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When Going Gluten Free Isn't Enough


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#1 MariaOfColumbia

 
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Posted 01 May 2012 - 06:51 AM

A year and a half ago I was in pretty bad shape. Acid reflux/ constipation/ esophageal spasms/ constant abdominal bloating along with constant powerful burps- such that they interupted sleep / eczema and then my joints started hurting a lot and I was diagnosed with early osteoarthritis and told I'd better get used to it, that this was who I was from there on out. :o

Since my family has a history of sensitive stomachs, I dismissed all the GI stuff as something I could do nothing about. I'd seen a doctor, and she had no suggestions for me besides losing weight and taking drugs. The arthritis I sighed about and went on. But the eczema was in my eyelids and was starting to get really painful and oozing. There HAD to be something I could do about that!

So, after much internet searching, I found a suggestion that a wheat free diet could help with that sort of thing. What the heck. Maybe it would help.

After a week of no wheat products (you know how hard that is at first!) I suddenly noticed that my GI symptoms had subsided. For the first time in a very long time, my tummy was QUIET. Wow!

So I read up on gluten free diet and decided that must be my problem. I learned how to keep a completely gluten free kitchen and waited for the eczema in my eyelids to go away. A month passed, but no results. After a particularly shameful chocoholic attack, I noticed that the eyelid problem was worse than ever. The light bulb went on, finally. What if it was (oh help!) chocolate?

It was. After a week of no chocolate, my eyelids healed and haven't flared up since. OK, so ... it's gluten and chocolate. After another month, my joints stopped hurting! THAT was unexpected, and quite welcome! So much for you, Dr. Rheumatologist! Telling me there was no hope. <_<

Despite my care in the kitchen and almost never eating out, I kept getting "glutened". I'd be in pain for days after eating the wrong thing. I could only assume that tiny, tiny microquantities of gluten were somehow getting into the ingredients I was using since I kept reading about that possibility on this site. Even gluten free meal mixes bought from a dedicated gluten free factory would hurt me. It was terribly, terribly frustrating. I'd make a pretty good loaf of gluten free bread (NOT easy) and be hurting for days. The same with gluten free pizza. And even the absolutely delicious gluten free carrot cake I developed.

Finally a year later, after getting hit bad by an impossible meal (tuna salad with lots of boiled eggs in it) I started looking for another answer.

After googling "tuna intolerance" I came upon a website about histamine intolerance. After an unbelieving look at the long, long list of foods that histamine intolerant people can't eat, I dismissed it. That couldn't be me. That was just crazy! No one could live like that!

But it kept nagging me. Later that week I had a single boiled egg for breakfast with nothing but water. I reacted. A glass of orange juice a day later. I reacted. Oh, no... it probably was histamine intolerance. :o As a final test I made some biscuits with rye flour (rye has no histamines, but some gluten) and I was OK. If I'd been gluten intolerant, I'd have been in agony for a few days.

So, histamine intolerance it is.

Now, there isn't a comprehensive, cool, respected website for histamine intolerance. There are a bunch of small ones, mostly in Europe, and the foods listed don't always agree. Of course there are the main categories of anything fermented or yeast raised and tomatoes and wheat and fish and eggs and citrus... but that's the tip of the iceberg.

I went to all the sites I could find and made a master list of ALL the foods listed and spent a couple of weeks avoiding them all. I felt fine. Now one by one every week or so, I try something new on the list and am slowly developing my own personal list of foods I can't eat.

Most of them, I can't. But some on that list I can. And some of them are OK in limited quantities.

And it's not as bad as I thought it would be. Sure, there are times when I have episodes of Poor Me... can't eat what I want to eat.... but I get over it.

Knowing what to avoid and being successful at it is priceless. It's a hundred times better than hurting all the time and not knowing why and doctors just trying to put a drug bandaid on the problem. (Yes, I did see a digestive specialist several times, but she was rather unhelpful.) Histamine intolerance isn't something that's taught in the med schools in the US, I guess.

I've been avoiding histamines for half a year now and I almost never get hurt by food any more. Sometimes I'll try a new thing and have to add it to my personal "can't eat" list (like real maple syrup... who'd have thunk it?) but for the most part my systemic inflammation has gone way down.

I just thought I'd share this. Sometimes it isn't teeny tiny bits of gluten causing the problem. In my case, wheat is just a subset of a much larger catagory of foods I must not eat.
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#2 GFreeMO

 
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Posted 01 May 2012 - 07:26 AM

I think that this happens to most celiacs. For me, it's corn, sals and casein. For others it may be soy or nightshades or eggs. Or all of these! It's hard to figure it all out sometimes because my "trigger" foods make me feel glutened so sometimes I don't know what it was that I ate and that bugs me! Sals can add up too and make you feel glutened. I can't eat real maple syrup either. Have you looked into a sals (salicylates) intolerance?
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#3 heatherm76

 
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Posted 01 May 2012 - 08:01 AM

Wow...this is all so complicated...I'm new to this all and just starting my food diary...so overwhelming!
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#4 kareng

 
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Posted 01 May 2012 - 08:15 AM

Didn't happen to me. Just speaking up for the minority on here. :)

I think that, on this forum, we have 2 main groups of posters. We have people new to Celiac/ gluten intolerance and we have posters who are having problems even on a gluten-free diet. I think a lot of the folks that are like me, learn the basics and go away.

I think most newbies should worry about being the best gluten-free and dairy free for a few months. If that helps, off they go. If that doesn't help, they look for other things that might bother them. I think they need to give the gluten-free diet a fair shot before looking for more intolerances. I know it took me close to 2 years at just gluten-free, to get everything back to " normal."

Sometimes, like Maria & chocolate, we notice something that bothers us. This happens to people without Celiac, too. My mom knows that bell peppers never, even in small amounts, agree with her.

This isn't meant to dismiss Maria's experience. I just mean that every newbie doesn't need to search for multiple intolerances at the beginning.
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#5 Skylark

 
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Posted 01 May 2012 - 09:36 AM

I think this is an extremely important story. The standard advice given to people who are still feeling ill gluten free is "you aren't doing the diet well enough" and I believe it's wrong more often than not.

I made that mistake too, assuming my occasional reactions were from gluten CC. It set me back quite a bit figuring out the REAL problem. Like Maria I have a food chemical sensitivity. I'm sensitive to tyramine and it worsens my brain fog, gives me migraines, and can even cause me GI problems. Fortunately I only seem to react to fairly high-tyramine foods so it doesn't limit my diet too badly. I may also be dairy intolerant but I'm still trying to sort out whether I'm intolerant to all dairy or simply reacting to high amounts of tyramine in cheese and yogurt.
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#6 Gemini

 
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Posted 01 May 2012 - 11:31 AM

This is very important because many people still having problems get side-tracked into thinking that it's gluten causing the problem, when most of the time it's another intolerance or sensitivity that's the culprit. You've done a great job, Maria, figuring this all out and I'm impressed because I love chocolate so understand the difficulty with giving that one up! :o

I know a few other people with the histamine problem and it takes a good sleuth to figure it out because you won't get help from a doctor on that one. Glad you are feeling better!
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#7 MariaOfColumbia

 
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Posted 01 May 2012 - 01:09 PM

Yeah, I was going down the spiral of looking for smaller and smaller quantities of possible gluten contamination when I found out about a gluten home test kit. I bought a couple of the GlutenTox tests and started testing food that made me react.

Nothing I tested had measurable gluten in it. So I tested some wheat crackers just to make sure the test itself wasn't a scam.... and it worked for that.

So at this point I really had a fork in the road. Was I so incredibly sensitive that I'd react to less than 5 ppm? Or was there something else going on?

I could have easily gone down the rabbit hole of "Oh, Gee, I'm sooooooo sensitive" when my boss (who is a literal genius and really into nutrition) pointed out that it really didn't pass the common sense test and there HAD to be something else going on. I was a little resistant to that idea. After all, I felt *better* on a gluten-free diet! Right after that I reacted to pristine tuna salad that tested gluten free.

So, I started googling and soon ran across histamine intolerance. That's it.

I don't think it's salycilates. Aspirin has never bothered me and I can eat several foods listed that the wikipedia article says are to be avoided, as well as can't eat several it says are OK. The two syndromes are quite similar, though.
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#8 Gemini

 
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Posted 01 May 2012 - 01:50 PM

Yeah, I was going down the spiral of looking for smaller and smaller quantities of possible gluten contamination when I found out about a gluten home test kit. I bought a couple of the GlutenTox tests and started testing food that made me react.

Nothing I tested had measurable gluten in it. So I tested some wheat crackers just to make sure the test itself wasn't a scam.... and it worked for that.

So at this point I really had a fork in the road. Was I so incredibly sensitive that I'd react to less than 5 ppm? Or was there something else going on?

I could have easily gone down the rabbit hole of "Oh, Gee, I'm sooooooo sensitive" when my boss (who is a literal genius and really into nutrition) pointed out that it really didn't pass the common sense test and there HAD to be something else going on. I was a little resistant to that idea. After all, I felt *better* on a gluten-free diet! Right after that I reacted to pristine tuna salad that tested gluten free.

So, I started googling and soon ran across histamine intolerance. That's it.

I don't think it's salycilates. Aspirin has never bothered me and I can eat several foods listed that the wikipedia article says are to be avoided, as well as can't eat several it says are OK. The two syndromes are quite similar, though.



WOW! What an enlightened boss you have! All I ever get when I talk of food and nutritional stuff is the ever so common eye roll. Your boss is a keeper!

I have a co-worker who has been diagnosed with ITP, which is an autoimmune platelet problem. You become a bleeder and it's life threatening. He has massive thyroid symptoms, mouth sores all the time, irregular heartbeat that they medicate him for, and now has developed acid reflux. I have tried talking to him about Celiac but he just gets mad and refuses to believe he could have it. He is of Scottish ancestry. They now have him on pills for every problem. Why is denial so deep with food issues? :blink:
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#9 MariaOfColumbia

 
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Posted 02 May 2012 - 05:50 AM

Food is such a basic need that people really have trouble imagining that what they were taught was good for them and tastes good..... isn't.

For me this whole experience has been like losing my religion. I've eaten "healthy" my whole life. Whole grains and organic food was how I was raised. I believed that I was eating the best food I could for optimal health. I'd bake whole wheat bread from scratch. I'd grow tomatoes and eat them fresh from the garden because they were so good for me. When I'd get a cold, I'd drink lots of orange juice because that's what you do for a cold...

Sure, I'd buy the occasional oatmeal creme pie or make a big batch of chocolate chip cookies.... but on the whole I was eating what should have been a really healthy diet.

As it turns out, it's better for me to eat a hamburger patty, french fries and ice cream than that complex, varied and Oh So Healthy diet I grew up with.

I found that quite depressing for a while. How could everything I believed about food for 40 years be so terribly wrong? How can a hot dog and potato chips be better for me than a peanut butter jelly sandwich?

Last year, I didn't even grow a garden. Really, what's the point? I'm not doing it this year, either. Yeah, I can still eat green beans and sweet corn, but it's not really worth the effort for just two items that I can get in decent condition frozen at the store. And I never could grow potatoes worth a darn.

I still try to eat healthy within my extreme limitations. The meat we use is grass fed and organic. The french fries we fry in olive oil. The rice is brown. The ice cream is all natural.

But my heart really isn't in it anymore. I was betrayed by eating "healthy." Well, maybe not betrayed... but for a while there a Weird Al song kept runnning through my head, "Every thing I know is WRONG!"

Now I'm hesitant to be sure that even histamine intolerance is the absolute, ultimate answer. My "faith" has been shot. But, however, this is the model that works best for me- so I'll stick with it for now.
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#10 pricklypear1971

 
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Posted 02 May 2012 - 06:13 AM

Food is such a basic need that people really have trouble imagining that what they were taught was good for them and tastes good..... isn't.

For me this whole experience has been like losing my religion. I've eaten "healthy" my whole life. Whole grains and organic food was how I was raised. I believed that I was eating the best food I could for optimal health. I'd bake whole wheat bread from scratch. I'd grow tomatoes and eat them fresh from the garden because they were so good for me. When I'd get a cold, I'd drink lots of orange juice because that's what you do for a cold...

Sure, I'd buy the occasional oatmeal creme pie or make a big batch of chocolate chip cookies.... but on the whole I was eating what should have been a really healthy diet.

As it turns out, it's better for me to eat a hamburger patty, french fries and ice cream than that complex, varied and Oh So Healthy diet I grew up with.

I found that quite depressing for a while. How could everything I believed about food for 40 years be so terribly wrong? How can a hot dog and potato chips be better for me than a peanut butter jelly sandwich?

Last year, I didn't even grow a garden. Really, what's the point? I'm not doing it this year, either. Yeah, I can still eat green beans and sweet corn, but it's not really worth the effort for just two items that I can get in decent condition frozen at the store. And I never could grow potatoes worth a darn.

I still try to eat healthy within my extreme limitations. The meat we use is grass fed and organic. The french fries we fry in olive oil. The rice is brown. The ice cream is all natural.

But my heart really isn't in it anymore. I was betrayed by eating "healthy." Well, maybe not betrayed... but for a while there a Weird Al song kept runnning through my head, "Every thing I know is WRONG!"

Now I'm hesitant to be sure that even histamine intolerance is the absolute, ultimate answer. My "faith" has been shot. But, however, this is the model that works best for me- so I'll stick with it for now.


You really nailed it, for me.

Yes, it's dealing with your reality vs. the accepted norm.

I was so sick and tired of doctors assuming I ate an unhealthy diet...when I know I ate a diet better than 75% of their patients.

And now - I'm better without grains, period. How many people agree with THAT one (especially doctors)??
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#11 lovegrov

 
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Posted 02 May 2012 - 06:43 AM

Wow...this is all so complicated...I'm new to this all and just starting my food diary...so overwhelming!


Just tio give you a little encouragement, the vast majority of people with celiac who I know personally do NOT have other food sensitivities to worry about, or if they do have any it's something pretty simple. Certainly, if you continue to have problems you should look into other possible food issues and I DO think it's important not to imagine that every time you feel bad gluten is the culprit, but I simply disagree with the notion that MOST people with celiac have multiple sensitivities.

richard
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#12 MariaOfColumbia

 
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Posted 02 May 2012 - 07:17 AM

I was so invested in the idea that I was gluten intolerant that when I started reacting to homemade yogurt half a year into it, I assumed that the dry milk I'd been adding to it was contaminated and I threw it out. A new box produced the same result, though, so it MUST be that the factory wasn't gluten free.

I did have plenty of reason to believe that gluten was the problem, though. There was the quieting of GI symptoms, the disapearance of joint pain... and most strange of all- my hair started growing in curly!

I've always had long wavy hair, but once I started eating gluten free, the new hairs grew in kinky! They still are, for that matter. I figure in about five years (seven years is the average hair life span, isn't it?) I'll have a whole new hair texture to deal with. That's not such a welcome change, but it IS an easy to see one. When I walk out into the wind now, the short kinky hairs blow free of the long wavy ones and poof up into a weird frizzy mound on the top of my head. <_<

However, more changes started upon escalating to histamine free eating. The most noticable is that I've apparently stopped producing ear wax. :blink: For 40 years, it's been my habit to clean my ear canals with a Q tip after showering (yeah, I know that's frowned upon nowadays, but I still do it.) About a month after going histamine free, I noticed that the Q tip always came out clean. I keep doing it, but it's always clean now. I don't know what to think about that one.

Also, I got my ability to digest lactose back. Going gluten free didn't do that, but going histamine free did! Woo hoo!

So many systems can be affected by this sort of thing. It constantly amazes me.
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#13 GFinDC

 
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Posted 02 May 2012 - 01:25 PM

Congrats on finding your way through the food jungle Maria. Sometimes an elimination diet can help with that. It really is kind of interesting how one person will react to one food and another will not at all. Seems we are just beginning to really learn about those reactions. Not that they are understood, but at least people now acknowledge they exist. Eventually the doctors will learn form us or go broke. Well, probably not, but they sure could stand to look at food a lot closer.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#14 dilettantesteph

 
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Posted 03 May 2012 - 04:28 AM

For the few of us that continue to have problems gluten free there are so many possibilities to consider. Let's not forget that low levels of gluten, even below 5 ppm, do cause problems for some of us. At least, that it what has allowed my son and I to recover.

Plus, the possibility of low levels bothering you is very easy to check, just eat only produce for a few days and see if you improve.

No matter what the other issues might be, a food/symptom journal can be extremely helpful. It has been invaluable to us.
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#15 MariaOfColumbia

 
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Posted 03 May 2012 - 07:41 AM

I've proved gluten isn't the issue with me by eating rye products without problem. Not only did I make and eat those rye biscuits as a test half a year ago... but my pancake/waffle recipe now has rye in it as well. And I eat that every day.

It was wheat that was and is the issue. One of them. I can eat a little bit of wheat, but not often and not daily. Whether that is due to histamine content of wheat or not- I really don't know or care.

I can't eat anything yeast raised or fermented though. Not in any quantity. OK, that's not quite true. My pancake recipe has a dab of buttermilk in it-- but it's obviously not enough to set me off.

From what I gather, histamine intolerance is kind of like a cup. You can only take so many histamines from the various sources (food's not the only one) and then when the cup fills and starts overflowing you have problems.

Anyone can get sick from histamine poisoning. Most people won't eating normal food. My "cup" is pretty small, and I have to watch food levels, allergen levels, and stress levels because all of those produce histamine which my body for some unknown reason cannot mop up quickly.

In fact, I've made it a policy to never risk eating anything risky when I'm feeling sniffly or my eyes are itchy. Everything has some histamine in it, and if I'm already at my max load and starting to feel it, it's best just to eat very safe food or skip a meal all together.
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