# Anybody go gluten free for Hashi's and not have it work?



## Cristin (Apr 7, 2014)

Okay, I'm being totally lazy, but, c'mon, I'm Italian, I'm not made to be gluten free!

A couple weeks ago, my endo diagnosed me as being subclinically hyperthyroid with probable Hashimoto's. I go back in 3 months for a redo on my bloodwork and in six months for a repeat ultrasound for my nodules (multinodular goiter). The thing is, before my gynecologist found the nodules and sent me in, I felt fine. I've always been a little prone to anxiety, so I didn't notice I was overly revved up. The only thing I've noticed since then is that my heartbeat is fast.

So, this is my dilemma. I keep reading that going gluten free is good for (possibly) resolving Hashi's, but I really don't want to go gluten free since, in general, I feel fine. Good. Nothing at all that would be indicative of a gluten intolerance (no GI issues, no joint pain, no rashes, no fatigue, no nothing). So, what I'm really looking for is stories of people who went all out gluten free and didn't have any resolution of their Hashi's. (And, okay, if going gluten free did work for you, I'd be happy to hear from you, too.) 

Thanks!


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## joplin1975 (Jul 21, 2011)

It never did a thing for me. Granted, I tried it for about three months and at the time I didn't know I had Hashi's...I thought it would improve life with IBS. Maybe I should have done it longer? *shrug* But I had no difference in GI symptoms. None, zippo, nada. So I'm happily back to gluten.

If it works, awesome. If not, it's not like you'll get kicked out of the Punky Thyroid Club.


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## Cristin (Apr 7, 2014)

Thanks joplin1975. I guess I feel "intuitively" that, for me, this isn't a gluten thing (which doesn't necessarily mean I'm right, of course), so I'm being super resistant to it. If I thought it would work (for me), I'd definitely give it a go. For me, I really think it has a lot to do with my stress levels and the fact that I've always let my type A personality run a little too wild. I've been trying to reduce my stress, eat more animal fat (yes, I am probably the only person in America trying to do this!), and just REST. But since, like I said, the only real symptom I have (besides the physically enlarged thyroid) is the fast heartbeat. I'm happy to say I'm not having any palpitations anymore, though, so maybe that's a step in the right direction...


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## Cristin (Apr 7, 2014)

Cristin said:


> But since, like I said, the only real symptom I have (besides the physically enlarged thyroid) is the fast heartbeat.


I meant to say, that since, the only real symptom I have (besides the physically enlarged thyroid) is the fast heartbeat, it's hard to tell if any of what I'm doing is actually working.


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## Pili (Mar 29, 2014)

People in my family, including me, who cut gluten due to autoimmune disease and intolerance did have extreme GI symptoms that went away after cutting wheat. I probably would not go gluten free if, like you, I had no symptoms. My mother was able to reverse symptoms of RA after going gluten free, but she did not have RA symptoms for long before she cut out wheat, and she has a second autoimmune disease that is advanced.

I cut back because I knew that I was at least gluten intolerant. Gluten is just one environmental trigger of autoimmune disease, I believe it triggered my problem. I did not always have GI symptoms. I lived in Italy as a child and had no problem at that time. I wish doctors could pinpoint the triggers, inflammation is caused by so many things, stress included.

Years ago my mother's doctor put her on the CATS diet (a lifelong change) caffeine, alcohol, tobacco, and salt, she still drinks caffeinated drinks but not a lot, never drank much alcohol, cut out salt almost completely, and never smoked--she is deaf in her left ear from Ménière's disease, so when she first had symptoms she cut back on CATS, and salt seemed to aggravate her condition.

Good luck and maybe just eat more homemade pasta and whatnot? Ask your doctor what might have triggered your condition, I am curious to know how many of them think about possible triggers.


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## bigfoot (May 13, 2011)

I had a really hard time going GF. Like you, coming from an Italian family made it super tough. One doc mentioned it in passing, and of course, being stubborn, I conveniently blew it off as new-age bogus pseudoscience. My mistake, big time! Fast forward about a year and a half later, and my naturopath did a saliva test for gluten sensitivity, while my gastroenterologist did a blood test for Celiac. Turns out I was negative for Celiac, but not by much -- I had a scorching case of gluten sensitivity on the saliva test. Not only was my gluten problem likely driving some of my autoimmune issues, but my stomach issues magically improved probably 95% after going GF. It can take a long time to notice results, as gluten can stick around in your system for weeks / months. So cutting it out today may not bring any noticeable differences tomorrow. Took me about 3-4 weeks to notice anything.

Going GF isn't likely to be a cure-all, but if someone has a gluten issue, it should help calm things down a bit. Less inflammation = less autoimmune & antibody activity. And we need all the help we can get with Hashi's! If you suspect it, get tested first, before stopping gluten consumption. Otherwise the test(s) will not be accurate.

FYI, Trader Joe's makes a mean quinoa-brown rice spiral pasta. Holds up to cooking well, tastes good, and isn't super expensive.


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## Cristin (Apr 7, 2014)

Thanks, Pili and bigfoot! I'm so confused. The thing is, I want to do *everything* I can to try and take care of this, but I don't want to waste time on things that aren't related (especially, cuz, ya know, I love bread  ). If I'm not having any GI symptoms, how would I know if going GF was even working for me? Would it lower my heartrate, do you think? I should probably consult a naturopath, as you did, bigfoot. I'm just feeling kind of new to this all and sort of overwhelmed. It's so great to have found a forum where I can talk to people like you! I've looked into a lot of forums and none of them seemed like a good fit for me. This one seems just right.


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## ChellBell (Apr 4, 2014)

I've been gluten free for 4 months now and it hasn't done anything for me. I had no symptoms of celiac at all but figured I'd give it a try anyway. It was really hard at first because I am Italian too and I seriously love gluten lol but I've gotten used to it and now it's not bad at all. But like I said, I've felt absolutely no different and my antibodies, tsh, t4, etc are all the same so I'm probably going to start eating gluten again soon. It doesn't hurt to try though and I found that it was easier to go gluten free little by little. There are a lot of good gf options out there now too- FYI Barilla makes gf pasta and it tastes the same as regular boxed pasta (to me anyway), Amys gluten free pizza is ridiculously expensive but it's my favorite out of the ones I've tried, I like Udi's and Genius brand bread, bagels, etc, and of course risotto and polenta are gf and delicious


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## bigfoot (May 13, 2011)

Cristin said:


> If I'm not having any GI symptoms, how would I know if going GF was even working for me? Would it lower my heartrate, do you think? I should probably consult a naturopath, as you did, bigfoot. I'm just feeling kind of new to this all and sort of overwhelmed. It's so great to have found a forum where I can talk to people like you! I've looked into a lot of forums and none of them seemed like a good fit for me. This one seems just right.


More than welcome, and glad to have you here! I know sometimes reading through all the threads can be a little disheartening, and it's really hard to see people not feeling well -- but for all of us here, there are countless other people being treated that are doing great and just aren't likely to seek out a support forum. So, in my mind, the goal is getting everybody to the spot where they don't spend much time here, other than to help out and check in occasionally. 

I don't think going GF would really make much of a difference in your heart rate. Probably the biggest indicator would be any GI symptom(s) getting relief. Then for sure you could say it's working. Otherwise, the only way to know (short of how you feel daily) is to run thyroid and antibody labs, as ChellBell mentioned. My TPO Ab's used to be in the 300s, and recently they were hovering between 60-90. So I'd like to think that the combination of medication, along with nutrition and lifestyle, and maybe a little luck have helped calm things down a bit.

Consulting a naturopath is a good idea. They can be little expensive out of pocket, but your insurance might cover up to a certain amount a year for naturopath / chiropractic / acupuncture type services. Also, that should be an eligible expense for FSA accounts, so at least you get the tax break. One way to find knowledgeable docs is to not only look for unbiased reviews online, but you might try calling a local compounding pharmacy and asking if they know of any or recommend anyone. Often times naturopaths and more outside-the-box MDs will use compounding pharmacies for some of their patients. Every state is different, but here naturopaths have the ability to order labs, order tests (such as ultrasounds), perform typical in-office procedures and exams, write prescriptions, etc. So you might want to first see what the regulations allow for in your area, just to get an idea of what they can do.


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## LMSchune (May 30, 2013)

I have Hashi's and went GF back in October. I noticed a bit of an improvement with my enegy and BMs, but I was also taking medication at the time so can't say how much is attributable to the dietary change.

I did get my antibodies tested after 6+ months, and while my TPO dropped noticeably, my TgAB went up to above normal, whereas before it was borderline.

I'm still GF and more recently DF, but the temptation is there to give it up. Honestly, for most people I personally believe GF doesn't really do all that much, despite what the rabid Paleo supporters would have you believe. Unless you are actually 'allergic' aka celiac diagnosed, any changes may be minimal and not worth the hassle.


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## Cristin (Apr 7, 2014)

I guess I'm wondering about what I keep reading about gluten being so similar to thyroid...something (information overload!) that it causes your body to attack your thyroid when you eat gluten. Is this just a bunch of hogwash???? Honestly, I think I have zero percent problem with gluten, but just that little tidbit that keeps coming up over and over again is alarming me. (Granted, this is mostly among "natural" practitioners and not medical doctors). Could someone not have a problem with gluten, per se (I don't think I've ever used that phrase in everyday conversation!) and still have gluten be a problem with regards to a thyroid attack?

Grrrrrr...somebody get this girl some pizza!


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## joplin1975 (Jul 21, 2011)

It's more that if you are gluten sensitive, you'll have a lot of inflammatory processes going on. Since autoimmune thyroid issues can also cause inflammation, its good for gluten sensitive people to keep things "simmered down" by avoiding gluten.

I, personally, do not believe people without a gluten sensitivity but with a thyroid problem will significantly benefit from going gluten free, but again, it didn't do much for me and I'm no where near gluten free now, so I'm coming from a very biased perspective.


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## Cristin (Apr 7, 2014)

My bias is that I like pizza.


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## joplin1975 (Jul 21, 2011)

How ironic, me too! :tongue0013:


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## surge (Aug 15, 2012)

Lots of good thoughts here, already. I will weigh in and say I too fought the idea that I needed to avoid gluten. I would go 6 weeks at a time and then give up in the face of a slice of pizza or some pasta with fresh pesto. Or how about a beer? I digress! I gave myself a gluten challenge. I ate all the wheat I wanted for a really glorious August and my numbers went all to hell. TSH skyrocketed while T3 and T4 tanked. I don't even have my thyroid, so I don't think it's just about anti-bodies. I think it's more about the gut and absorption for me.

Because my numbers went wobbly, I stayed off. It's been 8 months. I can say starting around 6 months, I noticed a definite decrease in my hair falling out and now it's started regrowing. I've had longer stretches of my numbers being stable (they were changing every 6 weeks).

I should mention, I do have some new AI issues, in particular, potentially spondylaropathy, which is an arthritis that originates as AI issues in the intestines. In other words, I could just be having issues with my intestines and taking the break from wheat is helping that which is in turn helping the thyroid med absorption. So I don't share this as proof, but do share it to say that sometimes, it takes awhile to really see if it's helping or not. I've read that it can take 6months-1 year to see benefits, though many people see immediate changes, and many people never do. You could always try the gluten challenge route and see if indulging more than average has any discernible effects.

By the way, I did test negative for celiacs and gluten sensitivity.


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## bigfoot (May 13, 2011)

Interesting to hear you don't have a thyroid and still had the numbers tank -- like you mentioned, perhaps it's due to the GI tract and medication absorption. I know "leaky gut" is one of the latest buzzwords, but I'm sure there is some truth to it. In fact, I heard of a relative's acquaintance whose doctor actually diagnosed them with leaky gut, amongst other things.


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## surge (Aug 15, 2012)

I'm a slow convert to the auto-immune= all-about-the-gut theory Also, the liver. Oh my god, the liver. If I'm drinking dandelion root, I do a lot better-- I drink a powdered greens drink once a day and/or a tea. If I do this everyday, I feel pretty good. If I forget for a few days, I start swelling and everything starts slowing down. So I'm a big believer in supporting liver function while also getting the gut in a good place-- a probiotic, no wheat, limit dairy and swill the coconut oil. It's taken a lot of tinkering but this is the best support I've found for me. Sadly for OP, I'm not the person who did great while still eating wheat.


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## FlowerChild (Aug 15, 2014)

I have Hashimotos . Diagnosed 2 years ago.
I actually was mostly gluten free before being diagnosed.. Guess I felt the sensitivity before hand. My issues with digestion go beyond gluten sensitivity .., I was having a reaction to histamine as well , a year after being diagnosed . So, low histamine and no gluten. Taking Betaine with pepsin , DAO type enzymes ... That is what helps the digestion/ gluten issues for me. So going gluten free didn't resolve the issues completely for me.


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## Swimmer (Sep 12, 2013)

So I've been on Hashi's 411, and the gluten issue isn't just gluten, it's gluten, gliadin, all grains, all cross reactive grains, all soy, all dairy and any substance you're known to have a problem with. I've been watching, and person after person after person have been able to make progress leaps and bounds -- while not everyone -- but numerous. I guess its so strict that we're talking - "NO" to gluten free oats, no to rice, no to hidden wheats, msg, "natural flavorings" often contain hidden stuff - basically eating the "AIP" or autoimmune protocol (or autoimmune paleo) which I personally don't think that hashi's people should go solidly low-carb. BUT. I've been watching and person after person after person has a success story there -- not everyone -- but it gets exciting. It's an elimination diet (not a forever diet) and then you add things back in to see what effects you.

I am hoping to go 100% AIP on September 1st for six months, then slowly reintroduce foods. I have my labs from a couple of weeks ago, and it will be fasinating to see how AIP I can get, and what my labs will look like in February. Note that I'm not somebody with "ANY" known gut issues. I am a healthy girl. Hashimoto's hit. So I guess I'll be one of our test subjects.

Giving up my strongholds will be hard. My most difficult things to give up are coffee (even decaf), tea, dairy (I think goat milk is okay)...

Well I guess I'll have to give you an update in February 2015 and we'll see if I made it, what percentage and what my labs are. This will be so interesting.


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## CA-Lynn (Apr 29, 2010)

I think it's all baloney unless you are truly, truly, truly gluten sensitive, and very few people are [even in a population of autoimmune diseases].

I belong to multiple autoimmune forums for RA, PsA, LGMD, AS, and everyone thinks there is a quick fix using a gluten free diet. Sadly the infinite majority come back and report there was no change.....but that yes, they felt better for eating a healthier diet.......but not THAT much better.


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## Amanda22 (Aug 27, 2010)

I was diagnosed Hypo/Hashis in 2001. I was diagnosed with Celiacs in 2003. Has it helped my thyroid......not sure


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## Andros (Aug 26, 2009)

Not sure it helps the thyroid per se but if you have wheat gluten intolerance (allergy), it can trigger the autoimmune system which in turn triggers antibodies and puts the body into a flare. That could possibly trigger inflammation of the thyroid gland as well if the gland is not healthy.

Humble opinion.


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## CA-Lynn (Apr 29, 2010)

I belong to multiple RA forums and a lot of people have tried going gluten free and discovered it was a waste of time. If you're not one of the very, very, very few who is truly gluten-sensitive, going gluten-free isn't going to do a thing for you.


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## ifthespiritmovesme (Jan 8, 2014)

I tested negative (blood draw) for celiac, but tried GF anyway. It has resulted in a dramatic improvement in many of my issues. Chronic pain and muscle cramping, bone pain, bloating, energy level, stamina, year-round "allergies", finally feeling rested after sleeping. When I ingest gluten, my symptoms ALL return within hours.

Some people may not have a problem with gluten, but it is absolutely a problem for me, despite what blood tests say. You have to listen to your own body. My suggestion would be to try it for 30 days and keep a log of how you feel. I noticed a dramatic difference in 10 days of GF.


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