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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.

 

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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!

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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)  :rolleyes:  :ph34r:   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. 

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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)  :rolleyes:  :ph34r:   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.

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

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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

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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.

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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?

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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. :)

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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.

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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...

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Hi Wahls,

 

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

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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 :D  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.

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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 :D  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.

 

 

Life saver! Woo hoo!

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On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of grains, but I have reintroduced rice using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My Paleo+Fasano diet has been assessed by a registered dietician to include every nutrient and micronutrient that I need so I guess having a really good diet is helping too. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. A lot of the steps I have taken to avoid gluten would be seen by some as over the top but I can say that for me, when I introduced these steps, that's when I stopped getting reactions and it's all worth it. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
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