Uncertain

[BettyinMD]

Hello! Another fellow newbie here..seems to be a lot of us lately!

Anyway, the questions I have are related to the connection between this thyroid problem I have and questionable gluten intolerance...

Let me rewind a little.....

I was always active growing up, but kinda 'slower,' than my friends...got tired easily, etc..and I've always been heavier set as well(could be genetics?) I also had really bad nose bleeds from infancy, that by the time I was about 11, my mom took me to get my nose cauterized..Starting around 12 I got severe migraines, to the point of getting sick to my stomach..

Fast forward even more to getting pg with my second child...some of my thyroid levels came back borderline low, but not enough to take meds..I got tested again after my daughter was born and things were fine...well, a year later things were NOT fine..I had trouble losing the weight I had gained( I ate ALOT of pasta when I was pg ) was fatigued a lot(thought because I was a mom) But I ate well, and exercised consistently and the weight wouldnt come off..I went to the doc to get a basic metabolic panel done, and ta-dah! I was hypo-t...not extremely out of range up or down, but obviously enough to where I was feeling it!

My doctor was very unhelpful, gave me meds and sent me on my way basically..but that wasn't good enough..I started digging around on the net,(pretty sad you can get more answers from the internet, than you can from your Doc!) I read about food intolerances being related to the thyroid...I asked my mom if I ever got tested for any allergies, and interestingly enough she said I couldn't eat gluten when I was a baby!!

It came on when I was about 18 months, after I had surgery for an infection in my glands in my neck..she couldnt figure out why I kept having diahrea and she had to change my cloths multiple times a day! she took me to the doctor, and even back then they just said take out all 'wheat products.' She did, and I was cured within a day she says! Then a day a couple months later the babysitter forgot and gave me a graham cracker, and it started all over..I was sick for a week..

Thats all my mom can remember and she says i eventually "grew out of it." But have I?

Now as an adult, I have hypo-t, and no one has sat down to talk to me about WHY...

I recently gave up gluten, at least the obvious culprits..and my stubborn body has actually lost 6 pounds in the last two weeks! And I haven't been taking my thyroid meds for almost two months..

I made an appt to see an endocrinologist on the 19th of August, and I want to sound like I know what Im talking about lol..I dont even know if I should ask for any tests..but I want to challenge the meds I was given to see if I can get better with just my diet...

Umm, I guess thats it.. Thanks for reading!

Anyone else with similar stories/situations?

[ravenwoodglass]

Hi and welcome, sorry it took so long for a response to your post. Hopefully you have been reading here and now know that yes celiac can have detrimental effects on your thyroid. Now on to the most important thing. It used to be thought that children would outgrow celiac. They now know that is not a case. Do be aware that if you are already gluten free the tests for celiac will be a false negative. Also make sure you let your doctors know you were diagnosed with it as a child. I am glad you are seeing such positive changes with the reintroduction of the diet, that is often the best test there is.

[BettyinMD]

Hi and welcome, sorry it took so long for a response to your post. Hopefully you have been reading here and now know that yes celiac can have detrimental effects on your thyroid. Now on to the most important thing. It used to be thought that children would outgrow celiac. They now know that is not a case. Do be aware that if you are already gluten free the tests for celiac will be a false negative. Also make sure you let your doctors know you were diagnosed with it as a child. I am glad you are seeing such positive changes with the reintroduction of the diet, that is often the best test there is.

Hey, that's ok! Thanks for responding though! Yes, I have been doing a lot of reading here, and its been very helpful yet confusing at the same time..I understand there are a plethora of symptoms of celiac disease..I dont have the classic tummy troubles most people do, accept when I was younger..even then, they didn't do any formal testing..they just told my mom to take out gluten and I was fine!

The only thing she remembers is that eventually I could it, but in small amounts...weird! I guess I'm having a hard time knowing if I should even pursue testing now.

I'm sure my doctor is going to think Im INSANE! But curiosity has the best of me...

[ranger]

My doc did not want to test me for celiac, but I insisted. With your history, testing would be a good idea, but you will have to injest gluten for awhile first. I had been on a gluten-free diet for a month before testing and, of course, tested negative. That was before I got on this forum and I was ignorant about all things celiac. At this point, it would be over my dead body before I'd eat gluten to do a proper test. The improement on this diet is enough "proof" for me. Let us know how this works out for you.

[BettyinMD]

My doc did not want to test me for celiac, but I insisted. With your history, testing would be a good idea, but you will have to injest gluten for awhile first. I had been on a gluten-free diet for a month before testing and, of course, tested negative. That was before I got on this forum and I was ignorant about all things celiac. At this point, it would be over my dead body before I'd eat gluten to do a proper test. The improement on this diet is enough "proof" for me. Let us know how this works out for you.

Thats one of the confusing things...almost everyone says, 'oh you have to eat gluten to do the testing, but I would never do that!'

So whats a girl to do? If testing is a good idea, but eating gluten for the testing isn't such a good idea, then????

And what is the point of testing? Because I'm curious? Or to make sure that I'm not unnecessarily avoiding things I don't have to? Or to make sure I am, so I can do everything I can to avoid gluten..I just got into reading labels and all that..at first it was just food..

Personally, it would be like finding the missing piece of the puzzle! And I work as a Personal Trainer, and I would want to be a good example for others around me...

Also, how crucial would it be if things did turn up positive, having my kids get tested? They don't have symptoms now, but I know all it takes is for a traumatic event to 'turn something on.'

Sorry for all the crazy questions! Thanks for helping out! :rollseyes:

[BettyinMD]

One more question

Would it "pay," to skip all the hassling with the docs and just go straight to enterolab?

Im already thinking the worst, and Im betting my doc is going to think Im off my rocker(first appt with this endo)

But who knows, maybe she'll just nod in agreement and send me right away for testing!(in my dreams!)

I'm just trying to find out the CAUSE of my thyroid problemo..not mask it with meds, meds and more meds!

[ravenwoodglass]

One more question

Would it "pay," to skip all the hassling with the docs and just go straight to enterolab?

Im already thinking the worst, and Im betting my doc is going to think Im off my rocker(first appt with this endo)

But who knows, maybe she'll just nod in agreement and send me right away for testing!(in my dreams!)

I'm just trying to find out the CAUSE of my thyroid problemo..not mask it with meds, meds and more meds!

If the idea of doing a gluten challenge makes you cringe then I would say yes go right to Enterolab. They can do a stool test for the antibodies and while they cannot diagnose celiac they can tell you if you are making antibodies for up to a year after you have gone gluten free. They can also test for antibodies to soy, egg and yeast as well as testing for malabsorption and they do a pretty comprehensive gene panel. It is not unusual for celiacs to have other issues including thyroid. If you have been able to discontinue your meds with no ill effect after going gluten free in my opinion that is a real clue in itself.

[BettyinMD]

I've only been off my meds for about 1.5 months(cause I was too lazy to refill script, and I started reading about natural healing, etc), but gluten free(for the most part) for three weeks..

I will wait and see what the docs opinion is..I'm still going to remain gluten-free to see if my thyroid tests improve at all...probably in another two months get more tests to see!

If they are improved, then I can eat a bunch of gluten without my thyroid meds to prove that was the culprit? Maybe I can be there first guniea pig or something..

[ravenwoodglass]

I've only been off my meds for about 1.5 months(cause I was too lazy to refill script, and I started reading about natural healing, etc), but gluten free(for the most part) for three weeks..

I will wait and see what the docs opinion is..I'm still going to remain gluten-free to see if my thyroid tests improve at all...probably in another two months get more tests to see!

If they are improved, then I can eat a bunch of gluten without my thyroid meds to prove that was the culprit? Maybe I can be there first guniea pig or something..

Personally I would not advise that. For one thing for many of us the reaction we have to gluten after being gluten free for a time can be very violent and in some rare instances can result in permanent damage. I can only use myself as an example but the first challenge I did for my allergist the reaction was severe but not extreme. My second challenge for the GI doctor a couple weeks later resulted in a GI bleed that lasted 3 hours. Now 7 years later my last 'accident' (I would never eat gluten again on purpose) resulted in a bleed that lasted over 3 days. At the very least you would set back your healing at worst you may make your thyroid condition so much worse that you wouldn't recover to the extent that you are so far. IMHO it would be best to just continue healing and be thankful for any related issues that have gone into remission.

If you want your doctor to recognise the relationship between your thyroid issues and gluten there is a lot of peer reviewed research and articles that could open the doctors eyes without risking damaging yourself further.

[BettyinMD]

Had a follow up appt with the endo. yesterday..

It WAS a big FAT waste of my time yesterday..

Apparently I was supposed to get labs redone that I knew nothing about..so the doc wouldn't even see me *grumble* you couldn't have checked my record before I drove 30 minutes here to tell me that?

Oh well..so in two weeks Ill get em redone..that will be 2 months no meds and no gluten..so it'll be interesting to see what the test results will be..

If they are worse, then that sucks..if they are BETTER then that would be AWESOME! I'll have my answer too, pretty much...and maybe the doc will listen then..

They don't even know Im off my meds, because, like yesterday for example, I didn't even get a minute to even TALK to the doc..