches, had recently had the flu...). Sky high. Inflammation markers were also high.

Tested when I felt "ok", elevated about 20 pts above normal...

My first tpo when I was dx'ed with Hashis was 200+? Tsh was 5.6, my t3/t4 was slightly off....but lots of symptoms.

As I said, I've never tested "normal". On or off gluten.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!


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