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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Irishgirl76

Hashimoto's Testing While Gluten-Free?

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Hello,

I was diagnosed with Celiac just over a year ago. I have adopted a strict gluten-free (and grain-free) diet. I eat very clean, no processed foods, no soy, no dairy etc. yet I am still not feeling better. Very fatigued all the time. I am starting to suspect my thyroid. They checked my TSH when I was diagnosed and it was fine, but in my research I see that TSH is a poor test for Hashimoto's, and what they should be looking for is antibodies. My question is this: since Hashimoto's has a clear link to gluten sensitivity/Celiac, if I get tested for it now, will it come up negative since I have been gluten-free for a year? This week I took my cousin for Celiac testing, as she has many symptoms of Celiac. Come to find out she was diagnosed with Hashimoto's and Graves Disease as a child. So there is a family history. I have booked a doctor's appointment but would like to know what the odds are of a false negative.

Thanks so much!

Alissa

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I was strictly gluten free for about two years when I got my hashimotos diagnoses .Being gluten free will not cause a false negative when being tested for hashimotos .

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Are these the correct tests I should ask for?

TPOAb - Thyroid Peroxidase Antibodies

TgAb - Thyroglobulin Antibodies

Free-T3

Free-T4

Should I ask for Graves testing as well?

Thanks!!

Alissa

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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.

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Are these the correct tests I should ask for?

TPOAb - Thyroid Peroxidase Antibodies

TgAb - Thyroglobulin Antibodies

Free-T3

Free-T4

Should I ask for Graves testing as well?

Thanks!!

Alissa

yes those are the tests you will want to ask  your doc to run.

After being gluten free for almost 2 years my  testing results were;

TG AB was 36.94 normal range is <28.70

my TPO AB was 998.76 normal range being  < 10.10

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Thank you both very much. That will be very helpful. My TSH results were 1.6.

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Oh and I ALWAYS ask for test results, especially since my sister had her whole family tested for Celiac after I was dx'd and she was told her results were "fine". One year later her daughter had a SEVERE DH breakout, went back to the doc. He pulled up their bloodwork result and oops, 2 do the kids were actually positive.

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Thank you both very much. That will be very helpful. My TSH results were 1.6.

Your TSH is not a good indicator of whether or not you have hashmoitos ,, but unfortunately most doc do JUST  a TSH and go no further . Ask for  the TG AB and the TPO AB  ( stomp your feet a bit if you have too  to get the testing you need :D)

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Thank you. I have gotten very good at stomping my foot. :D I was the one who demanded Celiac testing and my daughter and I both came back positive. I have been right on a few other self-diagnoses as well (ie - my daughter's asperger's), so I think my doc has learned to listen to my instincts. Thank goodness!! :)

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I was strictly gluten free for about two years when I got my hashimotos diagnoses .Being gluten free will not cause a false negative when being tested for hashimotos .

Then why do so many suggest going gluten-free to control Hashimoto's?

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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.

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Then why do so many suggest going gluten-free to control Hashimoto's?

I've never heard that before.  Daughter has Hashimoto's.  Gluten used to be an issue for her but is not now.  She does not now and neger had celiac but an intolerance to it.

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Then why do so many suggest going gluten-free to control Hashimoto's?

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.

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

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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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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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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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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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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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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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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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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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 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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    Tammy Rhodes
    Celiac.com 04/24/2018 - Did you know in 2017 alone, the United States had OVER TENS OF THOUSANDS of people evacuate their homes due to natural disasters such as fires, floods, hurricanes, tornadoes and tsunamis? Most evacuation sites are not equipped to feed your family the safe gluten free foods that are required to stay healthy.  Are you prepared in case of an emergency? Do you have your Gluten Free Emergency Food Bag ready to grab and go?  
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    Connie Sarros
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    Jefferson Adams
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    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

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    • Yes you should get the full panel done. Maybe ask for a referral to a GI doctor since this has been going on for over 2 weeks. It might also be a good idea to get a stool sample tested for food borne illness if they haven't done it already.  I had salmonella for over 2 weeks once before the doctor tested. Doc kept insisting it was just IBS. Got an apology and some antibiotics.
    • Very true, I think I have taken steps to think that a upset stomach is normal , many times I would play soccer with discomfort or go on a date being extremely bloated but I thought it's normal for people with IBS! I have been eating a little bit of gluten for the past couple days. I feel a lot more tired than a few days ago and one day I slept 12 hours!  When I went gluten free for 8 days , I felt like my energy level went up, I felt better and even my sex drive sky rocketed. Not sure if that 8 days really made a difference or it's just psychological or both. I read a lot online about this condition and the more I read the scarier it gets. I guess my social life will never be the same. I can't travel freely anymore :-( It seems this a very serious condition, but what I don't understand is that most people with celiac are never diagnosed so how do they live their entire life not knowing with such severe consequences Right now I really look forward to going back to a gluten free diet, my endoscopy is on Friday.
    • I’ve been having diarrhea and headaches, daily for 18 days now. I have had many of the common celiac symptoms for most of my life, as well.  I asked the doc to check for celiac. He ordered the tTG-IgA and nothing else. It finally came back and my results for 3.48 (which according to the <20 range for my test, is obviously a very strong negative). I’ve read that ttg could give a false negative of you are IgA deficient.  I don’t want to annoy the doc and make him think I’m the queen of the internet, lol, but should I push for a full celiac panel and remind him that the ttg alone could give a false negative?  Did any of you get a negative tTG-IgA, but actually still have celiac? Also, I should mention on my blood work, my hemoglobin is fine and not showing anemia (not sure if that’s what causes the immunoglobulin A deficiency or not.. I don’t know enough about that deficiency.)
    • I don't think that's harsh at all. There are real concerns about cross contamination in the kitchens with these "gluten-free pizzas". Even Domino's has a warning.  While the Gluten Free Crust is certified to be free of gluten, the pizzas made with the Gluten Free Crust use the same ingredients and utensils as all of our other pizzas. Read the upper left big red box which says: Domino's DOES NOT recommend this pizza for customers with celiac disease. https://www.dominos.com/en/pages/content/customer-service/glutenfreecrust.jsp
    • Hello, I can tell you a couple of things, the first of which is based on personal experience. I sometimes have an unsightly rough patch on my nose that I have been struggling with for a number of years. If I bring up the topic at the dermatologist, they tend to put me on either an anti-fungal or a steroid cream, both of which after a while I stop using. The steroid of course does "work." My skin clears up. And now with the anti-fungal, this was more interesting. It seems that whatever it was on my nose did kind of clear up, but then a patch of...something (I don't know what) would crop up just outside of the area where I had put the anti-fungal cream. That made me laugh. Next, I assumed it might have been caused by not washing my hair enough (I have dandruff and used Head & Shoulders) so I'd experiment and it would (sort of) seem that my nose was not as bad on the day after I washed my hair. But the most dramatic improvement by far has occurred since I switched from Head & Shoulders to a bar shampoo (which I do in order to get organic ingredients but more important to cut down on plastic waste). Rough patch is simply gone with no trace of it. The older I get the more I am tending to use personal care products that try very hard to be organic. Second, I read the adverse effects of dapsone, and see that exfoliative dermatitis is one of them, as is photosensitivity. Have you ruled out adverse effects? Plumbago
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