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Gluten Intolerence And Thyroid Problems


tiffjake

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tiffjake Enthusiast

I just found out that I am having thyorid issues that were being masked by the gluten before. I have two tests scheduled for next month and might have to take radioactive iodine to kill my own thyroid and then take meds for life. My doc and I talked about the possability that the gluten reaction also had a hand in attacking my thyroid, causing hypothyroidism. Anyone else have this or know anything about it? Thanks, Tiffany


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Canadian Karen Community Regular

Hi! Me too. Celiac and hypothryoidism. It is quite common actually....

Here is a really good thread discussing it.....

Open Original Shared Link

Happy reading!

Karen

lonewolf Collaborator

I have hypothyroidism too, but found out that I don't have either of the main genes for Celiac. I'm most definitely gluten intolerant though, so there's a connection somewhere. My mother and both sisters are also on thyroid meds but none of them are off gluten.

Silver-naki Rookie

:( I've got the Thyroid issues and the "gluten" issues as well. And yes, I believe these two DO "tie-in" together in most cases..... yet again, everyone is different. I'm still on the same amount of Synthroid medication as I've been taking for years, & discussing this over with my M.D. Doctor, he doesn't want to do much with my Thyroid just yet, until I've been on my "gluten-free" Diet for about 6 months.... Hmmmm, makes me wonder what "they" think sometimes???

In my case, it boils down to "messed-up" Thyroid levels & messed-up "gluten-levels!" :angry:

Nancym Enthusiast

Heck yeah, I had my thyroid "nuked" 18 years ago. I wish I hadn't rushed to getting it nuked though. It can be challenging to get the thyroid meds dosed right, and doctors are into a habit with underdosing thyroid meds you so you feel awful all the time. Anyway, I wish at the time I had given it time and let it go into remission just taking the thyroid suppressing hormones. I was young, impatient and didn't want to give the therapy time to work, and my doctors painted the RAI as easy and simple and the life time treatment as a piece of cake.

Also I have read that some people with autoimmune thyroiditis (Graves Disease I presume) will go into remission if they're gluten intolerant and they stay gluten free.

So my advice is give it time to go into remission, don't rush to RAI.

jkmunchkin Rising Star

Hi Tiffany,

I also have a thyroid problem. From the research I've done it seems pretty common that people with celiac have other auto-immune disorders, the most common being a problem with their thryoid.

Rusla Enthusiast

I have Hashimoto's Hypothyroidism. When they discovered the nodules because I hounded the doctor to do an ultrasound and then the nodules were growing and I was starting to choke when I ate 4 specialists turned me down to see me. They wanted them to be bigger then they would operate and remove them. I went to the doctor who is signing the Rev. Canada papers for me and he gave me Synthroid. Now, the Synthroid has shrunk the nodules, I have to remain on the Synthroid or they will probably come back because I have 3.5 times the antibodies any normal person should have for thyroid.

The other jerk doctors just wanted to let them get bigger and operate instead of trying to shrink them.

Silver_Naki, I don't think the majority of doctors ever think, it certainly seems like that around here.


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tammy Community Regular

Yes, I do. Gluten sensitive, hypothyroid, severe adrenal fatigue and casein sensitive.

And, I've made it to 40!!!!!!! :blink:

Rachel--24 Collaborator

I have Graves Disease and had radioactive iodine 3 years ago. This is before I found out about gluten . How long have you been gluten-free? My advice is to wait on the RAI and see if the diet helps the situation. You can take meds first before making the decision to go through with RAI. Once you have RAI....there is no going back and you WILL have to take thyroid meds for life.

You wrote that you are Hypothyroid. I'm a little confused. Why would you need RAI for Hypothyroid? Usually people who have HYPERthyroid get RAI...to shut down the thyroid altogether because it is "overactive". Hypothyroid is the RESULT of RAI.

ms-sillyak-screwed Enthusiast

Yes, I have it too.

I was hyperactive as a kid and all my adult life, you know A-type personality. Then super major chronic stress hit me, didn’t sleep, I ate bad food. In 2001 I got hit with both of these diseases at the same time. Which came first anyone know?

About 5 years ago I realized the food I was eating was causing steatorrhea diarrhea that has me weak and frail and I was having episodes where I would have seizures and pass out. It was frightening and still is I’m a divorcee` alone with no kids or new hubby. A gastro doc after co·lon·os·co·py said “spatic colon/IBS” and would NOT listen about celiac disease. I also saw an en·do·cri·nol·o·gist she said that if I calm my colon and the borderliner hyper - thyroid should balance it self.

I went gluten, dairy and stress free. I ate in my diet things like rice, potatoes, corn chips, night shade veggies, nuts and etc. I did very well. Or so I thought for 4 years – super major stress hit again – This time I grew a hot nodule on my thyroid. I had the RAI treatment. It nuked and burned up my thyroid too. I went from hyper immediately to hypo. The seizures following the RAI were terrifying. :o I thank God my 85 year old father :wub: was with me to care for me. 4 months following the RAI the doc put me on thyroid medication. It was a challenge to get it right. I've tried many I can no longer eat corn, and it, dairy and gluten are in some form or some combination is in most thyroid medications. It’s been a year of challenges much greater then when I first realized I had celiac disease. I wish I could say I feel great. ;) Ha!

Since this last episode before the RAI’s I am no longer able to eat so so so many other types of food. Things like apples, oranges, night shade veggies, nuts, legume beans, and much more…

Celiac and thyroid problem which one came first? :huh:

sspitzer5 Apprentice
I just found out that I am having thyorid issues that were being masked by the gluten before. I have two tests scheduled for next month and might have to take radioactive iodine to kill my own thyroid and then take meds for life. My doc and I talked about the possability that the gluten reaction also had a hand in attacking my thyroid, causing hypothyroidism. Anyone else have this or know anything about it? Thanks, Tiffany

Yep, me too. Hashimoto's. I found out about that first and then spent the next 8 years wondering why I still felt crappy. Then I found out about the gluten thing. It's hard to deal with because some of the symptoms overlap and you don't know which thing is causing which symptom. Finally starting to feel a little better after a year gluten free. I think I have other food intolerances though, so figuring that out seems to be the next piece of the "why I feel crappy" puzzle. But, I think there's some light at the end of the tunnel lately. :-)

Susan

Nadtorious Rookie

My mom has Grave's Disease. None for me though (at least not yet :unsure: )

tiffjake Enthusiast
I have Graves Disease and had radioactive iodine 3 years ago. This is before I found out about gluten . How long have you been gluten-free? My advice is to wait on the RAI and see if the diet helps the situation. You can take meds first before making the decision to go through with RAI. Once you have RAI....there is no going back and you WILL have to take thyroid meds for life.

You wrote that you are Hypothyroid. I'm a little confused. Why would you need RAI for Hypothyroid? Usually people who have HYPERthyroid get RAI...to shut down the thyroid altogether because it is "overactive". Hypothyroid is the RESULT of RAI.

This is the way my doc explained it. I had a thyroid test in June because I am over weight and have several hypOthyroid symptoms. It was normal then. I went gluten free in December. I had it check at the ob/gyn along with my hormones (going off of the pill) and it was WAY off and looked seriously HYPO. I took that to my primary doc who ordered his own tests, and his came back normal. His thought is that my thyroid is sputtering and dying and trying to keep up, but is failing, so it is working sometimes and not others. I have the thyroid scan and ultrasound scheduled for feb 3rd to see if there are spots or goiter (?) and then go to an endocronologist about the RAI and stuff. He said that it might be better to kill my own off (since it is slowly dying) and replace the stuff with meds instead of waiting and waiting for it to get worse. I don't know after reading everyones response. I don't want to just jump to killing my own off.........

tiredofdoctors Enthusiast

Unfortunately, I'm with you on this one. I had Hashimoto's Thyroiditis. I had an enlarged thyroid which had wrapped around the side of my neck behind my trachea and had also grown down under my breastbone. I had it removed because it had areas of hemorrhage -- a potential for the development of thyroid cancer. When I was first diagnosed with Gluten Ataxia, the neurologist said that I should have had my thyroid removed three years prior -- evidently, the autoimmune "watershed" is very prevalent in gluten intolerance.

  • 2 weeks later...
tiffjake Enthusiast

Well I have had my thyroid scan and ultrasound this week and now I am just waiting for the results. When the tech was doing the untrasound I felt like I was choaking (sp?). I didn't realize how tender my neck was! Guess my thyroid is enlarged after all. For those who have had to have the treatment for Hashimoto's (sp? again) what was it like? I am worried. I am starting a new job and going back to college. I am worried that something will have to be put on hold. What is difficult? Time consuming? I don't want to sould like I don't care about my health, it is just bad timing for something else to be going wrong!!! LOL.

mommida Enthusiast

My treatment for Hashimoto's was just to go on the thyroid medication.

Hashimoto's can make you thyroid levels go over active and underactive. The tests should find the tell tale characteristics of Hashimoto's, one of which is one side of the throid will be enlarged more than the other.

There is a link between Celiac and auto immune thyroid diseases. If you are diagnosed with one auto immune disease, the statistecs say you are very likely to develop another.

Laura

Judyin Philly Enthusiast
Well I have had my thyroid scan and ultrasound this week and now I am just waiting for the results. When the tech was doing the untrasound I felt like I was choaking (sp?). I didn't realize how tender my neck was! Guess my thyroid is enlarged after all. For those who have had to have the treatment for Hashimoto's (sp? again) what was it like? I am worried. I am starting a new job and going back to college. I am worried that something will have to be put on hold. What is difficult? Time consuming? I don't want to sould like I don't care about my health, it is just bad timing for something else to be going wrong!!! LOL.

Ok, too tired to seach this on my own. Can you guys tell me the difference between

Hashimoto's (sp?

Graves Disease

thyroiditis

goiter

Back in the 40's they believed in giving x-rays they called it now i'm wondering if it was nuking..and I did't know it-- was a child then in 3rd grade...Said i was getting alot of infections and they did it for toncilitis and my brother for adenoids been on thyroid since 3rd grade.

Geeze, I had my goiter removed in 1969 It was huge

Then had thyroiditis and dr said 'it's just like toncilitis..itis infection of...gave me some pills who know s what they were-- think antibotic...

Ever since I've gained weight reguardless of what it did

IBS since college...

Now my neice whose 34 and jsut had second baby--was dx'd with graves while pg and on the 17th they are nuking her for it Her b/p was really high and racing heart all during pg.

When you start compairing notes..here...it's so scarey to me.

All my family is over weight. she's my brothers girl..he's over weight too...

My mom just passed in Aug and I was dx'd in June...I"M SO SURE SHE HAD IT...ALL THE SAME SYMPTOMS AS MINE...

none of us had ever heard of celiac disease,

I'm so depressed now...I just thought I had a very rare tumor/bone syndrome...

I'm going to cry.

Judy :(

but first I'm getting off line..ok__just overwhelemed there are about 15 emails waiting and i bet i've had 20-30 today

Rusla, I'll have to do the forwards re: dentist tomorrow.

can someone else please do the dentist thread. I'm going into my bed.....

Good nite love you all

thomas3000 Rookie

Don't mess with your thyroid!! In an italian study the autoimmune attack on the thyroid was completely halted on all patients after being on the gluten free diet for 3-6 months. Gluten is the cause and stay away from soy products as well. In most thyroid problems infections are usually found later on after the gut heals and clearing these will provide a more complete healing. I suggest you contact biohealth diagnostics and they will find a doc for you to find the root causes of your health problems.

tiredofdoctors Enthusiast

My initial treatment was just to take Synthroid. It increased the levels of thyroid hormone in my system so that my thyroid didn't have to work so hard. It GREATLY reduced the size of the thyroid. Once the idiot endocrinologist I had to see took me off it, I begin having tons of trouble, then had to have it removed. Prior to that, though, treatment was a breeze. .. . . Lynne

sspitzer5 Apprentice
Don't mess with your thyroid!! In an italian study the autoimmune attack on the thyroid was completely halted on all patients after being on the gluten free diet for 3-6 months. Gluten is the cause and stay away from soy products as well. In most thyroid problems infections are usually found later on after the gut heals and clearing these will provide a more complete healing. I suggest you contact biohealth diagnostics and they will find a doc for you to find the root causes of your health problems.

I don't agree with this advice. If you'd had hasimoto's for a while, your thyroid may already be permenantly damaged. If you thyroid is damaged, being on a gluten free diet will not fix the damage that was already done - although hopefully it will prevent it from getting worse.

Susan

Judyin Philly Enthusiast

Just talked to my brother.

This will only makes sense if you've read my previous post.

He said we were 'radiated'

is that same as nuked?

He said it was 'shrink' our tonsils and adenolids guess it did but also killed our thyroids in the process.

then in 78 had the goiter taken out.

just some info in case anyone out there has any ideas for me.

Going to call my dr and discuss with him..he loves to research the internet so this will give him a heads up for getting info for the apt i want to schedule...something in the back of my mind said "don't jump in for the celiac disease panel ck (they wouldn't pay for gene testing) now i'll have the thyroid and can adrenals be checked in bood too.

also was ck'd for 2 years with endocrinologist for 'cushing' said i didn't have it BUT the 7 day 24/7 urine catch test...what a pain when working 40 hrs a week....they lost ones days collection in route...go figure.

did't do the test agin..inconclusive...as have 3 bone cancer biopsy..I WISH WE HAD SPELL CK ON HERE

JUDY

Guest mvaught
My initial treatment was just to take Synthroid. It increased the levels of thyroid hormone in my system so that my thyroid didn't have to work so hard. It GREATLY reduced the size of the thyroid. Once the idiot endocrinologist I had to see took me off it, I begin having tons of trouble, then had to have it removed. Prior to that, though, treatment was a breeze. .. . . Lynne

I got dx with the hypothyroidism in high school and a few years after that had an endocrinologist take me off of it for a year and refuse to put me back on it - i got so sick and weak - i couldn't even itch a scratch much less get out of bed. i went to a gen prac. that seemed to know about hypothyroidism and he put me right back on it and i got better almost immediately. i have had much success on .112m of the synthroid. although i have had several doctors try to lower it - i tell them that it absolutely does not need to be lowered (i have been on too much and know the symptoms so i know this dosage is right) and after a fight - i finally have one doctor that is willing just to keep me on what i am on (believe me it was a big fight).

anyway, all of this was before i knew about celiac, but i the time when i was off of it, there was a significant difference (hair falling out - gained 20 lbs..although this was a point of contention between myself and the doc because at the time he took me off and when i was in high school, i was under 100 lbs - so he described my 20 ls weight gain as being a normal weight, which it was, but not for me. my thinness has always been a problem, since many people with the hypo- are bigger. right now, i am only 108 - but that is about a 10-15lb weight loss from being sick from the celiac which i don't seem to gain back)

anyway, just thought i'd share...

and i have also heard that ALL thyroid problems are auto-immune related.

tiredofdoctors Enthusiast

mvaught: I'm starting to believe the same with regard to thyroid conditions. I was first diagnosed with an "enlarged thyroid" at age 12-13 with normal TSH T3, T4. It is NOT normal, however, for a kid to have a goiter! I was also this very hyperactive, skinny kid who had diarrhea ALL THE TIME. They blamed it on the fact that I had to be on antibiotics a lot. I no longer have the stomach difficulties, am celiac negative, but gluten has now begun to destroy my brain, retinas and peripheral nerves. I CERTAINLY think that all thyroid conditions have an autoimmune predisposition, if not a genuine autoimmune root. Both of my kids are having thyroid difficulties (19 and 23); our GP is doing the whole panel including antibodies on both of them. I'm not taking any chances with either.

beelzebubble Contributor
Don't mess with your thyroid!! In an italian study the autoimmune attack on the thyroid was completely halted on all patients after being on the gluten free diet for 3-6 months. Gluten is the cause and stay away from soy products as well. In most thyroid problems infections are usually found later on after the gut heals and clearing these will provide a more complete healing. I suggest you contact biohealth diagnostics and they will find a doc for you to find the root causes of your health problems.

i've been gluten-free for almost 3 years and i'm still producing massive amounts of antithyroid antibodies. i even had to raise my synthroid dosage. i'd hoped that it would stop after going gluten-free, but alas...

thomas3000 Rookie

Have you done a stool test for parasitic, bacterial, or fungal infections? I suggest you do so and i'll refer you to a doc in your area if you wish. What about dairy and soy products? Are you still using those? Soy can mess up the thyroid as well. It has been scientifically proven that if you are gluten intolerant you most certainly have infections. (Giardia, cryptosporidium, c. difficile, blastocystis hominis, h. pylori, etc..) It's very common in people with celiac, so i would suggest you get tested for these to rule them out..

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      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
    • chrish42
      All I can say is this site is great!
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