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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? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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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cristiana

Thyroid Problems - Nodule

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Hello Fellow Celiacs

 

An MRI scan has just revealed that I have a thyroid nodule.   I am yet to have the ultrasound etc to confirm what type it is.  I was so surprised at yet another new diagnosis of something else that I didn't ask for details, but I imagine it measures about 1cm from what I saw on the scan.  For some reason or another he couldn't actually feel it when he examined my neck.  I certainly can't!

 

I was just wondering if anyone else out there has had one of these.  My consultant seems quite low key about it, he says a lot of ladies of my age have them.  I'm in my mid-forties and if I have another thyroid problem blood tests have not revealed it, although I do feel colder since giving up gluten.  I realise there is some risk of it not being benign, but I was just interested to know if anyone has had one - or has one.  

 

Thanks!

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Hi Cristiana,

 

I have had a large one and some smaller satellites on my Thyroid for about two years now.  I also have hypothyroidism.  It has not really effected my thyroid levels that  I know of because I was also being treated for cancer and that does effect thyroid levels which it did.  They will probably do an ultra-sound every 6 months for awhile and look for size changes unless, of course, it is malignant.

 

Good luck and let us know how it come out.

 

Colleen

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Hi Cristiana,

 

I have a couple nodules and a cyst on my thyroid.  If you spend some time reading about thyroid nodules you will find that they are quite common in fact.  Most people have them or will have them as they age.  Over 90% of the time they are benign.  Just a hardening of the tissue or something.  They can do an FNA (fine needle aspiration) to take a biopsy sample for testing. You probably won't even feel that.  Nodules are not something to worry about usually.

 

People's thyroids slowdown as they age and produce less thyroid hormone.  So everyone becomes hypothyroid as they age.

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Thanks so much for getting back to me so quickly.   I must admit it wasn't news I expected.   I gather to have one is of more concern than several, but I guess it is possible that I might have more than one, as I don't think the MRI scan shows them in the best detail.   

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Hi Christiana,

 

Yes, an ultrasound is what my thyroid doctor said is better.  Cheaper and less intrusive than an MRI or cat scan, and works just fine.  Plus that warm gel on your throat feels kinda nice.  Can be a bit messy though, so don't wear really nice clothes to the ultrasound.  They have you lie down on a table and glurp some gel on your neck and run the US around, back and forth a while.  Doesn't hurt at all, but might take a bit to get good images.  Probably 15 minutes or so.

 

I've had nodules for years.  One at first but then another after a few years.  Thyroid nodules like company it seems.

 

About com Mary Shomon on thyroid issues

 

http://thyroid.about.com/cs/nodulesgoiters/a/nodules.htm

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Thank you for that extremely helpful link...   and for that advice about the ultrasound, it doesn't sound at all bad really.  It is interesting that you started off with one, then another came along.  Do you know, do they ever just 'disappear'?

 

I don't know of anyone in our family who has a thyroid problem so I really appreciate your and Colleen's comments.  It is interesting to read that thyroid problems and celiac go hand in hand.  No one in my family is a celiac, and all my celiac friends have never looked back since embarking on their gluten-free diet, whereas I just keep struggling from one new health issue to the next!  

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I have had Hashi's for 16 years. Was diagnosed when the nodules were found during a routine exam. They have never changed. Hope that gives you more piece of mind.

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I have had Hashi's for 16 years. Was diagnosed when the nodules were found during a routine exam. They have never changed. Hope that gives you more piece of mind.

That is very reassuring.  Thank you.   My thyroid has seemed off for some months now,  my hair is thinner and I really feel the cold like never before.  How do they treat Hashi's if you have nodules?

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Thank you for that extremely helpful link...   and for that advice about the ultrasound, it doesn't sound at all bad really.  It is interesting that you started off with one, then another came along.  Do you know, do they ever just 'disappear'?

 

I don't know of anyone in our family who has a thyroid problem so I really appreciate your and Colleen's comments.  It is interesting to read that thyroid problems and celiac go hand in hand.  No one in my family is a celiac, and all my celiac friends have never looked back since embarking on their gluten-free diet, whereas I just keep struggling from one new health issue to the next!  

 

I don't think they disappear Cristiana.  They tend to have babies instead!  They really aren't something to worry about usually.  Many people have them and never even know it.  On the odd chance that there is a bad one, they would probably remove the thyroid, and start you on thyroid replacement hormones.  But that is only a 10% chance or less.  Thyroid nodules are a normal part of life, and most people have them at some point.

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Thank you GFinDC, I am beginning to wonder if I would be doing better on replacement hormones anyway - mine don't seem that effective anymore!   Interesting what you say about many people having them and never knowing it -  I was thinking today at church there's probably about ten people here with the same condition but they don't know it!    Thanks again all for your support.

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That is very reassuring.  Thank you.   My thyroid has seemed off for some months now,  my hair is thinner and I really feel the cold like never before.  How do they treat Hashi's if you have nodules?

I started with a small dose of thyroid replacement in an attempt to bring down my thyroid antibodies (which were the highest my docs had ever seen) even though my TSH was in the normal range. Over the years my dosage increased. Two years ago I experienced a thyroid storm going from hyper to hypo on almost a daily or weekly basis. My Mom has Graves and I can tell you it is better to be hypo than hyper. My mom has permanent eye damage, ugh! On top of this storm, came menopause issues and then celiac disease. Everything has stabilized now since going gluten-free.

If you have thinning hair and are feeling cold, you should have a complete thyroid panel done. You might need thyroid replacement.

Take care.

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I just received my sono results for my thyroids. Came back with six nodules . Two look like cyst and one is over 2 inches on diameter. I will be going to get eight biopsies to check for cancer. Then once i get the results back I will get a full removal. I have constant sinus infections and truly feel it is because of my thyroid. I am scared, and tired of being diagnosed with another problem. Celiac is truly causing so many problems for me when it comes to other autoimmune diseases. I hope that once I get my thyroid removed, the anxiety problems and sinus problem subside.it's comforting to know that I am not the only one going through this, or been through this. Luck and blessings to all

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I just received my sono results for my thyroids. Came back with six nodules . Two look like cyst and one is over 2 inches on diameter. I will be going to get eight biopsies to check for cancer. Then once i get the results back I will get a full removal. I have constant sinus infections and truly feel it is because of my thyroid. I am scared, and tired of being diagnosed with another problem. Celiac is truly causing so many problems for me when it comes to other autoimmune diseases. I hope that once I get my thyroid removed, the anxiety problems and sinus problem subside.it's comforting to know that I am not the only one going through this, or been through this. Luck and blessings to all

Hi Stella.  I am sorry, like quite a few of us on the forum, sometimes it does feel as if the celiac test is just the tip of the iceberg!  

 

My thyroid ultrasound came back showing I had several tiny nodules, but one over 1cm, so they told me I could keep it if they found that it was normal but guess what... they didn't get enough cells to be 100% sure!   So I have another biopsy in a few months.  

 

I am currently seeing five different specialists for different things so I do sympathize.  Everything was fine until I got ill then diagnosed with celiac, and it has been downhill ever since! This is a great website as it shows that there are other celiacs going through similar things, heartening to know when most of the celiacs I have met in my home town etc seem to have gone from strength to strength since they went gluten free.  Not me :(

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Hi Thyroid Nodule Friends

Opening up this old thread that I started in 2014 - feels like yesterday.

I've just been told by my GP that she can feel a nodule - thinks it is the same one I spoke of previously  - but I have to get another u/s to check all is well.  Since I started this topic I've had two u/s, with two aspirations and nothing found.  Then I dropped off the radar - I  was never asked back.  Just wanting to know, for those of you have nodules, how often do you get them checked? Or do you? I feel I've been negligent  not to have been on top of this but the hospital never suggested follow ups so I assumed I didn't need one.

My current issue is a slightly swollen neck, but I have had a cold virus, so might have nothing to do with it. And neck and shoulder pain - but I'm hoping it's just coincidental.

Thanks!

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My nodules that has been with me since they were discovered in '97, are gone.  Yep, gone along with the enlargement.  I never had them aspirated because all my doctors thought they were due to Hashi's and not cancer.  I assume that my Gluten free diet calmed down my thyroid and my celiac disease.  Who knows?  I have not found any scientific research on the subject.

Blame the cold for the swollen neck and pain.   

Edited by cyclinglady

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42 minutes ago, cyclinglady said:

My nodules that has been with me since they were discovered in '97, are gone.  Yep, gone along with the enlargement.  I never had them aspirated because all my doctors thought they were due to Hashi's and not cancer.  I assume that my Gluten free diet calmed down my thyroid and my celiac disease.  Who knows?  I have not found any scientific research on the subject.

Blame the cold for the swollen neck and pain.   

Wow! Gone! That's amazing!  Thank you so much. Hoping for similar here, then - maybe it is just my cold!

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4 hours ago, cyclinglady said:

My nodules that has been with me since they were discovered in '97, are gone.  Yep, gone along with the enlargement.  I never had them aspirated because all my doctors thought they were due to Hashi's and not cancer.  I assume that my Gluten free diet calmed down my thyroid and my celiac disease.  Who knows?  I have not found any scientific research on the subject.

Blame the cold for the swollen neck and pain.   

Hi Cycling Lady

Just one more question - sorry. When you said that you had enlargement, did your neck feel rock hard or just a bit puffy. My health anxiety is taking over now.  That side of the neck does feel puffy and squidgy, if that makes sense.  I just don't know what multi-nodular goitres are meant to feel like.

xx

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Hi cristiana,

I had my nodule checked a couple months ago.  First time in 4 years to have it checked.  Mine is still benign, like before.  But it has grown to double the size.  Since my nodule is in a cyst, they drain the fluid around it first.  That helped a lot with swallowing, and the cyst still hasn't swollen back up significantly.   So getting the cyst drained was worthwhile as it relieved pressure in my throat.  That might be something to consider.

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7 minutes ago, GFinDC said:

Hi cristiana,

I had my nodule checked a couple months ago.  First time in 4 years to have it checked.  Mine is still benign, like before.  But it has grown to double the size.  Since my nodule is in a cyst, they drain the fluid around it first.  That helped a lot with swallowing, and the cyst still hasn't swollen back up significantly.   So getting the cyst drained was worthwhile as it relieved pressure in my throat.  That might be something to consider.

Hi gluten-free

Thanks so much for your post - your previous post way back in '14 helped reassure me greatly, and it was good to re-read it earlier. I also feel better that you didn't have another round of testing for four years and all is benign.  Was your throat at all swollen?

I guess I'm panicking a bit because a friend of mine told me before Christmas she could see a lump in my throat.  But I went home, asked my husband, and he couldn't see or feel anything, nor could I.

However,  recently I've had a lot of neck/ear/shoulder pain and something feels as if something is catching in my neck when I move sometimes.  The front of my neck, to the right where I imagine my thyroid might be seems, puffy.  Of course being an Olympic Gold Medalist (in hypochondria) I've put all these symptoms together and I've got myself in such a state. I keep looking at my children and thinking why on earth wasn't I more proactive.

Reading your commonsense, reassuring posts helps a lot.   I've got the u/s on Wednesday and then if the nodule looks dodgy I can have an aspiration but I have to wait another week for that procedure. Oh well... I guess I need to lose some weight. This sort of waiting game always puts me off my food!

 

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8 hours ago, cristiana said:

Hi Thyroid Nodule Friends

Opening up this old thread that I started in 2014 - feels like yesterday.

I've just been told by my GP that she can feel a nodule - thinks it is the same one I spoke of previously  - but I have to get another u/s to check all is well.  Since I started this topic I've had two u/s, with two aspirations and nothing found.  Then I dropped off the radar - I  was never asked back.  Just wanting to know, for those of you have nodules, how often do you get them checked? Or do you? I feel I've been negligent  not to have been on top of this but the hospital never suggested follow ups so I assumed I didn't need one.

My current issue is a slightly swollen neck, but I have had a cold virus, so might have nothing to do with it. And neck and shoulder pain - but I'm hoping it's just coincidental.

Thanks!

I have this as well. Got it after my first gluten challenge (winter of 2016), a swelling in the right neck. It started with a strange zap like sensation and slowly turned into a more chronic pain. After months, I finally begged my old primary for an ultrasound which showed up looking like Hashi's with a tiny 3 mm nodule. Only one antibody test was run and it was negative.

 

I was diagnosed with Hashi's by an endo who never ran any bloodwork for the condition outside of what the primary care doc did, which was normal.

 

My current local GI ordered the U/S again and the nodule has not changed much but the right side of my isthmus is 4.8 mm and the left is 2.7 mm. I also have a 2.9 cm cervical lymphnode.

 

I was also told nodules are normal and the lymphnode is "reactive".

 

It has been over a  year now and I am STILL waiting for a new endocrinologist and/or someone to run the missing thyroid antibody test that was never run and to tell me what the hell my lymphnode is reacting too. I have an appointment in August. I may look out of county to find something soonersince my health has been declining for over a year now.

 

I would certainly suggest you follow up with another ultrasound. And do not let yourself get lost in the system. My god I have to fight just to get consistency between docs. They never seem to communicate with each other.

 

But do know that yes, nodules are common.

 

And keep me posted!

 

 

 

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1 hour ago, ironictruth said:

btw...you don't grind your teeth when you sleep do you?

Hi ironic - thank you so much for sharing, what it is not to feel alone! But that said I'm sorry you are in this fix as well.  It is so interesting that you have had pain. I do feel sorry that you've had to wait around like this, wondering what on earth is going on.

I always imagine something else is going on with my thyroid other than multi-nodular goiter,  although so far my TSH readings have been normal.  But as my friend icelandgirl and I have often remarked, it seems there is always something going on... Something to be wondering about. That in itself can be pretty exhausting.

I was told by a dentist a while back I ground my teeth - but my husband has never said anything about it, I imagine that's something that someone else would hear?  Is it a thyroid symptom or just stress?:unsure:

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Hi friend,

I too have a thyroid nodule.  Mine was found almost 3 years ago.  I switched Dr's and my new one, upon finding that I was on thyroid medication and had never had an ultrasound sound, ordered one.  Mine was 5 mm at the time.  The general policy here it seems that if its over 1 cm, they do a biopsy.  If it's smaller than that, they watch it.  That involves a yearly repeat ultrasound for 2 years and then every 5 years if there is no change.

As of last August, mine had shrunk!  Seriously.  I was super excited.  I chalk it up to being gluten free and having the Hashis calm down.

My mom on the other hand has 1 over a cm, 1.1ish.  So it was biopsied and came back benign.  After a year though, it had grown a little.  So now its being watched more closely, don't want it to become too large.

Have you ever had your thyroid antibodies done?  If not, you should.  You likely do have Hashis...maybe are even in need of a little thyroid medication.  Are your Dr's only checking TSH?  If so, that number just doesn't tell enough.  I remember my mom's TSH was always perfect, but when they tested her antibodies they were around 1500, which is quite high.

Try not to worry too much, dear friend.  I'm sure that all will turn out great.  Please let me know if you need anything.

Hugs!

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My neck felt normal.  I think all your current issues are related to inflammation of the lymph nodes, etc. from your cold.  Wait a few weeks.  If it is not resolved, then consult your doctor.  

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9 minutes ago, icelandgirl said:

Hi friend,

I too have a thyroid nodule.  Mine was found almost 3 years ago.  I switched Dr's and my new one, upon finding that I was on thyroid medication and had never had an ultrasound sound, ordered one.  Mine was 5 mm at the time.  The general policy here it seems that if its over 1 cm, they do a biopsy.  If it's smaller than that, they watch it.  That involves a yearly repeat ultrasound for 2 years and then every 5 years if there is no change.

As of last August, mine had shrunk!  Seriously.  I was super excited.  I chalk it up to being gluten free and having the Hashis calm down.

My mom on the other hand has 1 over a cm, 1.1ish.  So it was biopsied and came back benign.  After a year though, it had grown a little.  So now its being watched more closely, don't want it to become too large.

Have you ever had your thyroid antibodies done?  If not, you should.  You likely do have Hashis...maybe are even in need of a little thyroid medication.  Are your Dr's only checking TSH?  If so, that number just doesn't tell enough.  I remember my mom's TSH was always perfect, but when they tested her antibodies they were around 1500, which is quite high.

Try not to worry too much, dear friend.  I'm sure that all will turn out great.  Please let me know if you need anything.

Hugs!

Hi Icelandgirl

Thanks so much!  I hope it turns out well, too.

Here in the cash strapped NHS system they do two particular thyroid tests - I haven't got my readings on me just now but I felt shortchanged when I got them back.  That said I was told if something was amiss it would have been detected.  I'm going to probably ask for a proper referral to an endcrinologist if I can get one.

Unfortunately the health care system here seems pretty reactive rather than proactive so I should really see if I can get my symptoms monitored more closely.

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