Celiac With Swollen Thyroid And Normal Tsh?

[eatmeat4good]

Hi,

I have been gluten free now for 4 months due to severe DH and neurological Celiac symptoms which I learned about on this cite 4 months ago.

No medical diagnosis, but seriously miraculous results on the gluten free diet.

I got blood tests done last week because I noticed my thyroid is very swollen.

Dr. said yes, your thyroid is swollen.

I fully expected Hashimoto's but the Dr. said the TSH level was perfect, normal, and fine.

Now she wants me to do an ultrasound to determine if I have nodules or cancer.

Since I suffer from DH so badly, I have been avoiding iodine as much as I can in order to heal the sores.

Is it possible that this elimination of iodine (supposed to be temorary) has caused the thyroid to swell?

I am also taking Dapsone to treat the DH though I just started this.

I don't think a full thyroid panel was done, just the TSH.

Also, should I ask for the thyroid antibodies to be tested?

I feel like I should have the antibody test and full thyroid panel before I get the ultrasound.

I have no insurance.

I don't want to neglect this if it is nodules or cancer.

BUT I have to try to be smart about $ and it seems the thyroid could be swollen due to limiting iodine, or because it is working now that I have gone gluten free.

Or am I just in denial?

I guess I should do all 3: Thyroid panel, Antibody test, and Ultrasound.

What would you do?

Has anyone had a swollen thyroid and normal TSH level?

Has anyone had a swollen thyroid that resolved itself on the gluten free diet?

My TSH level was 0.781

normal range of .55 to 4.78

This is all very strange to me.

Any one with experience or opinions or more knowledge than me?

I haven't got the energy to do all the research I need to do about this thyroid issue. I've spent dozens of hours researching DH and Celiac in the hopes of getting well finally....and now my head is spinning with thyroid "butterflies".

Any help will be greatly appreciated.

[weluvgators]

Before I ever realized my gluten intolerance, I was diagnosed with idiopathic enlarged thyroid. So my thyroid is much larger than normal. I did have an ultrasound done when it was first discovered, and unfortunately, no one bothered to screen me for celiac or even mention that as a potential cause of my enlarged thyroid. My thyroid levels have always tested normal. The ultrasound did discover nodules, but they just said to follow up with an endocrinologist when I was done being pregnant.

I followed up with a celiac savvy endocrinologist because I had come to discover my gluten issues due to my children. She palpated it, said it was still large, ran some blood tests, said I was doing a great job on the diet, and sent me on my way. We did discuss an episode of suspected thyroiditis that I had had a couple of months prior to my visit. She didn't seem concerned, and didn't feel any more follow up was necessary. She then recommended a primary care doctor who was horrible . . . sigh . . .

I have since found a much better primary care doctor. We do keep a check on my thyroid levels - still always normal and I do not have *extensive* thyroid symptoms . . . but I do seem to have some minor indicators. I recently got sick, and I think it may have been viral. I felt the thyroiditis creeping back in . . . and it is seriously one of the scarier things to feel IMO. It impacts so many things when it gets swollen and sore.

So, yes, I have an enlarged thyroid that is prone to swelling, and my thyroid levels continue to be "normal". I am still trying to figure out what to do about it, and we continue to work on my overall health with targets of better supporting my adrenals and thyroid. I had never noticed my thyroid issues until after I went gluten free. I have had a doctor tell me that my enlarged thyroid should return to normal if I get my diet right, but I don't know that I believe him on that . . . it sure would be nice though (although I am confident that *just* a gluten free diet is not enough for me)! I have started supplementing with iodine, but I can't tell much difference . . . and I just got another case of suspected thyroiditis . . . so don't know if it helps or not. Not much help, but I can relate to your experience!

I hope you figure something out soon. And I would love to hear more about what you do figure out.

[cassP]

i think you should do all 3! full thyroid panel, ultrasound, and Antibodies tests. your TSH is perfect- but you have an swollen thyroid-

my best friend has just about every Hypo symptom there is- but her TSH too is perfect- i asked my Endocrinologist- what she would do with a patient like this- and she said she would test for the TPO antibodies- and if the patient had symptoms and antibodies- that she would then consider meds. so, it CAN happen. just like your previous docs not checking all the boxes with Celiac and Gluten Intolerance- you need to make sure they check all the boxes on your thyroid- esp. since it's swollen

make sure you advocate for yourself! it's your body and your life! i finally got in to a great Endocrinologist who's open minded- and even tho it sounded silly to ask for a Grave's antibody test (while i have Hashimoto's)- she agreed to cover that ground as well, which is great- cause now i know im positive on those as well- this will hopefully help my doc treat my hypo & hyper symptoms a little better with the meds.

good luck, hope you find your answers- and hope everything else is benign. also in addition to avoiding Wheat- you may also want to avoid Soy for now- as ive read both can aggravate thyroid antibodies

[Cypressmyst]

I had a swollen thyroid, or goiter, for well over a decade after I was put on Thyroid meds and for pretty much as far back as I could remember. Had an ultrasound that ruled out cancer or nodules and was just told that my thyroid was enlarged and that was the way it is. I had no insurance either and ended up paying $800 for that little revelation in 2005.

Funny that because after 2 months gluten free my thyroid was no longer enlarged. It was very strange to be able to feel my wind pipe for the first time. O_o

When I get badly glutened, often air borne, it swells back up for several hours or for the next day. My DH flairs up too. How gluten free are you? Have you checked your hair/beauty products? Soaps & Laundry Detergent? Do you live with a gluten eater or work at a place where you are exposed to gluten regularly? Some of us are very, very sensitive to such things and it could be keeping your anti-bodies active and attacking your thyroid and who knows what else. Air borne exposure won't give you the tummy troubles that ingestion will. In many ways it can be worse.

If you went to my Docter anything under 1 indicates a hyperactive thyroid. Very interesting and that is my General Practitioner (read yearly blood drawer) who I consider to be completely out of the loop of true health but who is covered by my insurance and five minutes down the road.

The DH will take time to clear up, not sure how creams are going to help but I'd be interested in your experiences there. Mine is pretty well gone except when I get into gluten. My husband's gets better all the time but very slowly, he had a severe case to start though.

I'd be careful of using iodine, if it isn't an iodine issue you can really, really do some damage from what I understand.

Dr. Clark Chiro has a

(He is a Functional Medicine Chiropractor) you may find helpful. There are 6 short videos so far I think. He has gusto for this stuff and I find him entertaining sometimes.

I'd hold off on shelling out money until we can take a harder look at your diet and lifestyle. No need to pay a doctor exorbitant fees if the answer is as simple as having your house go gluten free.

And finally, :hugs: I know the rollercoaster that is thyroid. I'm hoping to get off my meds entirely one day.

[eatmeat4good]

Thank you all very much.

I'm trying not to be scared and you have helped me a lot.

I appreciate all of you taking the time to write such nice long informative answers.

To answer some of your questions...

I'm as gluten free as I know how to be. I have learned I am very sensitive to slight CC so I have the whole house gluten free. It is just me and my son. His issues have all cleared up as a result. Teenage depression, muscle weakness, lack of motivation, asthma, and bad moods. Totally different kid. I'm thrilled about that.

I get confused reading labels on personal care products as to what all the long names are and whether they have wheat in them. So I use baking soda to brush my teeth, and Dawn dish soap for dishes, laundry, and shampoo. (Seriously! It works great.) I do have to use conditioner though, but am careful with it.

Soy- I avoid it as much as I possibly can. I can't believe it is allowed in the food chain with all the hormonal things it does. I miss mayo, but the only soy I allow is soy lecithin because I can't possibly give up my chocolate what with everything else that is gone. I hope that doesn't effect the thyroid.

My DH is doing great. I think I'm about to be lesion free for the first time in 7 years. Dapsone is working great. I've been on it one week and almost all clear. No pain.

We never eat out anymore because restaurants use iodized salt and my skin can't take it. Plus we are both really sensitive to CC. So we prefer our simple meat and vegetables at home. And chocolate of course.

I've been snowed in for 3 days with the little old lady I take care of. I have no computer access there. So I lay there on the couch wondering what you all would have to say about my thyroid and lay there thinking I can feel it growing. Sheez! Glad I got home and could finally read your replies.

Once again, thanks for all your answers and support. I am so relieved to have this site and you guys for support and answers. Thanks

[Cypressmyst]

Gotta rub in the chocolate ne?

Can you post your conditioner? We can figure out if it has gluten in it.

There is soy free chocolate out there. Just have to look for it. Enjoy Life makes a tasty chocolate bar and I love Jocalot Lara Bars. Because yes, even a little soy lechitin can mess you up, it depends on the person certainly but still.

I still suspect gluten over soy though and even if you are careful not to get it in your mouth it can still be inhaled or even absorbed through the skin in some people.

Dawn shampoo hey? Very good to know.

Glad you are feeling better about things! That is what we are here for!

[eatmeat4good]

Oh darn, maybe I do have to give up the chocolate. I will if it's messing with my thyroid.

Yes, I use Dawn Shampoo! I love it...little goes a long way and it's cheaper than those expensive ones....umm It's my version of Suave!

It's a great laundry stain remover too. Maybe I should write Dawn and tell them to advertise as gluten free shampoo!?

My conditioner is Aussie Mega Three Minute Miracle.

Do you need me to post all the ingredients?

Cause I can't even read them.

I hope you can google the ingredients list?

I just read in another post that vitamin supplements don't have to list if they contain gluten. Foods do but supplements don't. I take a LOT of vitamin supplements but have been just going by the ingredients on the label. I was relying on the fact that I thought allergens had to be disclosed in vitamins too. I'm still confused about that.

If you need the ingredients, I will get out the magnifying glass.

Thanks so much

[Cypressmyst]

A quick Google says your conditioner is ok. Your vitamins really may not be. A lot of vitamins have gluten in them. Post them here or do a Google search for them and the words gluten free and see if anything comes up.

I should get chocolate back. Right now I am on a modified elimination diet for the next few months still to let my poor gut rest. Chocolate is hard to digest so...

But I figure it is the least I can do for my poor body...all the junk I did to it for so many years. It was such a trooper.

You SHOULD write Dawn. That is great!

Soy may be your issue. But also just so you know 4 months seems to be the magic number for when some folks start getting sensitive to air borne gluten. Me, my cousin, and my friend all started reacting at 4 months. Don't know what is magic about it but just putting it out there for your consideration.