Newb Here

[Wahls]

Hello everyone!

 

All of my problems can be traced back to around 7-8 years ago. I am currently a 22y/o male. I began having unbelievable migraines, difficulty sleeping, chest pain and tightness, strange neurological problems, muscle loss (multiple muscle strains and tears from sports for no real reason), hair loss, and intermittent bowel issues. Multiple doctors and specialists were unable to find anything for years.

 

September of 2012, I begin having a very consistent pain in the lower right side of my stomach in the shape of an inch and a half away from my belly button. By October, I began having very loose stool. By November, I was calling into work regularly. December caused me to consider if ripping my eyeballs out would hurt less than the pain I was experiencing and I finally went to a doctor who told me it was "classic IBS".

 

Two weeks in, IBS medications took the edge off the pain but all-in-all, did very little. I went to a new doctor, expecting the same ol same ol. Take some random over the counter, you have a stomach virus.

He actually began to examine me. He listened to my stomach for what seemed like several minutes and said, "I think you have a thyroid problem." Sure enough, my TSH was something unbelievable. He diagnosed Hypothyroidism from just listening to my stomach. I didn't even mention the other symptoms. Labs actually came back as Hashimoto's disease causing hypothyroidism. I was impressed.

 

A month on thyroid medication, I began to feel incredible with moderate progress with my stomach. Instead of going to the bathroom 10 times a day, It was only 6-7. With the reduced pain, I began to notice a pattern. I had always been big on only eating raw foods and very little bread. Doctor suggested I may have Celiac disease that my thyroid problems were covering up.

One month without gluten (and staying on thyroid meds) has given me my life back, except that I am finding out that I deal with constant cross contamination issues. I am not "technically" diagnosed, but my doctor said that he is sure that the thyroid AND celiac disease are the contributing factors of my issues. It makes a lot of sense and it good enough for me.

I'm currently on day 3 of being useless because I ate something, I don't know what, that has rendered me useless. I can't work, I can't eat, I can't sleep, I can't think, I can't do anything.

What do you guys take for the pain and all the other symptoms (diarrhea, dizziness, etc.)? Any strategies for not making yourself go insane? 

Thanks.

 

[nvsmom]

Welcome to the board, Wahls. You'll find there are quite a few of of us around here with hypothyroidism and celiac, so there will be many around here to commiserate with.

 

Are you fine with accepting that you need to stay off gluten for life? I just ask because you haven't been of gluten for very long, and it sounds like you've had a few "glutenings" (very common at first), so it might be a good time to get tested for celiac if you feel you might want a more official diagnosis. I would guess if you went back on gluten for a week or two, you would be able to get a fairly accurate blood test.  If you are fine moving on, gluten-free, from here then just ignore that... Your doctor sounds very educated when it comes to autoimmune disorders - not many doctors would have discovered your hypothyroidism or known of the link ti celiac.. He's a keeper.

 

I am impressed that you felt better after only a month on thyroid meds. Most people take months to find the ideal dosage or med type. I'm a little jealous myself as I've been tweaking my meds for 7 months and I only feel partway better.

 

How are your nutrient levels? celiacs (and Hashi's patients) are low in many, including B's (B12), calcium, iron/ferritin, D, and potassium. Some find they can feel their best, and their recovery is slowed when they are lacking in some nutrients.

 

Some around here recommend a good probiotic to help your insides get back into balance. That could help.

 

L-glutamine is helpful for muscle recovery (made a big difference when I was lifting weights) and since your small intestine is very muscular, it can help with the healing. 

 

Are you living in a gluten-free house? If not, you might want to ensure your foods are in spots that won't be contaminated - top shelves in fridges and cupboards are safest (no crumbs will fall in). Are you jams, mustards, and butters contaminated?  ARe your baking supplies (like sugar, baking powder and baking soda, salt) all contamination free or is it possible that someone double dipped with a gluten coated measuring cup or knife? Have you checked your vitamins, supplements, lotions, shampoos and soaps? Some sauces and spices have gluten (soy, mayo, wochestershire, barbque or mustards).

 

I found it quite a hassle in the first month to go through EVERYTHING but it simplified my everday cooking and I haven't glutened myself with my own baking yet.

 

If you are eating out a lot, you may have to stop. It really is a crap shoot when you eat out, and I personally don't think that the convenience is worth the risk.

 

As for feeling better after a glutening? I just take tylenol to help take the edge of migraines, Drink a bit more water and sleep more.... patience is crucial (for me) when dealing with celiac disease and hashi's. There's just not rushing the recovery.

 

Best wishes!

[Takala]

Are your thyroid medications gluten free ?  They are not required to be, nor are they labeled if they contain gluten or other allergen, an ongoing scandal the FDA refuses to address yet here in the USA. 

 

You have to check with the pharmaceutical manufacturer if your drug store is being a pia about it, they should be able to give you the contact information, you can try looking it up on the internet, but it will not be up to the date information. 

 

I also have this "no leftovers" rule about cooked food in the refrigerator if I have an "off" feeling from eating it the day before.  

 

Soy flour, tofu, soy protein bothers a lot of people.  So does milk lactose or milk protein casein from dairy, so you may want to cut those out for a bit and see what happens, you may get the dairy back later.  "Neuro" people are the most sensitive to cross contamination, we tend to be the real hard core avoiders of processed foods that a regular person may be scoffing down without a cramp or a bout of head fog.  When they first came out with a lot of those newer gluten free cereals based on the traditional flavors, I was really happy about it for a month or two, then gave up because I was getting so groggy all the time, it was a nice revisit to the concept, but I finally understood why nobody in my family ate cereal for breakfast ( I suspect I am third generation with this gluten intolerance and have gotten it from both sides of the family)       Oh, and DON'T do oats at first, at all, wait until you feel good months from now, and do a cautious test intro, if at all. 

[Wahls]

Replies in bold:

Welcome to the board, Wahls. You'll find there are quite a few of of us around here with hypothyroidism and celiac, so there will be many around here to commiserate with.

WOO HOO!

 

Are you fine with accepting that you need to stay off gluten for life?

I ate very little in grains and sweets before, so, not really an issue. I've had very little issue psychologically transitioning. Only time I ever had an issue was when I saw a buttermilk pie...

 

Your doctor sounds very educated when it comes to autoimmune disorders - not many doctors would have discovered your hypothyroidism or known of the link ti celiac.. He's a keeper.

Strangely enough, his specialty is sports medicine.  Heh.

 

I am impressed that you felt better after only a month on thyroid meds. Most people take months to find the ideal dosage or med type. I'm a little jealous myself as I've been tweaking my meds for 7 months and I only feel partway better.
 

Oh, I still had problems after a month. But my TSH was so high that it didn't take much to bring it down and feel better. My doctor originally asked me about my diet and I brought along a food journal where I logged everything I ate and when I had pain. It showed that I would have pain for no real reason. The thyroid was causing my small intestine to cramp at random which made it seem like it had nothing to do with the food I ate. Fixing the thyroid (at least a little bit) slowed down the cramping and made the pattern emerge, which made the the probable diagnosis of Celiac possible.
 

How are your nutrient levels? celiacs (and Hashi's patients) are low in many, including B's (B12), calcium, iron/ferritin, D, and potassium. Some find they can feel their best, and their recovery is slowed when they are lacking in some nutrients.

Not a clue. I do suppliment daily with a multivitamin and creatine (thyroid meds haven't completely fixed a lack of muscle recovery yet).
 

Some around here recommend a good probiotic to help your insides get back into balance. That could help.

My doctor suggested that and he gave me a month's worth of Align. Originally, I thought that they would be way too expensive, however with all the work I am missing, I may not be able to afford not to get them.
 

L-glutamine is helpful for muscle recovery (made a big difference when I was lifting weights) and since your small intestine is very muscular, it can help with the healing. 

Great idea. Haven't taken any of that in awhile. I actually have a thermogenic with that in it.

 

Are you living in a gluten-free house? If not, you might want to ensure your foods are in spots that won't be contaminated - top shelves in fridges and cupboards are safest (no crumbs will fall in). Are you jams, mustards, and butters contaminated?  ARe your baking supplies (like sugar, baking powder and baking soda, salt) all contamination free or is it possible that someone double dipped with a gluten coated measuring cup or knife? Have you checked your vitamins, supplements, lotions, shampoos and soaps? Some sauces and spices have gluten (soy, mayo, wochestershire, barbque or mustards).

 

I live with one other person and she would rather stuff her face with a cheeseburger 6 times a week from McDonalds and.or eat a bag of chips as a meal than eat anything from home. I have not had an issue eliminating gluten from the refridgerator. I have not checked my vitamins, supplements, soaps. It never occurred to me that I could suck in gluten through my pores. D'oh!

I found it quite a hassle in the first month to go through EVERYTHING but it simplified my everday cooking and I haven't glutened myself with my own baking yet.

 

If you are eating out a lot, you may have to stop. It really is a crap shoot when you eat out, and I personally don't think that the convenience is worth the risk.

Not an issue here.
 

As for feeling better after a glutening? I just take tylenol to help take the edge of migraines, Drink a bit more water and sleep more.... patience is crucial (for me) when dealing with celiac disease and hashi's. There's just not rushing the recovery.

 

Best wishes!

 

Incredibly great info. Thank you.
 

Are your thyroid medications gluten free ?  They are not required to be, nor are they labeled if they contain gluten or other allergen, an ongoing scandal the FDA refuses to address yet here in the USA. 

That never occured to me either. What would they use gluten for in medication? Filler?

 

You have to check with the pharmaceutical manufacturer if your drug store is being a pia about it, they should be able to give you the contact information, you can try looking it up on the internet, but it will not be up to the date information. 
 

I also have this "no leftovers" rule about cooked food in the refrigerator if I have an "off" feeling from eating it the day before.  

Unfortunately, I don't really get to eat the next day if I something went wrong. lol
 

Soy flour, tofu, soy protein bothers a lot of people.  

 

Soy flour messed me up. Interesting.
 

So does milk lactose or milk protein casein from dairy, so you may want to cut those out for a bit and see what happens, you may get the dairy back later.  "Neuro" people are the most sensitive to cross contamination, we tend to be the real hard core avoiders of processed foods that a regular person may be scoffing down without a cramp or a bout of head fog.  When they first came out with a lot of those newer gluten free cereals based on the traditional flavors, I was really happy about it for a month or two, then gave up because I was getting so groggy all the time, it was a nice revisit to the concept, but I finally understood why nobody in my family ate cereal for breakfast ( I suspect I am third generation with this gluten intolerance and have gotten it from both sides of the family)       Oh, and DON'T do oats at first, at all, wait until you feel good months from now, and do a cautious test intro, if at all. 

I've had no dairy issues (thank God). Can you elaborate more on what you refer to when you say "neuro" people? Celiacs that get the migraines and dizziness? And I'm not touching oats. Nooo way.

Question:

Anyone have a clue how out of the ordinary it is to be to have Hashi's and Celiac with my stats (22 y/o male)? My doctor acted as if it was fairly uncommon to borderline rare. He said almost all of the people he'd seen with one or the other are female and older. I look around the forums and it seems as if this may be the case, although I admittedly haven't looked all that much.

Thanks for the great replies.

[GFinDC]

Hi Wahls,

 

There was a story about a sports team going all gluten-free a while back.  I think it was  bicycle team.  Anyway, some sports people are trying gluten-free sometimes to improve their performance.  Could be why your doc is up on gluten-free and celiac disease.

 

I don't know the numbers but the do say Hashimoto's is more common in women than men.  Hashimoto's is also more common in people with celiac disease.  As are many other autoimmune diseases.  Search on celiac related condition to find lists, or associated condition.

 

If you stick with whole foods that you cook yourself from scratch, you can eliminate a lot of guesswork from your diet.  You can also eliminate a lot of ingredients that may not be good for you.  Processed foods are full of all kinds of different chemicals to color them, emulsify them, stabilize them, preserve them, and prettify them.  None of that stuff is food, it's junk they put in our food to make more money from us.  Keeping processed foods to a minimum for a few months at least is helpful.

 

Do check all the pills you take for gluten.  A new toaster is a good idea too.  A crumb is all it takes to set off an immune system reaction.  Remember, the immune system reacts to germs that are too small to see without a microscope.  It is very sensitive.

 

Tips for the first 6 months:

 

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

What's For Breakfast Today?
https://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/

[nvsmom]

Replies in bold:

 

Incredibly great info. Thank you.

 

Question:

Anyone have a clue how out of the ordinary it is to be to have Hashi's and Celiac with my stats (22 y/o male)? My doctor acted as if it was fairly uncommon to borderline rare. He said almost all of the people he'd seen with one or the other are female and older. I look around the forums and it seems as if this may be the case, although I admittedly haven't looked all that much.

Thanks for the great replies.

 

Hashi's is much more common with women than it is in men, but celiac disease seems to have a more even distribution amoungst the sexes... and celiac disease seems to have the ability to kick start other autoimmune disorders (like Hashi's). It seems to me that I have heard of more men having both, or just celiac, than just hashimoto's.... but that is just a guess.

 

I don't think your age is that unusual for celiac, or celiac with hashimoto's. It is young for just a hashimoto's diagnosis (I think). I've had celiac for my whole life (not unusual) and I'm pretty sure I developed hashi's when I was around your age... but my doctor was NOT as on the ball as yours! LOL

 

... Technically your doctor is right, most of us are female and *ahem* older.  LOL

 

Thyroid med manufacturers are usually very transparent when it comes to their ingredients. I know Synthroid (in Canada anyways) is gluten-free.

[Wahls]

If you stick with whole foods that you cook yourself from scratch, you can eliminate a lot of guesswork from your diet.  You can also eliminate a lot of ingredients that may not be good for you.  Processed foods are full of all kinds of different chemicals to color them, emulsify them, stabilize them, preserve them, and prettify them.  None of that stuff is food, it's junk they put in our food to make more money from us.  Keeping processed foods to a minimum for a few months at least is helpful.

 

I think I may have figured out what happened.

The only real candy I eat from time to time are airheads. Airheads themselves are gluten-free, but on the label it has the ominous cross-contamination warning. I am an idiot.

I have done well cooking whole foods and I am a surprisingly good cook for my age. I will purge through the threads you provided. Thanks.

Any suggestions on corn tortilla chips to avoid cross contamination?

[Wahls]

Hashi's is much more common with women than it is in men, but celiac disease seems to have a more even distribution amoungst the sexes... and celiac disease seems to have the ability to kick start other autoimmune disorders (like Hashi's). It seems to me that I have heard of more men having both, or just celiac, than just hashimoto's.... but that is just a guess.

 

I don't think your age is that unusual for celiac, or celiac with hashimoto's. It is young for just a hashimoto's diagnosis (I think). I've had celiac for my whole life (not unusual) and I'm pretty sure I developed hashi's when I was around your age... but my doctor was NOT as on the ball as yours! LOL

 

... Technically your doctor is right, most of us are female and *ahem* older.  LOL

 

Thyroid med manufacturers are usually very transparent when it comes to their ingredients. I know Synthroid (in Canada anyways) is gluten-free.

 

 

Well, I guess technically anything over 22 is older than me.

[JNBunnie1]

Wahls, I just wanted to respond to a comment you made earlier in the thread about

soaps and toiletries and such. You can't actually suck gluten up through your pores.

The recommendation to check personal care products is so that things that go in or

on your mouth, like chapstick or toothpaste, are safe, and also because who hasn't

gotten soap in their mouth, right? For women, long hair can be more of a concern, I

know I've gotten a mouthful of hair too many times to count, so I would want to be

careful not to use hairspray with wheat starch in it or anything like that. I know a lot

of Aveeno products have oats in them, I wouldn't want to use facewash or lotions

for example, if it had oats in it. Those are the kinds of things we're recommending

you check on.

[Wahls]

Wahls, I just wanted to respond to a comment you made earlier in the thread about

soaps and toiletries and such. You can't actually suck gluten up through your pores.

The recommendation to check personal care products is so that things that go in or

on your mouth, like chapstick or toothpaste, are safe, and also because who hasn't

gotten soap in their mouth, right? For women, long hair can be more of a concern, I

know I've gotten a mouthful of hair too many times to count, so I would want to be

careful not to use hairspray with wheat starch in it or anything like that. I know a lot

of Aveeno products have oats in them, I wouldn't want to use facewash or lotions

for example, if it had oats in it. Those are the kinds of things we're recommending

you check on.

 

Great ideas. Thanks.

Any suggestions on corn tortilla chips and brands? I'm afraid I'm going to get cross-contamination...

[GFinDC]

Hi Wahls,

 

I eat Mission brand corn chips and tortillas..  They have dedicated production lines and I have never had a problem with them.

[Coryad]

Hi Wahls

I have Hashi's, Celiac, Pernicious Anemia .... possible RA. On average, a person with one autoimmune disease often has 4 or more of them, with one covering up another.  And on that happy note  Welcome!

 

I have a whole list of foods to avoid, frankly I should just subsist on potato chips LOL!  I too eat Mission brand corn chips and tortillas, never had a problem. You may want to keep a food diary and see what your triggers are. It really helped me at the beginning.

[kareng]

US list:

Open Original Shared Link

[Wahls]

Hi Wahls,

 

I eat Mission brand corn chips and tortillas..  They have dedicated production lines and I have never had a problem with them.

 

Excellent, thank you.

 

Hi Wahls

I have Hashi's, Celiac, Pernicious Anemia .... possible RA. On average, a person with one autoimmune disease often has 4 or more of them, with one covering up another.  And on that happy note  Welcome!

 

I have a whole list of foods to avoid, frankly I should just subsist on potato chips LOL!  I too eat Mission brand corn chips and tortillas, never had a problem. You may want to keep a food diary and see what your triggers are. It really helped me at the beginning.

 

Yep, my food diary is what helped me determine was was going on! Excellent tool.

 

US list:

Open Original Shared Link

 

Life saver! Woo hoo!