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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 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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Help With Results...ttg & Thyroid

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Hello again

Received some tTG results today from doctors. They could not interpret them. So I was wondering if anyone here could. I have been gluten-free for 8 months and I have no idea what my previous tTG levels were as they only came back with a positive (UK protocol in some areas). So I have no idea if these levels are good or not.

 

(I have also put on some thyroid levels that were done for me at the same time, as I have been having some hair loss, palpitations, racing heart and a few other bits.)

 

ANY info GREATLY appreciated, especially with regards to my antibody levels... This is my first one... Here goes (I'd close my eyes if I didn't have to type!!)

 

Word for word:

 

Anti-tissue transglutaminase level  -   1.2u/mL (0-10) Tissue transglutaminase equivocal range =7-10u/mL

 

 

Someone give me some good news... Am crossing everything.

 

And  if anyone could explain to me exactly what this test is and what it tests for, I think its the antibodies produced to gluten, but is there any more to it ?? (Sorry to be so naive)

 

I know my thyroid is within lab range but wondered if perhaps I might tend towards being hypothyroid and whether these results lean towards it or not.

 

Thyroid function test

Serum free T4  17pmol/L (10-22)

Serum TSH 2.7 miu/L   (0.3-55)

 

Many HUGE thanks again to everyone

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Maybe I am missing something here but your tTg looks pretty good to me.  Am I reading it correctly that it is 1.2, with a normal range of 10 and under?  I am not sure what the equivocal range means.

 

tTg tests for intestinal damage only.  The DGP test looks for reaction to gluten in the bloodstream and is the better test to do for dietary compliance, yet many doctors never check both numbers. tTg can be elevated from other autoimmune diseases so having a slightly elevated number after diagnosis and start of the gluten-free diet may not be abnormal, if you have or suspect other AI problems.  Is there any way that they have a tTg number from before somewhere in your chart?  One other thing.....do not become alarmed if your tTG never hits zero.  It's not supposed to and rarely occurs in anyone.  You just want the tTg results to be in the low range of normal, but the lower the number is, the better you are doing.  I have gotten mine to a 1 but never a zero......it would be nice but not expected.

 

As for your thyroid, the numbers don't look too bad but in the States, many progressive doctors will state that a TSH of over 2.5 is treatable thyroid disease.  The problem is, TSH can be different for many and should not be used as a diagnostic test alone.  T3 and T4 levels have to taken into account, along with any symptoms you may be having.  It would have been really helpful if the doctor had done thyroid antibody numbers and yet....many never do.  <_<   What's odd is that you have heart palps and a feeling of a racing heart, which can be hyperthyroid symptoms.  Sometimes those with Hashi's thyroid disease, the autoimmune one, can swing between hyper and hypo.  I have Hashi's and that has happened to me....very unpleasant.

 

I hope this helps and if you have any more questions, ask away!

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Maybe I am missing something here but your tTg looks pretty good to me.  Am I reading it correctly that it is 1.2, with a normal range of 10 and under?  I am not sure what the equivocal range means.

 

tTg tests for intestinal damage only.  The DGP test looks for reaction to gluten in the bloodstream and is the better test to do for dietary compliance, yet many doctors never check both numbers. tTg can be elevated from other autoimmune diseases so having a slightly elevated number after diagnosis and start of the gluten-free diet may not be abnormal, if you have or suspect other AI problems.  Is there any way that they have a tTg number from before somewhere in your chart?  One other thing.....do not become alarmed if your tTG never hits zero.  It's not supposed to and rarely occurs in anyone.  You just want the tTg results to be in the low range of normal, but the lower the number is, the better you are doing.  I have gotten mine to a 1 but never a zero......it would be nice but not expected.

 

As for your thyroid, the numbers don't look too bad but in the States, many progressive doctors will state that a TSH of over 2.5 is treatable thyroid disease.  The problem is, TSH can be different for many and should not be used as a diagnostic test alone.  T3 and T4 levels have to taken into account, along with any symptoms you may be having.  It would have been really helpful if the doctor had done thyroid antibody numbers and yet....many never do.  <_<   What's odd is that you have heart palps and a feeling of a racing heart, which can be hyperthyroid symptoms.  Sometimes those with Hashi's thyroid disease, the autoimmune one, can swing between hyper and hypo.  I have Hashi's and that has happened to me....very unpleasant.

 

I hope this helps and if you have any more questions, ask away!

you shining star!! thank you!

so...tTG, maybe you are right then... i thought the same as you initially... and then starting looking at the results again, and wondered why they say Anti-tissue transglutaminase and then Tissue transglutaminase. Are these things the same thing then??

 

Ugh. I then looked up what the equivocal range meant and thought perhaps it meant I was 7-10u/mL. Which is high.

Now I am wondering if it has been put there for a range reference???

 

Equivocal means 'open to more than one interpretation', so I think it would indicate a level where they couldn't quite say 'positive', instead perhaps weak positive! I only ever had a tTG done once before by a different gastro, so there's no way it could be from before. 

 

My God. If it I am 1.2u/mL in a ref range of 0-10, I'll be learning how to cart wheel across my kitchen table!!!

 

As for thyroid, that's what I thought. My doctors point blank refuses to test my thyroid anymore, she wont entertain the idea of testing antibodies or anything UNLESS i'm out of their lovely huge ranges!! 

 

Hashimotos?? I didnt realise that that Hashimotos went between the two... Interesting... What other symptoms are there? 

 

Thanks Gemini for your answer, REALLY appreciated... Between you and Lisa (GottaSki), you've cheered me up, and brightened my doom! I am now hoping that you two are seeing the report as it ought to be seen and not through the eyes of an optimist turned pessimist! Celiac disease does strange things to your personality and confidence hey?

Hugs from blighty and thanks

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Well....I have to like someone who sends hugs from Blighty, don't I?  ;)   I have Irish blood in my veins so thank you for the hugs!

 

Actually, I am a Lisa also so you will always get the most up to date and accurate Celiac information from a Lisa.  :P

 

I still say that your Celiac tTg testing is normal and actually, pretty damn good.  Especially if you are asymptomatic and seeing improvement in that area.  tTg stands for tissue transglutaminase, as you probably already know.  Transglutaminase is a protein and the anti-tTg means autoantibodies against the tissue transglutaminase.  Say that 3 times fast!  :lol:

The testing is checking for the antibodies that result when you have a gluten problem.  That's the start of the destruction of your small intestine.

 

Hashimoto's is autoimmune thyroid disease. You can also have a thyroid problem that is not immune based.  Hashi's can swing between the two in times of stress or if your thyroid gets out of whack...which it can with Hashi's.  I went out of whack when I started to absorb nutrients again and all of a sudden, the dose I had been taking was too high.  I swung majorly high and then it took awhile to get the correct dose again.  I went too low trying to figure that all out and it all was a big pain in the butt.  But I am good now and am taking a lower dose of thyroid hormone.  Take a look at this website: http://www.stopthethyroidmadness.com/  It is chock full of useful information on thyroid disease...all the things your doctor does not want you to know.  People in the States have trouble finding good thyroid doctors because they do not treat thyroid well here....they try to do it cheaply and utilize only one test instead of doing a full thyroid panel.  You have to take the bull by the horns with regards to thyroid disease.  Educate yourself on it so if your troubles worsen, you'll be armed with information to throw at the doctor.

 

I would see what happens with the gluten-free diet because that can do a lot with regards to calming the thyroid down. I still need thyroid hormone but it is a lot more stable since going gluten-free.  You might find everything gets better the longer you stick with the diet.  Above all, it takes time to heal and feel better.  I read your signature and all the problems you list are common to Celiac Disease and can be improved upon or healed completely so do not be discouraged. Just be patient and try to keep a positive attitude. Yeah, I know, easier said than done!

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I would see what happens with the gluten-free diet because that can do a lot with regards to calming the thyroid down. I still need thyroid hormone but it is a lot more stable since going gluten-free.  You might find everything gets better the longer you stick with the diet.  Above all, it takes time to heal and feel better.  I read your signature and all the problems you list are common to Celiac Disease and can be improved upon or healed completely so do not be discouraged. Just be patient and try to keep a positive attitude. Yeah, I know, easier said than done!

 

I do believe Gemini said almost these exact same words to me about four years ago -- listen to her :)

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Well....I have to like someone who sends hugs from Blighty, don't I? ;) I have Irish blood in my veins so thank you for the hugs!

Actually, I am a Lisa also so you will always get the most up to date and accurate Celiac information from a Lisa. :P

I still say that your Celiac tTg testing is normal and actually, pretty damn good. Especially if you are asymptomatic and seeing improvement in that area. tTg stands for tissue transglutaminase, as you probably already know. Transglutaminase is a protein and the anti-tTg means autoantibodies against the tissue transglutaminase. Say that 3 times fast! :lol:

The testing is checking for the antibodies that result when you have a gluten problem. That's the start of the destruction of your small intestine.

Hashimoto's is autoimmune thyroid disease. You can also have a thyroid problem that is not immune based. Hashi's can swing between the two in times of stress or if your thyroid gets out of whack...which it can with Hashi's. I went out of whack when I started to absorb nutrients again and all of a sudden, the dose I had been taking was too high. I swung majorly high and then it took awhile to get the correct dose again. I went too low trying to figure that all out and it all was a big pain in the butt. But I am good now and am taking a lower dose of thyroid hormone. Take a look at this website: http://www.stopthethyroidmadness.com/ It is chock full of useful information on thyroid disease...all the things your doctor does not want you to know. People in the States have trouble finding good thyroid doctors because they do not treat thyroid well here....they try to do it cheaply and utilize only one test instead of doing a full thyroid panel. You have to take the bull by the horns with regards to thyroid disease. Educate yourself on it so if your troubles worsen, you'll be armed with information to throw at the doctor.

I would see what happens with the gluten-free diet because that can do a lot with regards to calming the thyroid down. I still need thyroid hormone but it is a lot more stable since going gluten-free. You might find everything gets better the longer you stick with the diet. Above all, it takes time to heal and feel better. I read your signature and all the problems you list are common to Celiac Disease and can be improved upon or healed completely so do not be discouraged. Just be patient and try to keep a positive attitude. Yeah, I know, easier said than done!

You know... THANK YOU! And more hugs :D

What you say sits well with me, I do think my thyroid is out as I have put a lot a weight on (from fruit and veg??!) and my hair SO thin now, I have bouts of mass shedding. Also a pee test with a private doc a while ago showed adrenal fatigue... Guess that impacts thyroid? And most hormones really. So I must be patient as you say! I'm gonna arm myself with the info, so thank you for the link, will give it a good going over!!

So the tTG thingy, if I am 1.2 (7-10) being equivocal range, then that's great isn't it? Or at least normal (these days normal is great to me!!)

Technically I assume if I no longer produce antibodies, my body just needs to heal now? It's hard bloody work this celiac business hey!! It amazes me that the docs are so blasé about it, they don't have a clue. They tried to give me beta blockers as I have been having afib and palps,... I asked if there was gluten in the medicine... He answered " don't worry, if there is, it's only a small amount" !!!!!! I gasped incredulously! Covered my mouth and escaped! As you say, we have to arm ourselves! You need huge fat verbal weapons here in blighty!!

Gemini thank yooooooou, and GottaSki, thank yoooouuu toooooo :D

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You know I'm sure celiac disease gives you bipolar??!!! I swing from elation to depression so quickly! Normally all health related, but still! I'd like my stable self back now please! ;)

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 I'd like my stable self back now please! ;)

 

My stable self is making more appearances lately -- my hubs and sons are VERY thankful ;)

 

Hang tight - eat right -- things will get better!

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My stable self is making more appearances lately -- my hubs and sons are VERY thankful ;)

 

Hang tight - eat right -- things will get better!

Lol :D

I wish my 

husband knew what this celiac disease is like, he gets cross if I remind to watch this or watch that...and gets cross if i'm feeling crap! does NOT get it. hey ho! my 6 year old son responds much better and is far more caring about it!!! guess you can't have it all?!!

 

My stable self is making more appearances lately -- my hubs and sons are VERY thankful ;)

 

Hang tight - eat right -- things will get better!

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Lol :D

I wish my 

husband knew what this celiac disease is like, he gets cross if I remind to watch this or watch that...and gets cross if i'm feeling crap! does NOT get it. hey ho! my 6 year old son responds much better and is far more caring about it!!! guess you can't have it all?!!

 

 

Unfortunately it took me getting pretty damn sick before my hubs really got it -- and part of him did think I was faking flares for years -- he went through a pretty tough time when I was finally diagnosed and we learned more about what had been happening to me over the years -- I don't blame him -- there were times even I thought it must be all in my head -- after all that was the only thing left that it could be, right?  NOT.

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A-fib and palpitations can be tied to both Celiac and thyroid problems.  Many people with A-fib have reported that their problems decreased or went away with the gluten-free diet.  This is all tied to inflammation.  If you look at associated conditions, both A-fib and bipolar are listed.  I would not recommend talking any meds for your heart, unless your problem is life threatening, until you have given your body a chance to heal. Don't let the docs symptom treat you.  You will be amazed at how many of your symptoms start to ease and disappear with time on the gluten-free diet. Then you'll be angry at the doctors again for not figuring this out.  And yes, adrenal fatigue and thyroid issues go hand in hand...they work in a loop together.  This is explained on the thyroid link I gave you.

 

I went to Ireland in 2011 and will go back.  I'll let you know whenever I do and we can meet up and have a little tipple in a pub.  ;)

 

Your tTg is great, from what I see, so keep up the good work!

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Unfortunately it took me getting pretty damn sick before my hubs really got it -- and part of him did think I was faking flares for years -- he went through a pretty tough time when I was finally diagnosed and we learned more about what had been happening to me over the years -- I don't blame him -- there were times even I thought it must be all in my head -- after all that was the only thing left that it could be, right?  NOT.

Yeah, I know, I mustn't be too hard on him I guess. It's just that I am expected to be 'normal' every day... Everything since going gluten-free, like my hives to eggs, my hair falling out, aches and pains, a-fib and palps, i get the standard "stop worrying about it, you're fine" or "stop reading up on the google, you see these things and them assign them to yourself". 

 

Like you say, it MUST all be in my head!! Its so upsetting though sometimes to have no support. Ho hum. Guess I'll just be strong enough for ME!

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A-fib and palpitations can be tied to both Celiac and thyroid problems.  Many people with A-fib have reported that their problems decreased or went away with the gluten-free diet.  This is all tied to inflammation.  If you look at associated conditions, both A-fib and bipolar are listed.  I would not recommend talking any meds for your heart, unless your problem is life threatening, until you have given your body a chance to heal. Don't let the docs symptom treat you.  You will be amazed at how many of your symptoms start to ease and disappear with time on the gluten-free diet. Then you'll be angry at the doctors again for not figuring this out.  And yes, adrenal fatigue and thyroid issues go hand in hand...they work in a loop together.  This is explained on the thyroid link I gave you.

 

I went to Ireland in 2011 and will go back.  I'll let you know whenever I do and we can meet up and have a little tipple in a pub.  ;)

 

Your tTg is great, from what I see, so keep up the good work!

THANK YOU :D

My doc gave me betablockers... 3 days ago... I have not taken them. I HATE the ida of masking things...and actually think you are right tbh, at least I hope you are!!

 

I have noticed (funnily enough), that my ONE treat... choc dipped rice cakes (dark choc), defo set me off with the palpatations... I havent had any of them in 2-3 days... I have only had minimal palpations, infact today I have yet to have one?

 

So it looks as though it could be the caffeine??? Never thought that such a small amount of choc in one day could do that?? I was probably totally 24g of dark choc! Hardly anything (at least by my standards!!!!) Looks as though I have lost my one treat, so bit upset, AND happy because hopefully its nothing more serious. (see I AM bipolar!!)

 

I'm just about to check your link out  now, haven't had the chance yet! Yes, about being angry at docs, they really have not been of any use to me whatsoever except to get the occasional blood test done (had to fight for them though), I have spend months being so angry and disappointed...now I have kind of had to 'let them go' for my own sake, and I have decided to charge of my own health as much as possible! You guys on this forum have been the 'mutts nuts'!!! As we say! I really cannot commend your support on here, it has been invaluable. 

 

I would just LOVE to meet up for a tipple, OMG how wonderful would that be? Seriously. You just let me know! And, of course, last but not least, thank you again. And more hugs :)

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Just a thought... If I look to be hypothyroid (think I am slightly) should I wait for a few months to see if things settle? I know that my results have fluctuated in the last 8 months quite alot. I'd obviously like to wait a while, unless I am putting myself at risk??

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If you feel really out of whack, you'll have to do something about that.  Although you mentioned that the docs weren't too willing to test your thyroid.  Keep on with the diet and keep track of your symptoms and if things aren't settling down where you feel comfortable, then you have to go to see them.  I hate that myself but don't ignore any serious symptoms.

 

Yes, chocolate could set off palps.  If I ate a piece of dark chocolate cake....even a small piece, it wires me out. It doesn't mean you can't have it forever, just give your heart a chance to settle down on the diet and try again in a little while.  Really.....you will be surprised at how many problems/symptoms are Celiac related, once they start to go away after a while on the diet.  I had many symptoms that disappeared over time.  Just remember, that might take a couple of years to happen. Healing does not happen overnight.  You have a lot of deficiencies and they need time to correct.

 

My cousin has A-fib really bad.  She was also told she has IBS and she has a thyroid problem.  I think she has Celiac also but they don't really listen to me.

She is not convinced she has Celiac so is just eating gluten light....dummy.  She ended up having surgery to correct the A-fib but if she doesn't wake up and go gluten-free, I doubt this will be a permanent fix.  I have tried telling her about the connection of Celiac to A-fib but it's like talking to a brick.  I have spoken with other Celiacs who told me their A-fib problems went away on the diet.  Your heart can start to produce tTg antibodies, which throw off heart function. Celiac affects every organ yet most doctors have no clue. 

 

I would look forward to having a drink with you!  I loved Ireland and the Irish.......such nice, friendly people. I do plan on returning so I will keep you in mind. By then, you should be healed and we'll have something to celebrate!   :)

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I would look forward to having a drink with you!  I loved Ireland and the Irish.......such nice, friendly people. I do plan on returning so I will keep you in mind. By then, you should be healed and we'll have something to celebrate!   :)

 

Hey...miss a couple days and miss important intel!

 

Drinks in Ireland with Gem and DS....can I tag along????

 

On a serious note...I did read the thread and strongly second Gemini....you know your body better than any doctor.  Keep a symptom log....anything serious...go to the doctor...they chased me away far too many times...never again.  I know better and so do you.  Hang tough!

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Anyone that wants to come along is welcome!  Ireland is gluten-free friendly and it's a beautiful country.  I'll never forget the first morning there...all jet-lagged and I heard these words at breakfast....."Would you like some Celiac bread with your eggs"?  That's what they call it.  Really....you have bread for me?  I knew then I would love Ireland.  The bread was good too!   :)

 

We really need to do a group Celiac trip......go invade some small country and whoop it up!

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count me in, maybe I can dig up a relative or 2 while there, lol.

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Anyone that wants to come along is welcome!  Ireland is gluten-free friendly and it's a beautiful country.  I'll never forget the first morning there...all jet-lagged and I heard these words at breakfast....."Would you like some Celiac bread with your eggs"?  That's what they call it.  Really....you have bread for me?  I knew then I would love Ireland.  The bread was good too!   :)

 

We really need to do a group Celiac trip......go invade some small country and whoop it up!

 

Whoop!  Whoop!  Whoop!

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Ha,ha,ha,ha!!!!!!!  I like the attitude!   :D  :lol:

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