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Synthroid


wowzer

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wowzer Community Regular

When I saw the post that Synthroid may no longer be gluten free, I wondered if I am getting glutened from it. I started this prescription bottle Dec. 1. I know with all the holidays and so forth that I may have got glutened that way. I just feel like I'm going back to 3 years ago. It took me almost a year to figure it out. Of course my glutening symptoms hit the mucous tissues, so not fun. They aren't as bad but so aggravating. When I talked to Abbott today, they told me how they send out surveys to check with their suppliers if they use gluten. Because they are taking their word that there is no gluten, they aren't saying that synthroid is or isn't gluten free. That isn't so reassuring to me. I also called my pharmacist and she told me that Abbott told her that they are making synthroid the same way they always have. I'm not sure what to make of this. I just want to know is it gluten free or not. Abbott did admit they were flooded with calls today although I didn't wait too long. Just wonder what do you think about this?

Wendy


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disneyfan Apprentice
When I saw the post that Synthroid may no longer be gluten free, I wondered if I am getting glutened from it. I started this prescription bottle Dec. 1. I know with all the holidays and so forth that I may have got glutened that way. I just feel like I'm going back to 3 years ago. It took me almost a year to figure it out. Of course my glutening symptoms hit the mucous tissues, so not fun. They aren't as bad but so aggravating. When I talked to Abbott today, they told me how they send out surveys to check with their suppliers if they use gluten. Because they are taking their word that there is no gluten, they aren't saying that synthroid is or isn't gluten free. That isn't so reassuring to me. I also called my pharmacist and she told me that Abbott told her that they are making synthroid the same way they always have. I'm not sure what to make of this. I just want to know is it gluten free or not. Abbott did admit they were flooded with calls today although I didn't wait too long. Just wonder what do you think about this?

Wendy

I just read your post after reading others on this site and online. I am very concerned about this so I just called Abbott Labs also. The gentleman I spoke to was very helpful. He said they have had MANY calls regarding whether synthroid is gluten free or not. According to him, Abbott has never claimed their synthroid was gluten free. They DO NOT evaluate their product for gluten. They receive information from the supplier that indicates there is no wheat, barley, oats, rye, malt or spelt in the synthroid but it is not evaluated for gluten. There is no way of knowing if any of those listed contain any gluten. He was not able to refer to any other manufacturers of synthroid as each could be different.

This is very scary. I looked at the ingredients listed on their website and it does list corn starch. I know for a fact I cannot digest corn.

I am going to ask my doctor about this because for the last several months I have been on this prescription, I have felt like something was not right and I couldn't figure out what it was. Could it be my synthroid?? I will be very upset if it is because I have been gluten free for about two years and was really making some progress. Lately, I have had a few unexplained reactions that I cannot pinpoint to anything specific.

What do we do?? I googled Levoxyl and it had the name "levothyroxine sodium" right under it. The only thing he said was that it may have different ingredients or a different manufacturer may specifically test for gluten.

ANY SUGGESTIONS???

Gemini Experienced
I just read your post after reading others on this site and online. I am very concerned about this so I just called Abbott Labs also. The gentleman I spoke to was very helpful. He said they have had MANY calls regarding whether synthroid is gluten free or not. According to him, Abbott has never claimed their synthroid was gluten free. They DO NOT evaluate their product for gluten. They receive information from the supplier that indicates there is no wheat, barley, oats, rye, malt or spelt in the synthroid but it is not evaluated for gluten. There is no way of knowing if any of those listed contain any gluten. He was not able to refer to any other manufacturers of synthroid as each could be different.

This is very scary. I looked at the ingredients listed on their website and it does list corn starch. I know for a fact I cannot digest corn.

I am going to ask my doctor about this because for the last several months I have been on this prescription, I have felt like something was not right and I couldn't figure out what it was. Could it be my synthroid?? I will be very upset if it is because I have been gluten free for about two years and was really making some progress. Lately, I have had a few unexplained reactions that I cannot pinpoint to anything specific.

What do we do?? I googled Levoxyl and it had the name "levothyroxine sodium" right under it. The only thing he said was that it may have different ingredients or a different manufacturer may specifically test for gluten.

ANY SUGGESTIONS???

I was the one who posted about Synthroid not being able to guarantee gluten-free status. I got my information from glutenfreedrugs.com, as this is the site that I use to check for gluten-free status in meds. I personally use Levoxyl myself, which is the generic form of Synthroid. It works beautifully for me and costs very little....about $20.00 for a 2 month supply through my insurance. Even if you bought it out of pocket, it is much, much cheaper than Synthroid.....which is the same med.

I called to verify that Levoxyl is gluten-free and it is. I would suggest switching meds and maybe if they lose enough business, they will start testing for gluten-free status. I doubt if you take Synthroid you will have any problems with Levoxyl, although I have no idea if it contains corn.

Annoying, isn't it? Seeing as how many people with celiac disease also have low thyroid, you'd think they would smarten up about the gluten thing!

wowzer Community Regular

Gemini, Thanks so much for bringing up the information about the synthroid. I have been taking it for over 20 years. I was told that once you take the name brand, they don't want you to take anything else. I am glad to know that the generic is gluten free. I did talk to the pharmacist about it and she said that it could be done but have never talked about it with my doctor. I will now.

disneyfan, I am in the same boat as you. I've been gluten free a little over 2 years now. I have to say that since December 1st, I haven't felt quite right. I did chalk it up to the holidays. I was careful, but I'm not so sure my family was if you know what I mean. I haven't taken my synthroid since I read Gemini's post. I know that isn't the right answer, but I did get a pretty good nights sleep last night. I will say Abbott has a nice thing on their site, by symptoms it tells if you are getting too much or not enough synthroid. Of course I have a couple on both sides, so I am sure that has to do with how I absorb it. I do aborb many medications strangely, so I'm not sure how to deal with this. I also have an antibiotic to take, which I am dragging my feet because I am still trying to find out it if it is gluten free. I have had so many bad reactions to medication that I would rather suffer than take a chance at what the medication might do to me. I am frustrated and just wonder what I should do. I am glad to hear that Abbott is getting flooded with calls. It would be nice if they do something about it, but then hearing they never said it was gluten free to begin with is very comforting either.

Wendy

curiousgeorge Rookie

I happily take armour thyroid and feel 100% better on it than I ever did on synthroid. Most people who try it.

disneyfan Apprentice
Gemini, Thanks so much for bringing up the information about the synthroid. I have been taking it for over 20 years. I was told that once you take the name brand, they don't want you to take anything else. I am glad to know that the generic is gluten free. I did talk to the pharmacist about it and she said that it could be done but have never talked about it with my doctor. I will now.

disneyfan, I am in the same boat as you. I've been gluten free a little over 2 years now. I have to say that since December 1st, I haven't felt quite right. I did chalk it up to the holidays. I was careful, but I'm not so sure my family was if you know what I mean. I haven't taken my synthroid since I read Gemini's post. I know that isn't the right answer, but I did get a pretty good nights sleep last night. I will say Abbott has a nice thing on their site, by symptoms it tells if you are getting too much or not enough synthroid. Of course I have a couple on both sides, so I am sure that has to do with how I absorb it. I do aborb many medications strangely, so I'm not sure how to deal with this. I also have an antibiotic to take, which I am dragging my feet because I am still trying to find out it if it is gluten free. I have had so many bad reactions to medication that I would rather suffer than take a chance at what the medication might do to me. I am frustrated and just wonder what I should do. I am glad to hear that Abbott is getting flooded with calls. It would be nice if they do something about it, but then hearing they never said it was gluten free to begin with is very comforting either.

Wendy

I have been thinking about this all day! It's driving me nuts! First, please don't stop taking the synthroid as that could create more problems for you. I have been on thyroid meds for about 16 years. I have taken both generic and synthroid. Most of my docs over the years prefer the brand and I seem to do better on that. The only time my thyroid was off the charts was when I discovered I had a gluten problem. Once I went gluten free, I was absorbing my synthroid much better and had to lower my dose. My labs have been stable since and my thyroid levels have been in balance (tweeked a bit to lower the dose) while staying gluten free. So my thought is that synthroid must be ok to take because if not, my levels would still be off as I would be getting glutened. Make sense? I do know that I was switched from the generic a while ago but I can't remember if it was prior to gluten free.

I agree with wowzer in saying that once you take the brand, you should not take anything else. My doctors have always tried to be consistent and I always asked for the brand thinking that's what I was supposed to take.

The ingredient in levoxyl that would be questionable is the corn starch and the dyes. But most postings say its gluten free. I'm getting more confused with everything I read. Does corn contain gluten or not or is it just that corn is not digested well by some people?

I'm tempted to stay with my synthroid if my levels this time are ok. Something must be working and its getting absorbed.

I also know over the holidays I probably ate something I should not have so it's hard to pinpoint any problems I may be having. As for your absorption, you may want to watch when you take your synthroid and make sure you are not taking it with or close to any foods that may prevent absorption. I was reading online a few weeks ago that some people chew their synthroid tablet and that helps.

Good luck!

wowzer Community Regular

Hi, I am wrestiling with calling my doctor on this. I have to say, I have the same calm feeling since not taking it as when I went gluten free. My thyroid levels haven't changed since going gluten free. I also stopped HRT cold turkey when they couldn't guarantee that was gluten free. It was when I first went gluten free 2 years ago. I had no side affects from that so I probably wasn't absorbing it to begin with. Thank you for your concern. Wendy


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Gemini Experienced
Gemini, Thanks so much for bringing up the information about the synthroid. I have been taking it for over 20 years. I was told that once you take the name brand, they don't want you to take anything else. I am glad to know that the generic is gluten free. I did talk to the pharmacist about it and she said that it could be done but have never talked about it with my doctor. I will now.

disneyfan, I am in the same boat as you. I've been gluten free a little over 2 years now. I have to say that since December 1st, I haven't felt quite right. I did chalk it up to the holidays. I was careful, but I'm not so sure my family was if you know what I mean. I haven't taken my synthroid since I read Gemini's post. I know that isn't the right answer, but I did get a pretty good nights sleep last night. I will say Abbott has a nice thing on their site, by symptoms it tells if you are getting too much or not enough synthroid. Of course I have a couple on both sides, so I am sure that has to do with how I absorb it. I do aborb many medications strangely, so I'm not sure how to deal with this. I also have an antibiotic to take, which I am dragging my feet because I am still trying to find out it if it is gluten free. I have had so many bad reactions to medication that I would rather suffer than take a chance at what the medication might do to me. I am frustrated and just wonder what I should do. I am glad to hear that Abbott is getting flooded with calls. It would be nice if they do something about it, but then hearing they never said it was gluten free to begin with is very comforting either.

Wendy

I think the problem with Synthroid is that they claim they can no longer guarantee their product is gluten-free. They may be afraid of liability considering they do not test for gluten content. They shouldn't have to test if they use decent, gluten-free fillers instead of crappy cheap ones! Anything to save a buck and increase profit. I am just guessing on that one but at one time, Synthroid was listed as gluten-free so why the change?

As for switching brands, there is no truth to the idea that you shouldn't switch brands. I switched from Armour to Levoxyl because Armour wasn't doing it for me.

I have nothing against Armour but it does not work for everyone and there is no difference between the natural and synthetic forms of thyroid hormone as far as function is concerned. One is not better than the other. Funny enough, my doctor said the reason she switched me was also because there is a trick that seems to work in many people when your autoimmune reaction is difficult to bring down. By switching brands, very often that alone is enough to knock the autoimmune reaction down.....they do not know why but it works well in some people. Has nothing to do with the T3 and T4 levels......my antibody levels were through the roof and she was very worried about that. With Armour, nothing moved. By switching to Levoxyl, I had a sharp drop in my autoimmune reaction and I am almost into the normal range now. That particular brand has worked extremely well for me so do not be hesitant about trying Levoxyl if you have been on Synthroid. It's the generic form and totally gluten-free.

If you need to take an antibiotic for something, take it! Check the drug list and call the manufacturer to verify but make sure you take it. Infection is nothing to fool around with! I recently went through this with a sinus infection. My doctor always prescribes a Z pack (azithromycin) and only a couple of brands are gluten-free. CVS called around the city where I live to see who stocked the TEVA brand and we found it, funny enough, at a non-chain pharmacy. The other brand that everyone seems to have is from Pfizer and it is not gluten-free......which figures! The brand I took is made in Israel and is one of the few that are gluten-free so that shows you how backwards we are here in the States! How hard can it be to make an antibiotic gluten-free? <_<

Gemini Experienced
Hi, I am wrestiling with calling my doctor on this. I have to say, I have the same calm feeling since not taking it as when I went gluten free. My thyroid levels haven't changed since going gluten free. I also stopped HRT cold turkey when they couldn't guarantee that was gluten free. It was when I first went gluten free 2 years ago. I had no side affects from that so I probably wasn't absorbing it to begin with. Thank you for your concern. Wendy

Wowzer...I use bio-identical hormones, which are rubbed into your forearm and they are gluten-free. They are formulated to be absorbed through the skin so I double checked and the compounding pharmacy was great about it. Not sure if you are still interested in using them but it's a great, and safer, I think, alternative!

  • 6 months later...
blistovmhz Newbie

I have been on Synthroid for 2 years, and even with a TSH of 0.5 and "normal" T4 levels (they don't check for T3...), I've never felt well since being diagnosed with Hashimotos (AutoImmune Hypothyroidism).

I was diagnosed with Celiac disease 10 months ago, and went gluten free immediately, with 2 or 3 slip ups since... Despite that, my condition has gotten progressively worse.

I have been historically, very healthy and active.

Since the Celiac diagnoses, I have not been able to eat more than half what I normally would, I've been chronically dizzy/nauseous, had massive cognitive impairment, heart palpitations, anaemia, and its gotten so bad several times, that I've had to take myself to the ER before I start passing out. Last time I was in ER, I couldn't remember my name, couldn't write, and I passed out and collapsed in Triage several times before seeing a doctor 8 hours later, at which point I felt fine.

Because nothing has gotten better, and there's no way to tell which symptoms belong to which disease, after much research, I decided to switch from Synthroid, to a combination T3/T4 replacement. Took me several months to convince my doc to write the prescription, and because I have no faith in humans, I checked with the maker of the replacement dessicated thyroid he'd given me, for gluten. Sure enough, it has gluten added. I followed up by checking Synthroid, and again, added gluten. I've since discovered, that there is no gluten free thyroid replacement legally available in Canada as far as I can tell. I've checked with 10 chain pharmacies, 2 university med labs, and 4 doctors, and of the 16 people I spoke to, only 1 understood why a Celiac sufferer, would require a gluten free thyroid replacement... even after explaining to them, the relationship between Celiac and Gluten. Grrrrrr and Sigh....

What do I do here? Anyone know of any thyroid replacement at all, that is gluten free? Of those available, are any legally available in Canadia?

My TSH is now up to 85, and I'm about 24 hours from moving to the US.

UPDATE: My doctor's office just called me back, and told me they are aware that both thyroid replacements they've prescribed, contain an unknown amount of gluten, but that I shouldn't worry about it. I told them I AM concerned, as I have gotten progressively worse with neurological and physical symptoms of both hypothyroidism as well as gluten ingestion. I've tracked down a pharmacist who carries Armour. The pharmacist actually chuckled as I explained my predicament, and he confirmed that many people have called with the same story, switched to Armour, and were better a week later.

I've called my Doctor and sorta cornered him into taking me seriously for once, and he's supposedly faxing a prescription over to the pharmacist now.

Gemini Experienced
I have been on Synthroid for 2 years, and even with a TSH of 0.5 and "normal" T4 levels (they don't check for T3...), I've never felt well since being diagnosed with Hashimotos (AutoImmune Hypothyroidism).

I was diagnosed with Celiac disease 10 months ago, and went gluten free immediately, with 2 or 3 slip ups since... Despite that, my condition has gotten progressively worse.

I have been historically, very healthy and active.

Since the Celiac diagnoses, I have not been able to eat more than half what I normally would, I've been chronically dizzy/nauseous, had massive cognitive impairment, heart palpitations, anaemia, and its gotten so bad several times, that I've had to take myself to the ER before I start passing out. Last time I was in ER, I couldn't remember my name, couldn't write, and I passed out and collapsed in Triage several times before seeing a doctor 8 hours later, at which point I felt fine.

Because nothing has gotten better, and there's no way to tell which symptoms belong to which disease, after much research, I decided to switch from Synthroid, to a combination T3/T4 replacement. Took me several months to convince my doc to write the prescription, and because I have no faith in humans, I checked with the maker of the replacement dessicated thyroid he'd given me, for gluten. Sure enough, it has gluten added. I followed up by checking Synthroid, and again, added gluten. I've since discovered, that there is no gluten free thyroid replacement legally available in Canada as far as I can tell. I've checked with 10 chain pharmacies, 2 university med labs, and 4 doctors, and of the 16 people I spoke to, only 1 understood why a Celiac sufferer, would require a gluten free thyroid replacement... even after explaining to them, the relationship between Celiac and Gluten. Grrrrrr and Sigh....

What do I do here? Anyone know of any thyroid replacement at all, that is gluten free? Of those available, are any legally available in Canadia?

My TSH is now up to 85, and I'm about 24 hours from moving to the US.

UPDATE: My doctor's office just called me back, and told me they are aware that both thyroid replacements they've prescribed, contain an unknown amount of gluten, but that I shouldn't worry about it. I told them I AM concerned, as I have gotten progressively worse with neurological and physical symptoms of both hypothyroidism as well as gluten ingestion. I've tracked down a pharmacist who carries Armour. The pharmacist actually chuckled as I explained my predicament, and he confirmed that many people have called with the same story, switched to Armour, and were better a week later.

I've called my Doctor and sorta cornered him into taking me seriously for once, and he's supposedly faxing a prescription over to the pharmacist now.

And people here in the US think socialized medicine is a good thing? :huh:

Your TSH is 85?!?!? That is just plain malpractice! I am glad you are able to get what you need but the doctor telling you that small amounts of gluten are acceptable is totally ignorant and gave you life threateningly bad advice. Is he aware that thyroid meds need to be taken EVERYDAY?

I know for a fact that Levoxyl and Armour are gluten-free so I hope you can get either one on a continual basis. If not, you could move to the US but with the current administration trying to pass the same kind of health care as Canada has, it isn't boding well for Americans either! :o

Don't take no for an answer from the doctor....this should be a learning moment for him! Hope you feel better soon...I also have Hashi's and know how bad it can get!

MKat Explorer
And people here in the US think socialized medicine is a good thing? :huh:

Your TSH is 85?!?!? That is just plain malpractice! I am glad you are able to get what you need but the doctor telling you that small amounts of gluten are acceptable is totally ignorant and gave you life threateningly bad advice. Is he aware that thyroid meds need to be taken EVERYDAY?

I know for a fact that Levoxyl and Armour are gluten-free so I hope you can get either one on a continual basis. If not, you could move to the US but with the current administration trying to pass the same kind of health care as Canada has, it isn't boding well for Americans either! :o

Don't take no for an answer from the doctor....this should be a learning moment for him! Hope you feel better soon...I also have Hashi's and know how bad it can get!

I was on synthroid years ago, switched to armour because it was more "natural". For 6 years it worked great then all of a sudden I couldn't get my levels under control. The doc perscribed Levoxyl and I had a bad reaction to is. I begged to switch back to Syntrhoid and it got me stabalized again. Nothing feels worse than when your thyroid is really out of whack (well, there are worse things but you know what I mean!). All this to say, beware of generics...they many times have different ingredients that the real stuff - I've never reacted to medicine like this before - hives, stiff joints, swollen....yuck!!

  • 4 months later...
Tigercat17 Enthusiast

HI everyone,

I know this is an old post , but I wondered if anyone else felt that they were being glutened by their synthyriod.

I' pretty sure my new dose of thyroid has gluten in it. I was taking the 137 synthyiod for about a year. I've only been gluten free for three & a half months. I did have my Ab, IgA antibodies tested on Nov. 20th and they were down to a 3. And they were 157 in Sept. 09.

Now I just started taking a new dose (125 synthyroid) been on it for two weeks & I feel horrible. My stomach hurts ( pains on both sides of my abdomen) , very bloated, I feel like I can't eat, and my acid reflux is back. It's the same symptoms I had right before I got diagnosed with celiac. So, I called my doctors & they ordered another antibodies test on Dec. 16th. This time my Ab, IgA was 67! So, I'm definitely getting glutened! I haven't done anything differently. I don't go out to eat at all & I make everything fresh.

wowzer Community Regular

HI, That was how I felt a last year after the holidays and blamed that at first. I finally went on the generic version and it is gluten free. I have been doing fine on the generic version, so it may be worth checking into. Good Luck.

DownWithGluten Explorer

Oh Lord. Really? Somehow my mom found a way a while ago so that we were stocked up on synthroid for the past several years without needing refills so I've been fine. But mine are running low lately. Perhaps I should ask for the generic brand when I get it again. What is the generic brand? Thanks for this thread.

And like someone said...often times autoimmune and celiac/gluten intolerance go hand in hand. So you'd think the pharmaceutical company making Synthroid would wise up.

  • 2 weeks later...
Tigercat17 Enthusiast

I just wanted to let you all know I feel so much better since I've been off the synthriod 125. I feel really good! I've been off it for almost two weeks now & I feel so much better. I haven't changed anything else in in my diet, so I know I was definitely getting glutened by the synthriod. I am now able to eat, the bloating is gone & the pains in my stomach are going away. Even my feet were starting to ache & swell again, but that is also going away. I can't believe all of my symptoms came back again. I was losing weight & now I gained three pounds back since I've been off it. I only was on the synthriod 125 for two weeks before I figured it out. I was taking the 137 synthriod , but that didn't bother me. As soon as I took the 125 that same day, but later in the evening I had serve pains on my left side under my ribcage while I was eating dinner. I looked into everything I ate that day & everything was gluten free. I also have a gluten free kitchen, so I know there was no chance of CC. I also been eating all fresh meats, fruits, veggies & some rice. I was not eating anything processed. It was really driving me crazy trying to figure it out. I was being to think I had another disease or another intolerance but meanwhile it was that stupid synthriod the whole two weeks & I was just getting sicker & sicker. I was starting to waste away again.

When I called Abbott for the second time & the sale rep. told me they don't market this pill as gluten free. After my doctor seen that my antibodies raised again within a three week period, he did switch me to Levoxly & I know he really wanted me to be on synthriod since I don't have a thyroid & it's supposed to be more consistent. My thyroid was removed last year due to thyroid cancer. I'm seeing him today & can't wait to thank him for believing me and changing my medicine.

I just wanted everyone to be aware of this. I'm sure they're probably not using gluten as a filler, but I think their suppliers might have CC issues and that's why they can't say it's gluten free. I don't know why they tell us they survey their suppliers , but still can't guarantee it's gluten free. It's like they're contradicting themselves. I know I'll never take the synthyriod again. <_<

Gemini Experienced
I just wanted to let you all know I feel so much better since I've been off the syntyriod 125. I feel really good! I've been off it for almost two weeks now & I feel so much better. I haven't changed anything else in in my diet, so I know I was definitely getting glutened by the synthriod. I am now able to eat, the bloating is gone & the pains in my stomach are going away. Even my feet were starting to ache & swell again, but that is also going away. I can't believe all of my symptoms came back again. I was losing weight & now I gained three pounds back since I've been off it. I only was on the synthriod 125 for two weeks before I figured it out. I was taking the 137 synthriod , but that didn't bother me. As soon as I took the 125 that same day, but later in the evening I had serve pains on my left side under my ribcage while I was eating dinner. I looked into everything I ate that day & everything was gluten free. I also have a gluten free kitchen, so I know there was no chance of CC. I also been eating all fresh meats, fruits, veggies & some rice. I was not eating anything processed. It was really driving me crazy trying to figure it out. I was being to think I had another disease or another intolerance but meanwhile it was that stupid synthriod the whole two weeks & I was just getting sicker & sicker. I was starting to waste away again.

When I called Abbott for the second time & the sale rep. told me they don't market this pill as gluten free. After my doctor seen that my antibodies raised again within a three week period, he did switch me to Levoxly & I know he really wanted me to be on synthriod since I don't have a thyroid & it's supposed to be more consistent. My thyroid was removed last year due to thyroid cancer. I'm seeing him today & can't wait to thank him for believing me and changing my medicine.

I just wanted everyone to be aware of this. I'm sure they're probably not using gluten as a filler, but I think their suppliers might have CC issues and that's why they can't say it's gluten free. I don't know why they tell us they survey their suppliers , but still can't guarantee it's gluten free. It's like they're contradicting themselves. I know I'll never take the synthyriod again. <_<

How great is it that you were able to figure this out so quickly? ;) Synthroid is not gluten-free and there are other, better meds to take for thyroid disease which won't make a person sick. I am currently using a totally compounded T3/T4 so I KNOW it is gluten-free. I was using the Levoxyl for a long time but needed to supplement with T3 also, which Levoxyl doesn't contain. Other than that it worked very well for a long time.

Glad you feel better and have gotten to the root of your problems!

Tigercat17 Enthusiast
How great is it that you were able to figure this out so quickly? ;) Synthroid is not gluten-free and there are other, better meds to take for thyroid disease which won't make a person sick. I am currently using a totally compounded T3/T4 so I KNOW it is gluten-free. I was using the Levoxyl for a long time but needed to supplement with T3 also, which Levoxyl doesn't contain. Other than that it worked very well for a long time.

Glad you feel better and have gotten to the root of your problems!

Thanks Gemini!

It was a real struggle there for a while. It took me two & a half weeks to figure it out. Luckily I've been using a food diary & I document everything in it -food, how I feel , medicines & what I did for the day. So, I just went through it again & again until that was the only thing I seen that changed in that time period. I almost didn't want to believe it, but that's definitely what it was. Stupid synthroid! I was just starting to feel pretty good & then Wow! I really was starting to think I had another disease. I even went to the ER. Of course they didn't figure it out. I feel like I have to be my own doctor with this disease. The doctor's are just clueless....

By the way, do you feel better with the T3/T4? I was wondering if I needed this also, but it seems that I was okay with the T4, but then again I really wasn't okay since I was eating gluten for so long without knowing I had the celiac. How did you know you needed the T3?

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    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
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      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


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    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
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