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Diagnosing Food Intolerances


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#1 cavernio

 
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Posted 28 March 2012 - 08:23 AM

How do you do it? How do you figure it out? I know I'm a celiac because I had symptoms that when I searched for them online, made me get a doctor's diagnosis for it. But I never noticed anything from wheat or flour itself.
The biggest thing I've ever noticed for me is that a ton of sugar (more than one serving of dessert amount of sugar/more than a glass of pop/day) makes me me bloated. And I avoided bananas and artificial sweeteners because I got a bad, bad migraine a couple of times after eating either. But even for both of those, I know that I don't always get the migraines. Do doctors or other professionals help you discern what you have sensitivities to?
I can understand diagnosing things that you don't eat often, like if you ate pineapple and you suddenly feel ill when you eat pineapple, like, once month or even once a week. But what about something like corn, or rice, or soy that you probably eat in varying amounts from various foods on a regularly basis?
Do you start to test yourself out on certain foods because you will varying feel really shitty like I did with bananas and artificial sweeteners? Or do you just feel bad all the time?
If I had a food sensitivity that doesn't make me feel super terrible, but just kinda meh, I would never know. Do those types of sensitivities even happen? How long must you go off a food before feeling better? If it's a long time, like a month or more, how would you ever know? What if by stopping a food you're actually eating more of something else that has a lot of something you're deficient in, and that's why you're feeling better?
What about food interactions with other foods. Is seems very plausible that one food by itself might be fine and another food by itself might be fine, but together is when they get bad. Does anyone ever test themselves for that? Would you ever know?
Has anyone just up and started an elimination diet just because? Were you surprised by something?

The whole food sensitivity thing just seems so uncertain! Especially if your sensitivity might involve something that presents itself psychologically rather than physically. I mean, even some physical symptoms might be hard to diagnose, like a mild headache. Something like hives or problems breathing, it's a lot more obvious when you should avoid something.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

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#2 pricklypear1971

 
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Posted 28 March 2012 - 09:09 AM

Yep. It's hard to figure out. I never would have guessed gluten caused my rash because it was never obvious - I never ate a piece of bread and noticed my rash flare. Someone had to tell me to drop gluten based on my ai history.

I think the most common way to figure out an intolerance is to do an elimination diet - a month or so without a food, and see what happens.

Funny enough, it isn't even obvious when you get sick. I've started getting sick from eating Andes mints and Junior Mints. You know what I ate a ton of first going gluten-free??? Freaking Junior Mints. Never made me sick ONCE. Know what they have in common?? Lots. Know what they have that's unique that I don't eat in other places?? Apparently nothing. Know the only commonality I can find??? They're both made by Tootsie Roll in gluten-free factories.
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#3 everything-free

 
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Posted 28 March 2012 - 11:18 AM

The whole food intolerance thing is so confusing. It's very difficult even to know where to begin when trying to figure out what is wrong. The best idea is to go to your doctor and tell them your symptoms. Have blood tests and anything else they recommend first to rule out any other major problems and then start from there.

I have IBS, lactose and gluten intolerance. Unfortunately, even on a gluten and lactose free diet for almost ten months I have never fully been rid of my symptoms. I am on an elimination diet right now and it is difficult. To tell you the truth, I miss the foods that I was able to eat a few weeks ago more than the normal one you would miss when you're just gluten and lactose free. And a few times throughout this elimination diet I have had IBS reactions (that are VERY similar to when I eat something I can't), so it is hard to tell if it was a new food or not. So frustrating. I was even told about 9 months ago that I had a slight allergy to potatoes from a skin prick test. No one believes that I could be allergic to them, but since they are in A LOT of gluten free products I have been avoiding them since the test "just in case". I use to eat potatoes ALL the time before that allergy test. I'll be testing the potatoes in a few days and I'm pretty excited to have them again. Just hope I don't get sick!

It is a very long and hard road but if you take the time to figure it out you will be better off in the long run! Good luck!
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#4 Bubba's Mom

 
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Posted 28 March 2012 - 01:13 PM

I started out pretty sick and reacting to everything I ate. I got DXed with Celiac and cut out gluten. I still didn't feel very good. I was told by someone here to keep a log of everything I ate, along with noting any symptoms I had, because many food reactions are delayed.

I was eating a fairly limited diet just because I wasn't hungry and felt bad. On some days I felt worse than others. By going back through my log I was able to piece together that some foods made me nauseated, some made me vomit, some made me hyper, etc. I'd drop something for a while if I reacted several times. Then I'd try it again. If I reacted again, I knew It was best to not eat it.

I also paid extra attention to the top allergens. Once I found that soy made me sick I had to look for it in everything, which meant a lot of the supplements I was taking were bad for me. Getting rid of every trace made a big difference. It's a long slow process.
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#5 cavernio

 
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Posted 28 March 2012 - 05:11 PM

I really think I should be testing myself for other food sensitivities at this point by doing elimination diets. But that's a hugely daunting task. I have very little willpower-it comes along with the lack of motivation and energy and enjoyment that are all typical of depression. It's especially bad because food is one of the few things I will/have almost always enjoyed, and making myself cut out certain foods feels like chipping away at my last pleasure in life or something.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#6 Juliebove

 
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Posted 28 March 2012 - 08:35 PM

My daughter and I had the food intolerance hair test done. We changed our diets and now all of my mystery ailments are cleared up.
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#7 Lori2

 
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Posted 29 March 2012 - 06:11 PM

My daughter and I had the food intolerance hair test done. We changed our diets and now all of my mystery ailments are cleared up.

Do you have a link for information on a hair test? It sounds a little questionable, but then, so do a lot of other things.
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#8 Juliebove

 
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Posted 29 March 2012 - 10:38 PM

http://www.testyourintoleranceusa.com/
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#9 T.H.

 
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Posted 02 April 2012 - 06:37 PM

The whole food sensitivity thing just seems so uncertain!


Your last statement hit the nail on the head, IMO. It's really, really uncertain, unless you happen to have just the right reaction to the right food and get just the right test (if there even IS a test for your reaction!). What you're reacting to can be affected by so many factors, and our food supply comes into contact with so many things besides that, it's a whirling dervish of confusion, I think.


So, re: your questions...this is gonna be long, LOL

>>How do you do it? How do you figure it out?

My first rule of thumb is to go into the whole situation open to new information. If I think I have figured out something, I jot it down, look into it, adjust my life as though it's true if if seems to work for me, but keep an open mind because it's always possible that I might be reacting to something else that happens to have a connection.

As an example, when I went gluten free I kept getting headaches from strawberries. I figured I was reacting to strawberries. Then I tried strawberries from my own yard and got no headaches. So I did research and found out that strawberries frequently have contact with some pesticides that can cause headaches. I was reacting to other produce that contacted this pesticide. I figured it was likely the pesticides, because pesticide free strawberries were doing well for me. Then later I figured out I had a sulfur and sulfite sensitivity and this was frequently used on the same farms that were using the pesticides.

In my own experience, it was much easier to figure out foods that were making me sick than to figure out what ABOUT the food was making me sick. And while that's a bit frustrating, it can still be enough to keep me well. Strawberries from these farms made me sick, so I avoided them. It's annoying not to know WHY they are making me sick, concretely, but if knowing to avoid them is all I get, it's still worth it to feel better, you know?

So, how do I do it, in general?

I ended up (almost by accident) dropping my foods to almost nothing. I was very sick and ate less than 10 foods for months. Even some salt brands made me sick. :blink: Every time I tried to eat new foods, I would get sick again. What made the biggest impact for me was discovering the world of higher sensitivity. Sort of like those who are lactose intolerant and avoid major dairy vs. those with severe dairy allergies who have to avoid the smallest dairy cc from anywhere.

So I started a food journal and I introduced one food at a time. When I tried a new food, I started keeping track of more than just the name. I kept track of amounts, in case I had an amount-dependent reaction. I kept track of brands and farms, in case I was reacting to a contaminant due to processing or pesticides, etc... I tried to treat it like a science experiment, essentially. And I did find connections between certain brands and certain reactions, so that helped narrow things down.

In the end, I found that if I found farms that didn't use certain practices or pesticides, I could eat a lot more things. I still don't have all the answers, but I feel a lot better and can eat more without getting sick, so I count it a win, still, at this point. :-)



>>Do you start to test yourself out on certain foods because you will varying feel really shitty like I did with bananas and artificial sweeteners? Or do you just feel bad all the time?

When I went gluten free is when I really started reacting to things and I just felt horrible. I stopped eating for a few days because I felt so bad. And that's when I started feeling better. Eat food, felt bad, stopped eating, felt better. So I figured out pretty quick that food was doing it and I just carefully added in a few things, keeping track. That's how I ended up with a few safe foods. But it was literally one food at a time. No sauces, no salt, no oils, just one plain food at a time.

I think for people with multiple issues, that can be easier than eliminating one food at a time, because if you have more than one problem, you'll never feel good, you know?

For my children, we eliminated the 8 major allergens. Doing that, we cut down on some other foods that were a problem, but when we added them back in, it showed up very clearly as a problem.


>>>If I had a food sensitivity that doesn't make me feel super terrible, but just kinda meh, I would never know. Do those types of sensitivities even happen?


Oh yeah, they totally do. They are really hard to catch. I've had a couple that I only caught because I was doing a food journal and the 5th, 6th time it happened I noticed a pattern of 'meh' that was popping up periodically and started looking to see if there was a reason and found the reason. The hardest are the ones that build up. I have a few things I can have once day, but two or three days in a row and I'm in trouble. :-(


>>>How long must you go off a food before feeling better? If it's a long time, like a month or more, how would you ever know?

It depends on what the issue is. If it's inflammation, it can take a while. If it's gut, it can be immediate or it can be something that will take weeks to heal. If it's neurological it can take weeks or months. I think for these, staying off a food for at least a month or more before reintroducing would be necessary.


>>>What if by stopping a food you're actually eating more of something else that has a lot of something you're deficient in, and that's why you're feeling better?

Something close to this has actually happened to me. And frankly, it's just tricky. Sometimes you just can't figure it out. There was something I ate that gave me a certain vitamin but also had something I reacted to in it. When I don't get that vitamin, I can't make a particular enzyme and so I react to OTHER things. So it was one reaction eating that thing, or another reaction not eating that thing. I had to research and keep track of what I ate and how I reacted and research the foods and reactions some more. Finally got tested for the vitamin and that helped, at least, to confirm that I was low in it. And then the rest started falling into place. These sorts of things, really, it'll be confusing and challenging. I think a doctor or two to work with can be invaluable, if you can find some that will listen and work with you.

Usually if I run into something tricky, I try to figure out what else might confirm or disprove my hypothesis. Like, I was thinking I reacted to sulfites with headaches. So I looked around and found out you can get pure sulfites at brewery stores. I made a low concentration sulfite solution in water and did a blind test with it. The water with sulfites gave me a massive headache, normal water didn't.

If I thought I was reacting to, oh, apples, now I try to find the purest source for apples that I can find, like grow it myself or get one from a farm that doesn't spray or use pesticides. I try to keep my diet absolutely the same a few days before I eat the apple, when I eat the apple, and for a few days afterward, so that nothing else is affecting it. That helps a little, at least.



>>What about food interactions with other foods. Is seems very plausible that one food by itself might be fine and another food by itself might be fine, but together is when they get bad. Does anyone ever test themselves for that? Would you ever know?


According to my allergist, this is just beginning to be studied, and they are finding evidence of even anaphylactic reactions that happen this way. Not much known about it. Seems like something you'd simply have to keep in mind when keeping a food journal, I imagine. I haven't tested myself for this, but as an example of the 'weird' factor, that whole sulfur thing of mine? It's amount based. And one of the things that increases my sulfur load is sulfur dioxide in car exhaust. :huh: When I would go to visit one friend who lives in a big city near a large highway, I would always get really sick when I ate. I could eat the exact same things at my house later in the week with no issue.

Now that I know about the sulfur thing, I've been trying to avoid any foods that are naturally high in sulfur while visiting, and that has helped immensely. But I would never have figured it out if not for a random blog posting that put me on the right trail.


I guess in the end, the main answer is to not give up until you feel all the way better, because there really does seem to be a reason for everything, we just don't know what it is, yet. I have at least one day a week where I just browse the internet looking for more in depth information about what's going on in my life. I plan to do that until I know exactly what is going on, which is not quite yet. I screw up plenty enough, though, LOL. I get sick of my foods and eat something I know I react to just a little, and feel like crap and go back to totally safe foods, but it's a continuing, slow, grinding search for good health.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive





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