Hashimoto's and teh Evil Glutenz

Crafty_camper123
Crafty_camper123 Posts: 1,440 Member
edited December 19 in Health and Weight Loss
Okay, so I was just recently diagnosed with Hashimoto's Thyroiditis. It's in the early stages as of right now. TSH, T3 and T4 were all within normal range, but TPO Antibodies were off the charts. So, I've been instructed to support my thyroid health through selenium supplementation for right now. (No synthetic thyroid yet.)

To educate myself a bit more on this condition, I have been also consulting with Dr. Google. In my research I have been finding an overwhelming number of article's suggesting I cut things like gluten, dairy and soy from my diet to support my immune health, with a heavy focus on gluten. I'm not sure which of these blogs & articles are reputable though. So is this a bunch of fear mongering hogwash? Or is there something to this? Has anyone on here with Hashi's tried going gluten free? Or eliminating other things from your diet? Did you notice a difference in how you felt?

To note, I did try gluten free almost a year ago due to some gastrointestinal distress I was having. I lasted 3 weeks, and it did not help the symptoms I was having. Nor was there any change to energy levels, asthma, or overall well being. I really have no intents on getting rid of gluten out of my diet, unless it becomes absolutely necessary. I love bread & pasta way too much. And, the GF versions just aren't the same. But, if it helps to slow down the progression of the disease, it's something worth looking into. So I just wanted to hear from people to see what their experience was. Thoughts?

Replies

  • Crafty_camper123
    Crafty_camper123 Posts: 1,440 Member
    FL_Hiker wrote: »
    Don’t consult Dr Google, go see a real endocrinologist.

    Sage advice. I really need to knock that off. (It's a really bad habit of mine.) I could look up cold symptoms and have it tell me I have butt cancer. :p So I do try to weed out the bull crap. Are there any reputable websites you might be able to point me in the direction of for some reading? I just really like to do a bit of research in effort to stay informed.

    So far, my current doc seems pretty knowledgeable with thyroid conditions. From what I understand, Hashi's can fluctuate between hypo and hyper during it's early stages, so meds can be hard to regulate. (Dr. IRL advice, not Dr. Google advice). I have absolutely no desire to cut out gluten, especially if it will make little difference to my overall health and well being. I did notice a marked difference in my energy levels while taking selenium, though.
  • maureenkhilde
    maureenkhilde Posts: 849 Member
    I second seeing a specialist the endocrinlogist. I have a thyroid problem, and my specialist really does know much more than the primary. I see the endo mostly for my T2D.

    I find both WedMD, and Mayo have solid information on them. And my endo has said looking up info there is fine. I read some info of WebMD and asked some questions, so they asked where I had read about it. Not sure if they are available everywhere or just in US.
  • GottaBurnEmAll
    GottaBurnEmAll Posts: 7,722 Member
    edited December 2018
    collectingblues wrote: »
    It's a bunch of fear mongering hogwash.

    There is a significant body of literature about undiagnosed Celiac and its effects on Hashimoto's -- largely in that the person with Hashimoto's who also has undiagnosed Celiac or unmanaged Celiac will need larger than expected doses of T4 replacement -- but there is little to no literature about *general* gluten-free nutrition and its effect on thyroid function. There's just a bunch of fearmongering hogwash anecdata because OMG gluten is deh DEBIL.

    I'm NCGS/seronegative Celiac, and have seen absolutely no changes in how I feel on my current dose of thyroxine since going GF in August. I don't feel hyper -- which is what you'd expect if my dead as a doorknob thyroid were suddenly more responsive to the previous dose -- and I don't feel more hypo. I am absolutely the same.

    If it weren't for having better GI function while GF, I wouldn't do it either. Being GF is a PITA -- especially when layered with being type 1 diabetic (I got the autoimmune collectors' pack) -- and having to watch for cross contamination in absolutely everything I eat is annoying AF.

    There is no reason for you to go GF unless you *want* to go GF.

    ^This. And I say this as a person with celiac disease.

    And you don't necessarily need to see an endo off the bat to manage Hashi's if you have a good practitioner. I managed mine for years well with an Advanced Care Nurse Practitioner who treated mine by symptoms not numbers, but she referred me to an endo when we hit a patch where she kept titrating my dosage up and my TSH kept rising. At that point, things were too confounding and she didn't feel comfortable handling my case anymore.
  • Crafty_camper123
    Crafty_camper123 Posts: 1,440 Member
    GottaBurnEmAll wrote: »
    collectingblues wrote: »
    It's a bunch of fear mongering hogwash.

    There is a significant body of literature about undiagnosed Celiac and its effects on Hashimoto's -- largely in that the person with Hashimoto's who also has undiagnosed Celiac or unmanaged Celiac will need larger than expected doses of T4 replacement -- but there is little to no literature about *general* gluten-free nutrition and its effect on thyroid function. There's just a bunch of fearmongering hogwash anecdata because OMG gluten is deh DEBIL.

    I'm NCGS/seronegative Celiac, and have seen absolutely no changes in how I feel on my current dose of thyroxine since going GF in August. I don't feel hyper -- which is what you'd expect if my dead as a doorknob thyroid were suddenly more responsive to the previous dose -- and I don't feel more hypo. I am absolutely the same.

    If it weren't for having better GI function while GF, I wouldn't do it either. Being GF is a PITA -- especially when layered with being type 1 diabetic (I got the autoimmune collectors' pack) -- and having to watch for cross contamination in absolutely everything I eat is annoying AF.

    There is no reason for you to go GF unless you *want* to go GF.

    ^This. And I say this as a person with celiac disease.

    And you don't necessarily need to see an endo off the bat to manage Hashi's if you have a good practitioner. I managed mine for years well with an Advanced Care Nurse Practitioner who treated mine by symptoms not numbers, but she referred me to an endo when we hit a patch where she kept titrating my dosage up and my TSH kept rising. At that point, things were too confounding and she didn't feel comfortable handling my case anymore.

    Thanks for the responses everyone! ^^^ This makes sense. I'm seeing a Nurse Practitioner as well (Actually I think she got her MD, and still runs her NP clinic, but that's neither here not there.) She seems pretty knowledgable so far. But if it gets to a point where I am having an increase in a severity or frequency of symptoms and she's unwilling to treat, I'll move on to a real endo.

    It seems that there appears to be a connection (from what I've read) where hypothyroid, celiac, and other autoimmune disorders tend to run together. But as far as any type of peer reviewed studies, I could not find anything beyond correlation. The only thing I can find is that having one autoimmune disorder makes it more likely you could have another. I have a feeling that a lot of these bloggers seem to be taking that info and running with a "better safe then sorry" approach.
  • kshama2001
    kshama2001 Posts: 28,052 Member
    Crafty_camper123 wrote: »
    FL_Hiker wrote: »
    Don’t consult Dr Google, go see a real endocrinologist.

    Sage advice. I really need to knock that off. (It's a really bad habit of mine.) I could look up cold symptoms and have it tell me I have butt cancer. :p So I do try to weed out the bull crap. Are there any reputable websites you might be able to point me in the direction of for some reading? I just really like to do a bit of research in effort to stay informed.

    So far, my current doc seems pretty knowledgeable with thyroid conditions. From what I understand, Hashi's can fluctuate between hypo and hyper during it's early stages, so meds can be hard to regulate. (Dr. IRL advice, not Dr. Google advice). I have absolutely no desire to cut out gluten, especially if it will make little difference to my overall health and well being. I did notice a marked difference in my energy levels while taking selenium, though.

    Well, I do like to be able to have an informed conversation with medical providers, so I google.

    My GYN told me she wouldn't prescribe a certain medication because it was bad for my heart, and when I googled I learned practitioners were concerned that it might cause problems in smokers, which I am not, and there were no studies that bore this out anyway. So I discussed it with my cardiologist who said my GYN was wrong. But I was able to have a better convo with him having done that initial reading.

    Because I'm with the VA, and the medication is not in their formulary, the whole process of getting the first prescription took about 6 months, but it was worth jumping through the hoops.

    Also, my previous GYN recommended a procedure that my second GYN concurred with my interpretation of Wikipedia that there were too many adverse effects for me to do it - she'd seen patients come to her with these adverse effects with no warning from those who performed the procedure that this could happen.
  • CSARdiver
    CSARdiver Posts: 6,252 Member
    collectingblues wrote: »
    It's a bunch of fear mongering hogwash.

    There is a significant body of literature about undiagnosed Celiac and its effects on Hashimoto's -- largely in that the person with Hashimoto's who also has undiagnosed Celiac or unmanaged Celiac will need larger than expected doses of T4 replacement -- but there is little to no literature about *general* gluten-free nutrition and its effect on thyroid function. There's just a bunch of fearmongering hogwash anecdata because OMG gluten is deh DEBIL.

    I'm NCGS/seronegative Celiac, and have seen absolutely no changes in how I feel on my current dose of thyroxine since going GF in August. I don't feel hyper -- which is what you'd expect if my dead as a doorknob thyroid were suddenly more responsive to the previous dose -- and I don't feel more hypo. I am absolutely the same.

    If it weren't for having better GI function while GF, I wouldn't do it either. Being GF is a PITA -- especially when layered with being type 1 diabetic (I got the autoimmune collectors' pack) -- and having to watch for cross contamination in absolutely everything I eat is annoying AF.

    There is no reason for you to go GF unless you *want* to go GF.

    All of this!

    There is a strong correlation, but little to no causation.

    How you "feel" is largely dependent upon what your thyroid activity was during your developmental years, so this now "feels" normal to you. While there is an established optimal range this is fairly large and often not symptomatic.
  • Crafty_camper123
    Crafty_camper123 Posts: 1,440 Member
    kshama2001 wrote: »
    Crafty_camper123 wrote: »
    FL_Hiker wrote: »
    Don’t consult Dr Google, go see a real endocrinologist.

    Sage advice. I really need to knock that off. (It's a really bad habit of mine.) I could look up cold symptoms and have it tell me I have butt cancer. :p So I do try to weed out the bull crap. Are there any reputable websites you might be able to point me in the direction of for some reading? I just really like to do a bit of research in effort to stay informed.

    So far, my current doc seems pretty knowledgeable with thyroid conditions. From what I understand, Hashi's can fluctuate between hypo and hyper during it's early stages, so meds can be hard to regulate. (Dr. IRL advice, not Dr. Google advice). I have absolutely no desire to cut out gluten, especially if it will make little difference to my overall health and well being. I did notice a marked difference in my energy levels while taking selenium, though.

    Well, I do like to be able to have an informed conversation with medical providers, so I google.

    My GYN told me she wouldn't prescribe a certain medication because it was bad for my heart, and when I googled I learned practitioners were concerned that it might cause problems in smokers, which I am not, and there were no studies that bore this out anyway. So I discussed it with my cardiologist who said my GYN was wrong. But I was able to have a better convo with him having done that initial reading.

    Because I'm with the VA, and the medication is not in their formulary, the whole process of getting the first prescription took about 6 months, but it was worth jumping through the hoops.

    Also, my previous GYN recommended a procedure that my second GYN concurred with my interpretation of Wikipedia that there were too many adverse effects for me to do it - she'd seen patients come to her with these adverse effects with no warning from those who performed the procedure that this could happen.

    This is exactly why I cant stop it, lol. My googling has led to plenty of informed discussions with my doctor. I feel like it has led my in the right direction quite a few times. Most recently being the thyroid thing. I've been conviced for years now it's on it's way out the door. If I hadn't looked up hypothyroid symptoms, and brought it up to my doctor, I would have just assumed my symptoms were just a part of getting older (heck I did assume that for a while!). Combine my googling, and a strong family history of thyroid problems I was able to get my doc to confirm my suspisions. (also health fair test results). Not to say that eventually I wouldn't have arrived here (hashi's diagnossis), but I feel like it helped me guide her in the right direction a bit faster.
  • newjeans150
    newjeans150 Posts: 8 Member
    Crafty_camper...Hashimoto's is a complex issue. I will say that your looking to Dr. Gogle is not a bad thing in itself, if you can find the legitimate sources of info. You are smart to be reading about your condition, then bringing your questions to your Dr.There are some fantastic functional medicine Dr.s out there, where you can learn so much from. Dr. Isabella Wentz(actualy a pharmacist) has a fabulous website and is a wealth of information, as she herself has gone through Hashi. As far as gluten is concerned, to give it up helps some people.It is a very inflammatory substance, just like dairy......and it is this inflammation that can wreak havok on our bodies, in so many different ways, an unbelievable amount of ways.So don't believe that what you read and hear is fear mongering hogwash. You need to see how YOUR body does without it, which may be different than someone elses body (imagine that!). It can actually take a long time to get the gluten and it's effects out of your body...sometimes more than a few months. Find a Dr. you are comfortable with, who listens to you and explains why you should do things a certain way....not just a typical because I said so and I am the Dr. mentality...way to many of those out there. Give the gluten free route a chance, but be dedicated to it, and look to your body for changes. As I said, you might be surprised after giving it more time. I was, but that is ME. Keep on reading...not a bad thing at all because it will raise questions for you to ask. Good luck.
  • SCoil123
    SCoil123 Posts: 2,111 Member
    I have Hashimoto’s and I am GF but I’m GF because of a wheat germ allergy. Eating that way makes avoiding the allergy easier even though technically I can eat the other grains. It didn’t change my thyroid symptoms at all when my eating changed but I did finally get rid of the hives that had been recurring for a decade.
  • KatLynnB07
    KatLynnB07 Posts: 3 Member
    I can only tell you from my own experience, as the other responders are correct in the fact that there is a dearth of research on the topic. However, for me, going GF and dairy free (at the recommendation of my MD) has made a huge difference in my TPO antibodies. They have decreased to 1/3 of what they were when I was first diagnosed. I did not notice immediate relief of symptoms, but as my antibodies decreased, so have my symptoms. Again, this is only my personal experience - it would be worth continuing to have discussions about.
  • Remoth
    Remoth Posts: 117 Member
    When doing your own research, there are things you can do to help clear out some of the non-trustworthy results.

    If it's not from a medical hospital/university/or government website, take it with a grain of salt.

    If it's from a website that is chalked full of other articles and ads linking to fad diets/supplements/really gimmicky stuff and has more ad space than article space or claims to have health benefits as long as your arm, take it with a massive grain of salt.

    If it is a blog with zero sources, run away as fast as you can!

    Critical thinking skills with a skeptical outlook are more important than ever in the age of false information that we live in. Dont believe everything you read. Make sure the articles you are going to trust have reputable sources, usually links to scientific studies, not links to other blogs...

    If all of this fails... make sure you speak to your doctor. I do understand that there are some bad doctors out there (my local ones are terrible, dont care about anyone), but that does not mean doctors shouldnt be trusted. Second and third opinions are great and can separate out the quacks from the legitimate. Bad doctors give all of the good doctors a bad name, and it's really doing society a disservice when people feel they cant trust our medical professionals. They are still our best option for medical advice and treatment.
  • paperpudding
    paperpudding Posts: 9,304 Member
    My own n= 1

    Am on thyroxine for last 3 years since having thyroid tumour removed.

    I did not change my diet and I eat plenty of gluten contains products, just like I did before. And dairy products, just like before.

    Cannot comment on soy - did not consume it before or after.

    Have seen 2 specialists, as well as several GP's in practice I attend. Absolutely zero of them has ever suggested dietary changes.
  • pinaycoco
    pinaycoco Posts: 59 Member
    Hello - I have Hashimoto's and have seen three endocrinologists in less than a year now. One prescribed an "AIP diet" but another dismissed it as useless. I should add that all three strongly advised me to limit all sugar, refined carbs and all processed food. I follow a vegan diet with lots of fresh vegetables and fruit. I very occasionally eat fish or an egg although I'm not crazy about either. I'm also picky when it comes to things like bread and chocolate: only eat freshly baked sourdough bread or a square if high quality 70% dark chocolate. No milk products, meat or poultry. Ever. I guess you have to experiment a bit but this has worked for me. Exercising every day has also made a huge difference to my mental and physical health. So I would be interested in hearing from everyone how they are finding motivation to exercise. I lost 10kg last year but gained 4kg back. So I want to retun to my normal weight. Thank you, and get better soon!
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