Thursday, July 16, 2015

Gluten Doesn't Matter, and other Hashimotos Woes

I've been 100% gluten free since February (coming up on six months now) and today I went to see my endocrinologist for a follow up visit. He is the one who originally suggested that I should go gluten free for my thyroid (and also asked me to do an elimination diet, which is how I got started on AIP last year). I was very interested to see how the diet change and medication may have affected my thyroid numbers; everything I have read online indicated that you can actually see a reduction in the TPO (thyroid antibodies) in the blood work if gluten is eliminated. I really wanted to see if my numbers had improved.

Well, what a letdown. First, the doctor did not order the TPO test in the pre-visit bloodwork. When I realized this, I called and asked his nurse request it. He still didn't order the test. So I figured I'd ask him about it in person at my appointment. When I did, he said "TPO doesn't matter. You have the antibodies, you'll always have them. The number will fluctuate but you will always have Hashimotos." Then he told me that all my other thyroid tests came back almost exactly the same as they did last year before starting medication. We talked about how I felt better at first, but gradually I've had symptoms return: tiredness, difficulty losing weight, lack of energy, etc. He said the thyroid medication raised my levels at first but then my thyroid compensated by making less hormone, so now my levels are the same as they used to be. He didn't want to increase the dose again, because my thyroid would again compensate by making less hormone. He said I could just quit taking the medication now, since I am no longer seeing benefits, and my thyroid should start making more hormone again. As long as my symptoms don't get worse, I can stay off the Synthroid... and, as he said, wait for the inevitable failing of my thyroid due to Hashimotos. How encouraging.

So then I mentioned that I had taken his advice and have been gluten free for almost six months straight. He asked me how I felt... if my tiredness, lack of energy, weight loss difficulties... had improved by going gluten free. I told him I didn't think so. And he said, "then there's really no reason for you to continue avoiding gluten. You've given it a good trial. I'd say it's pretty definitive that it's not helping." And he said I could go back to eating gluten.

I don't know how I feel about that. I have read so much about Hashimoto's and gluten, and that's why I wanted to see the TPO numbers.... to see if being gluten free had helped the autoimmune disease. Without that feedback, I feel lost. I talked to him about what I have read, and he said not to believe all the hype on the Internet about Hashimoto's. Told me there's no cure, nothing that can be done, and I'll always have it and my thyroid will eventually fail.

I asked if he had any idea what could be causing my symptoms. He mentioned female hormones and pre-menopause, but said that it could be one of my blood pressure meds making me tired. He advised me to work with my primary doctor to get off one of those medications and perhaps increase the other one, and see if that helps. I told him I am eating an average of about 1150 calories a day, lots of protein and not a lot of carbs. He told me 1) it wouldn't hurt to cut back to 1000 calories a day (but not lower), and 2) a half pound a week is a perfectly acceptable rate of loss.

Well, I dunno. Seems awfully slow to me, especially when, if I take a month to lose 2 pounds, and then eat a box of gluten free cookies over a weekend, I regain both pounds in two days. But that's all he had for me. Now I am really at a loss about the gluten thing. Maybe it IS pointless. I don't want to eat any gluten unless I feel sure though... and I wish I could get those TPO numbers to help me decide.

In other news, my eating has been fine and on target this week. I spent four days in pain from kidney stones (NO FUN to pass, omg) but am much better now. My activity level plummeted for those 4 days because every move I made felt like I was being stabbed in the back. But now that I've passed 3 stones, I am feeling much better and ready to get back to normal activity.


Anonymous said...

Your endocrinologist sounds like he's giving good advice. TPO can fluctuate, and having a repeat level at this stage when you don't feel symptomatically improved is really worthless.

As for gluten, didn't you say you felt better off it? Maybe I'm mixing up your posts, but I thought you felt less inflammed/groggy when you were off gluten. Or maybe that was wheat? Anyways if you don't feel any better off gluten why not add a bit back in? Will open up your food choices. And staying gluten-free isn't any better for your weight anyways! Gluten free cookies are still cookies ;). Good luck.

Anonymous said...

That sounds discouraging. But, I would find another doctor. I've been through similar with Hashimoto's. My suggestion is to find a functional medicine doctor who will look at everything. There is drug call low dose naltrexone that worked great for me.

CatherineMarie said...

For me and my cousin, going gluten-free really seemed to help us. That being said, there is a lot of sugar and carbs in most gluten-free prepared baked goods (they use mostly tapioca flour or rice flour). Maybe try and stay off it for another six months? My cousin took a while for it to kick in with her results. I would definitely go back to your primary care doctor and talk to him/her about your other meds. I don't think there is a one-size fits all answer, unfortunately. Maybe when/if you cycle gluten back in, start going for the whole grains, or maybe go for rye and barley first?

And maybe go talk to a nutritionist? Most doctors have a very basic understanding of nutrition. I do think 1/2 pound a week is a great rate of loss. One thing I do with g-f cookies has been to store them in the freezer after I open the package. That way I can have one, but the box is out of sight and they aren't getting stale. I made some good gf zucchini cookies the other day. Here's the link.

Don't limit too much, I think that's when you get discouraged... *hugs*

Susan Calderon said...

I am sorry to hear that discouraging
report from that doctor. Is there any
chance you can get a different doctor?
Also I know some lab tests we the public
are able to order ourselves but insurance
doesn't help in that scenario.
Gluten isn't good for us period. I went
gluten free two years ago this month and
even if it didn't make me sick I still wouldn't
start eating things with it again.
I wish you luck in deciding what you do for your

Anonymous said...

I really don't know much about thyroid issues and Hashimotos (so take it with a grain of salt), but your doctor's attitude seems very... blase, about something that is very critical to you and your health/feeling well. It feels wrong to me that he would prescribe you something knowing that it would just fail and you'd have to stop taking it anyways. And I'm fairly certain that gluten-free isn't bad for you, whereas the typical SAD diet of lots of refined carbs is definitely NOT good for anyone. Sure, you might not notice a difference, but there might be a chemical difference in your body that is happening that is better than it was before. Again, it seems irresponsible to me that your doctor would say, "Eh, it's okay to go back to eating stuff that you know makes you feel bad."

Maybe it would be worthwhile to get a second opinion, if you haven't already?

What discouraging news. :(


Anonymous said...

Wow. Sounds like you need a new doctor!!! I don't know where you live, but here in Seattle, we have so many good ones and plenty uninspiring ones. It seems like you could find someone a little more hopeful and less "i dunno"! I have a great ND here who I take the info to my MD also fab, and I feel like i get all sides. Ugh. Also, gluten doesn't just affect the thyroid, as you know, and an auto-immune affects ALL systems. In addition, i'm not sure you could really say you had 6 months straight no gluten, when we did it for the first time, we accidentally had gluten all the time, NON GF oats, soy sauce, malt ingredients, etc. I know on the blog there were a couple slips in the last 6 months. So we didn't think it helped, THEN we tried it 100% No slips, it took about 6 months of this type of austerity to see a huge difference for my hubs auto immune. I just want to encourage you to not give up. There are so many good docs out there who will not say, oh well, you have female hormones (WTF!?) and actually give some good advice.

Anonymous said...

Well. Yet another reason to be dissatisfied with doctors, but before I go there, you may need to take a closer look at your eating before you decide that gluten free, lots of protein and low carb didn't work.

As far as being 100% gluten free for six months. I'm not sure that you were. A lot of what you listed in your food intake might have had some gluten in it. For instance, tortilla chips often have gluten. So does pudding, gravy, most processed food (Look for barley in the ingredients list). Granted you haven't eaten gluten-heavy food, but you may have gotten more gluten than you think.

Secondly, the sugar issue. You wee eating enough sugar during that six months to have withdrawal symptoms when you reduced, but did not eliminate it, a couple of weeks ago. You have said in the past that sugr is problematic for you, so it may be a player here.

And, finally, you probably need to bump up that protein number to call it "lots of protein". With the kidney stones (OUCH), however, you'll want to research what kind of protein is best for you and how much.

Hmmm. That sounds a lot pickier and critical than I mean it to be. It's just that if your assessing the efficacy of a food regimen, you need to be clear on what exactly you were eating...or your assessment will provide false faindings.

However. After having picked at your description of what you've eaten, the bottom line is that as far as not feeling better even with the improvements you've made--> Your thyroid numbers say that you ought to be tired. Even if you ate a totally clean diet--no gluten, no sugar, 90gr protein a day, under 100 gr of carb a day, you might feel better than you do now, but those thyroid numbers say what you eat is not the primary cause of how you feel. It's the thyroid.

And, yes, that is discouraging.

Frankly, it seems as tho this MD has just shrugged his shoulders and decided that it's okay for you to just drag along. Nothing more to do...the Synthroid didn't work.

I might look for an endo guy who has more tools in his tool box. You deserve better than what you're getting. by the way, I have never--I mean never--had an MD refuse a blood test when I've specifically asked for it. It's not invasive, it's related to your diagnosis so the insurance will pay. He dismissed your concerns without legitimate reason...IMHO.

I'm so sorry that MD visit was as discouraging as it was. Anyone would have been let down by it, it's not just you.


Kristi said...

Call your regular doctor, tell the. You want to make an appointment to go over results from 1st doctor but you would like to have some blood tests done first, including the one you want. Be specific. They work for you and it is your body. If it makes you understand more, it should be done. If they balk at the request, it's time to find another doctor.

Anonymous said...

Sounds like maybe you should get a second opinion? It's a shame to leave the dr. feeling hopeless and confused. Also 1000 calories is extremely low!

Good luck -


Karen said...

Super simple ideas, 2 things.

1. Do you feel better eating gluten? (less pain, less binge eating) Yes or no

2. Is eating a box of gluten free cookies binge eating? Yes or no

Implementing a gluten or grain free food template takes a lot of work, but can help to reduce inflammation.

Admitting binge eating is easy, but the long term fix ( abstaining, support groups, maintaining food sobriety) is a lot of work, but does help with weight loss and long term maintenance.

Actually for me, it is almost one stop shopping. What puts my binge eating into remission and brings food sobriety also supports my Hashimoto's (diagnosed with 1:80 anti-microsomal antibodies in 1997).

Simple concepts, impossible to implement without private, off the blog support- IMO. Yes, yes, one can continue to eat gluten and binge eat. Your lifespan may not even be shortened, but medical costs and additional auto immune disease risks = sky high. Also the mental and phyical pain costs are also beyond what I could tolerate. It's the quality of my life and being able to do physical things and spending money on vacations and not sick care that motivates me.

Change "I dunno" to "I will take action, no matter what". I do think you know. I think you could simply draw a line on one sheet of paper and write costs vs benefits. Then slowly or quickly make the changes to the benefits side. With help. privately.

Karin said...

It's frustrating when you don't get results you'd hoped for and the doctor doesn't follow through on what you've requested. I totally get that. One thing I will say is that most doctors, while knowledgable about many many things, are generally not too well versed on true nutrition, which is really really sad. I think the tide is changing, I think more docs are realizing that food truly can be medicine, but overall, not so much. I know a few folks with Hashimotos and the thing that has helped the most is staying away from gluten, yes, but also most processed foods. No fake sugars, no Starbucks "drinks", no fake cheeses, nothing but real food. The thing i've noticed in your diet is that you have quite a bit of processed stuff in it. Meat, veg, fruit, seeds/nuts. Real food. Throw some real dairy in there if you want it, but honestly, get rid of the processed stuff and I think you'll feel better. It's not rocket science...but it isn't easy in this world of processed foods that are easy and convenient. It probably wasn't that difficult 50 years ago, but I get that "easy" food is tempting. In this day and age it's a commitment to make real food, or to choose an apple vs. a GF cracker, or to just have water instead of a fake sweetened drink....but, it's a mindset that you have to have to be healthy. I wish you luck, I hope you find the answers you're looking for, but until then....just stop eating all the processed foods. It may not be the answer to everything, but it certainly won't hurt.

Jebbica said...

That's a bummer! My doctor has put me on a gluten-free diet as well to see if it helps with certain...digestion issues. So far I'm about 80% gluten free and it has helped with that, as well as weight loss because instead of buying gluten-free bread or whatever I've just been using lettuce wraps and stuff like that. I think my readers would be really interested in reading your perspective of the whole gluten-free thing...I would love it if you would stop by my link party, Food and Fitness Friday, sometime! I have it every Friday and other bloggers share their own health and fitness posts and recipes.

Don't give up; I love following your journey!

Lyn said...

Thank you for the thoughts. I won't respond to every one individually but I do think it is time to get a second opinion or some kind of a different doctor... functional medicine, or something. I'll be looking.

Also, no, I do not binge. I would think it is impossible to binge while eating 1150 calories a day but I guess it could be done. No, I am not eating gluten free cookies either, haven't had any in the house this month, but they are not off limits either. I'd allow myself one (*one*) if they were offered and fit my calories and carbs for the day. I avoid them because they are not "worth it" for the amount of carbs they have. However like I said, I know it would only take one weekend of higher carb to regain 2 pounds that took a month to lose.

And most importantly, I have been 100% gluten free since February... no slips, no soy sauce, no barley, nothing I am not SURE is gluten free. The brand of tortilla chips I use says "gluten free" on them. Everything I eat, I read labels. If it even says "processed in a facility on equipment that also processes wheat," I don't eat it. The only way I could have been exposed to gluten over the last 6 months is if some label that says "gluten free" on it is a lie, (which could kill someone with a gluten allergy, so I tend to trust that) or if someone else prepared their salad on a cutting board that they had sliced bread on. Even at potlucks, I will not eat anything that has a remote chance of having a gluten ingredient. So I am confident in my gluten-freeness. I take it very seriously and really wanted to see if it would help my autoimmune issues.

I am not going to eat any gluten until I see another doctor and get more information.

Rachel Block Smith said...

I'd seek another doctor, too. If you can control the antibodies, the attack on your thyroid will be lessened. Gluten free has DEFINITELY helped me and my daughter who both have Hashimoto's. Do you take any supplements? Very low vitamin D and B12 are quite common with Hashi's - she and I both take high doses of those plus vitamin C, magnesium, and selenium. I'm convinced it was the mega doses of supplements that have helped with my symptoms-despite-good-labs more than my dietary changes. Also, I have to eat at least 1500 calories a day to lose. When I've dropped lower, my metabolism crashed and I couldn't lose. Just my two cents for how I've dealt with Hashi's for 20 years now.

Lyn said...


I take D3, sublingual B12, prescription B9, fish oil, and several other antiinflammatory supplements and vitamins. My metabolic testing results, and my own calorie counting trials, have shown that I gain on 1500 or more calories a day, or at best, maintain if I am exercising daily.

Anonymous said...


Please don't listen to people telling you to "eat more to lose." They are cracked. For certain people 1000-1200 calories a day is perfectly acceptable. I cannot lose weight unless I'm eating 1100 or under. That's just the way it is, and I've had to adjust to that being the upper limit. People who say you "shouldn't go below 1000 calories" just don't understand that people have different caloric needs depending on age, activity level, medical health, etc. With a damaged metabolism, or just being older, or shorter, or not active, all of these things add up to needing fewer calories in a given day.

Do what works!

Anonymous said...

I think a 1/2 lb a week is good too. It adds up! Maybe as the weight continues to drop, you'll be able to get off your blood pressured medication and will feel less side effects from it. And I bet you'll have more energy just from the weight loss itself.

Hopefully you won't enter perimenopause/menopause until after you're done losing your weight. Once peri started it was like pulling teeth for me to get a pound off. I don't even want to talk about menopause. The effects of it on weight should be illegal.

If the gluten free diet isn't helping, it might be nice to actually go off of it. It will add back lots of options for you, especially for traveling.

Anonymous said...

I realize this is probably going to fall on deaf ears, but I'm going to say it anyway, because it kills me to read this stuff. Your metabolism is not broken. It cannot be broken. Well, it can. But it can also be fixed. You break your metabolism by eating too little. You fix it by eating enough. I am soooo tired of hearing people say that their metabolic numbers show they can only eat so many calories or they will gain. Well, yes, that is the case because when you eat so little for so long your metabolism down regulates in order to keep you alive. That is how people who are anorexic survive. However, numerous studies show that when an anorexic refeeds, their metabolism picks back up. I know many people who were tested metabolically during anorexia and they were burning 1100 calories a day. When recovered, they were burning 3000 or more a day. Just because you are fat, does not mean that this works any differently. 1000 calories a day is what an anorexic person eats. It does not matter if you are thin or fat or whatever. It is not enough for a person to survive.

Yes lyn. When you ate more calories you gained weight. That's going to happen because your metabolism is not automatically going to rev back up after eating so little. Unifirtunately, weight gain is a side effect of low calorie diets. Also a side effect of low calorie diets? Every side effect you listed related to your thyroid. The reason you don't feel better is because you are eating too little and your body needs fuel. Medication can do only so much to help your thyroid if you aren't eating enough. A person who has anirexia has the exact same symptoms....even screwy thyroid numbers.

It pains me to read your blog and all the comments that are left by people here. I understand they are well meaning but they are so off base. All the research points to the fact that low calorie diets are not successful. Your own experience proves it. I wish you would stop demonizing food and realize that you need it just as you need air to survive. Eating well is more important then weight loss. Especially when you are still feeling crappy.

Lyn said...


I tried that approach (once intentionally, eating double the calories I am eating now, and several times unintentionally just because I got tired of counting calories, was depressed, and ate more over the winter). If you look back over my blog, I *did* listen to the commenters who told me to do a "refeed" and eat higher calories and fat to try and bring my metabolism up. I was always assured by them that if I did this, I'd have an initial gain but months down the road it would reverse. Well, we see how that worked out. When I counted and stayed higher, I just gained. And it has not reversed. After I did a "refeed" I went to the hospital for metabolic testing (accurate, precise procedure by medical staff) and I still had a slow metabolism by their counts. I don't see where you get the term "broken" because I don't believe a metabolism can "break"; that makes no sense. However it *is* slow, maybe because of Medifast, maybe because I am older, or due to pre-menopause, or maybe because I was nearly immobile for two years and hardly walking at all. All of those things factor in. I am not sure if you have a medical background, but since you are "anonymous" and not my doctor, I have to opt to at least give more weight to my actual doctors' advice. My primary doctor has known me for years, and he does NOT advise me to "eat more." The endocrinologist has worked with me for a year, and tells me to eat LESS. Even my gynecologist, who has known me for almost twenty years, is not telling me I should "eat more to lose weight." He is a more natural-approach doctor, and I am going to see him again soon and run all this past him, too. But he has followed me all this time, and I am very open with all three doctors about what I eat, my calorie levels, my activity levels, etc. None of them says "you have gained weight since I last saw you. You definitely aren't eating enough. Why not try doubling your calories?" Because really, that makes no sense at all, in theory nor in my own experience.

Anonymous said...

A small percentage of people really do have gluten issues. A larger percentage probably feel better going off gluten because they eliminate other things (sugar, processed foods, etc.). If you tried it for 6 months and your endocrinologist says it didn't make a difference, then you're probably in the majority of people for whom it is not an issue. ~babs

Anonymous said...

not trying to attack, only trying to understand.

first you said you ate an entire box of gluten free cookies over the weekend which made you regain the two pounds you'd lost - then you said in the comments you don't eat cookies. (well, at least not this month.)

please explain to me how you ballooned up to 250 pounds by eating a cookie or two within your calorie limit. the way your body processes food sure is fascinating to me.

Susan said...

Lyn, I'm going tp suggest that you find a "functional medicine" dr. Please...

Anonymous said...

Broken/slowed same thing. People seem to interchange it here. Last comment and I will leave it be. It takes months to rev your metabolism back up. Not a few months or few weeks. Months, sometimes more then a year. Which is why you never saw benefits. I know weight gain sucks. And is scary. Especially when you are already considered obese. And doctors unfortunately don't seem to know much about appropriate calorie levels. They told my anorexic daughter to eat 1500 calories a day to weight restore. Research shows otherwise, but they scared her into thinking she was binging by eating more. When she went to an appropriate doctor she got the right advice and is now healthy and happy eating close to 4000 calories a day and not gaining weight. This was after she was eating less then 1000 for well over a year. Doctors have weight bias just like everyone else in this country. No doctor is ever going to tell a fat person they should eat more. I take that back, the eating disorder specialist who treated my daughter wouldn't. He made it clear that dieting is the worst thing a person can do for their health and that any other "prescription or treatment" that had such a low success rate would never be approved by the FDA. Less then 5% of dieters keep the weight off long term. Two things you should read about are the Minnesota starvation experiment and also body of truth by Harriet brown. I personally think eating more makes tons of sense. A car can't run without gas, neither can your body run and work right without fuel (food). Unfortunately our society has brainwashed everyone into thinking the less they eat the better. It's sad.

Lyn said...

Anonymous (babs)~

yeah, I tend to feel better eating less sugar and processed stuff, for sure. My "how I feel" also comes and goes in waves but the low energy is pretty constant. Being gluten free *does* keep me from eating lots of carby things such as cakes etc, simply because they are not always available gluten free and I don't want them badly enough to go search for them. I guess I felt best on AIP. It's a hard thing for me to keep up though.


You misread. I did not eat any cookies over any weekend, and have not regained the 2 pounds I lost so far this month. I do not weigh 250. I weighed 238 at last weigh in. The point of what I said is that I lose very slowly and regain very quickly. I know that IF I were to eat a box of gluten free cookies over a weekend, I would regain. BTW "a box" of gluten free cookies is about 8 small cookies. It's not a "binge" to eat 4 small cookies in a day. However, I am not eating them... but just wanted to clarify for you.


Am looking, but the one in my network has some bad reviews/patient experiences online. I'm going to ask around and see what I can find. Also I did ask the endocrinologist about doing cortisol levels and he refused since we did them last year (urine and blood) and they were normal.

Anonymous (last)~

I don't think it would be wise for me to eat 2500 calories a day for a year and end up back near 300 pounds again. I gain rapidly on that kind of calorie level and could easily regain 60 pounds in under a year.

Vickie said...

I think someone else mentioned this same point, even if gluten is not an issue, the practice of staying away from processed often does help.

Gluten sources are rarely eaten by themselves. They are normally in processed items. There are so many ingredients in processed things that it is hard to know what we are getting, what bothers us. It is also easy to eat a lot of sugar and salt, etc hidden in the product. So just sticking to whole-ish type foods simplifies that whole thought process. It is just a better practice, in my opinion. You know exactly what you are really eating.

a real trap, in my opinion, is buying processed food exclaiming "healthy", "all natural", "organic" or "_______ free". They are just as processed as the processed on most of the other shelves in the store. The inner aisles of a health food store are just as junky as any other grocery, in my opinion.

I have discovered very odd things that bothered me. So I had to simplify it even further. Eating one fruit instead of several fruits mixed together, for example, showed me I have a definite problem with cantaloupe. As odd as it sounds, I had almost always eaten cantaloupe mixed with other fruits (my whole life). It gives me severe migraines. Ice berg lettuce bothers my GI system hugely. Beets do too.

I think a lot of us have very sensitive systems and that has added to our weight issues. Triggering secondary conditions, causing us to feel bad/have pain, complicates everything. Swelling, inflammation, bloat, joint issues cause problems. GI and female and migraine issues are common chronic problems too.

Eating as cleanly as possible, eating mostly green type veggies, some fruit, dairy if we can tolerate it, egg whites, lean meats, very moderate starchy type veggies, just makes things a lot easier all the way around, in my opinion.

Susan said...

Lyn i sent you an email with my cortisol results over 24 hr period...hope attachment works...

Lyn said...


got it! Emailing you back now, thanks!

Heartful said...

Just to add more crazy input to your overflowing file. I too have thyroid issues and have been on meds for years, not really noticing much of a difference. A few months ago, for my yearly lab work, my doctor noticed that my T3 was low as was my T4. (I'm not even sure if my T3 had ever been tested before. And if not, I'm not sure why not.) Anyways, I now take two different thyroid medications and I am noticing a difference in my energy levels. As you know, I'm actively trying to lose weight and am having some success so perhaps the new med is playing a role. I'm not really sure. It might be worth checking into for you.

(I feel like people are throwing advice at you left and right. Try this. No, try this. No, that won't work. You need to do this. No, this works for me, so it will work for you. No, you're all wrong, this is the answer. I really have no idea what is going to work. I'm still trying to figure it out for myself, but I just thought I'd toss out the T3 thing in case that might be a factor. If not, feel free to ignore.)

Anonymous said...

when taking natural thyroid replacement, the body does compensate by producing less of its own hormone. This shoulnt be read as "oh well" thyroid replacement doesnt work. This is poor medical advice. With natural thyroid, you will most certainly need to keep upping your dose until you find what works for you and even then you may fluctuate. The TPO test is important. High antibodies is indicative your body is under attack.

Keep off the gluten-increase your thyroid replacement-find a better doctor.