T.H.

Also, there's a good chance that you won't always be the only gluten free member of the family. Much easier to make the family gluten free after that!

Your doctor should have told you (but most don't) that if YOU are diagnosed, everyone in your family should now get tested, with or without symptoms (because the disease can be doing damage for a while before symptoms develop). And if they test negative, they are supposed to get tested periodically for the rest of their lives, like every 5 years or so, or if they ever develop symptoms.

Your siblings, children, and parents are in a category where 1 in 22 people have this disease. Your aunts/uncles, cousins, and granparents, it's 1 in 56.

Has anyone checked exactly what percentage the wheat ingredient accounts for against the weight/volume of the product, .00005 percent or 20PPM is considered gluten free (ie. it will not cause the villi to be damaged)

I know that the Gluten Free Watchdog got a couple samples of hygiene products with wheat ingredients and they tested at < 5ppm, as I recall. So for those, at least,
many Celiacs might be fine with using them.

However, 20 ppm IS enough to cause villi damage in some folks. The amount of gluten that can cause damage has been studied multiple times, but the studies do not universally agree on what amount is safe vs. what causes damage.

In fact, when the FDA looked at research and case studies, it concluded that a lot LESS than 20 ppm could cause damage in some celiacs.

In sum, these findings indicate that a less than 1 ppm level of gluten in foods is the level of exposure for individuals with celiac disease [Celiac Disease] on a GFD [Gluten Free Diet] that protects the most sensitive individuals with celiac disease and thus, also protects the most number of individuals with celiac disease from experiencing any detrimental health effects from extended to long-term exposure to gluten. (the FDA’s Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease, page 46)

And then they concluded that this would be far too difficult for the industry to meet, and that tests weren't accurate enough to be used industrially to confirm a 1 ppm standard, and therefore 20 ppm would be a better choice.

So while an extremely low amount of gluten might definitely not be an issue for many Celiacs, for some of us, like those here who react to lower levels of gluten, it can be a problem and cause actual intestinal damage.

I was happy to see that wine from barrels sealed with gluten were finally tested. There is also some information on wine, oak barrels, sealing barrels with wheat and how common it is.

You can find the information here: http://www.glutenfre...g/blog.php?id=8

The good news is that the two tested wines were <10 ppm on the Competetive R5 Eliza and <5 ppm with the sandwich Eliza. The testers used both tests because the Competetive R5 is aimed at detecting pieces of gluten, which the sandwich Eliza is not as good at. "...both the Food and Drug Administration and the TTB believe that currently there are no validated methods available to accurately assess the gluten content of fermented products. This is because the competitive R5 ELISA has not been formally validated in a multi-laboratory ring trial."

I figure even with the slight uncertainty, these test results may come as good news for folks who are fine with foods that have gluten at the above concentrations. It's not 100% yet until they get the test validated, but still, very nice to get the information. :-)

One possibility might be that your reaction that you consider a gluten reaction might actually be a combination of things you react to when they are together, or the gluten reaction is worse when you react to something else at the same time, or sometimes not even a gluten reaction at all.

Sulfite allergy is one thing you can check that actually sounds entirely possible, based on your experience. (http://holdthesulfites.com/ )

1. Sulfites are much more prevalent in foods in the USA than in Europe, so you'd run into them less over there. I know a lot of sulfite sensitive folks in Europe now and they have SO many fewer reactions than folks here in the States.

2. Sulfites very commonly show up in the same places as gluten, at least here in the USA. They can be used to bleach certain ingredients used in glutenous products, for example. For myself, it took me a while to separate sulfite reactions from gluten ones, because so often, the ingredient that caused me to react had BOTH sulfites and gluten. The sulfites, however, often wouldn't be listed on the label because they were part of the 'processing.' :-(

3. Massive headaches are a common symptom of sulfite allergies. I know for myself, and some others, sleep issues are part of my reaction, too.


If sulfites WERE an issue, wine would be one thing that makes you very sick feeling, as this has a high level of sulfites.



There are many other differences between the food supply in the USA and Europe's. From what I've read, they're using fewer pesticides, fewer GMO's, fewer of the nastier pesticide chemicals, and even sometimes different processing techniques that can result in different end-product components. One thing the latter applies to is dairy pasteurization, I understand. Two different ways to do it, and two different end products. Some people react to the end products in American processing, but not to those in European processing. Weird, huh?


Re: the gluten in Europe being different. Not different enough, I'm afraid. Celiac Disease is as prevalent in Europe as it is here and they have to avoid wheat just like we do here, even in Italy. I have Celiac relatives in Europe and they have to avoid gluten, too. My American father gets just as sick from contamination there as he does here, even with Italian wheat. No difference in reactions at all.

If you truly did not get sick when eating gluten and wheat over there, but do you do here, you might want to consider whether you received an accurate diagnosis. Tests aren't perfect, after all. It could be an ingredient or additive that is commonly found WITH gluten/wheat that is a problem for you, instead. Although that's just speculation, of course. :-)

If your mom is getting gluten, it's also possible that this could be contributing to her anxiety. Many of us have panic attacks, heightened anxiety or sudden depression as a reaction to gluten.


For myself, my emotional symptoms are that everything starts to feel more stressful, more upsetting. My frustration tolerance takes a nosedive, and my ability to concentrate and think clearly crashes. If I get it continually, I'll have a long bout of severe depression until I get the gluten out of my system.


My daughter has full blown panic attacks that will last hours, on and off for days after she's been glutened.

So while your mother's anxiety may be extreme, it may actually have a physical cause as opposed to a metnally induced physical cause (psychosomatic, in other words), if that makes sense?

I'm assuming the statement was made with regards to foods sold in the USA, because we have no regulations in effect yet to regulate the gluten free label. It is completely legal to make a gluten free claim with different levels of rigor, some of which are not rigorous enough.

Companies that make the claim that a product is gluten free, but do not test their products for gluten so cannot actually confirm that their products ARE gluten free, are not uncommon. Testing standards can differ widely. Some companies test every batch, some test batches periodically, some only test batches when the product is first being produced, some test ingredients going in and don't test the final product at all - it's all over the map.

If there is no testing or only periodic testing, contaminated batches can fall through the cracks and make us sick. Or sometimes it is 'naturally' gluten free goods that contain gluten above the 20 ppm that most people consider a gluten free standard.

Although to be fair, I've noticed more companies start testing their products over the last year or so, so that's good news.

However, as you wanted some examples, here's just a couple. :-)

Food for Life tortillas - some lots tested at an independent lab show above 20 ppm of gluten. The gal who had these tested made sure to contact the company so that they could hopefully correct whatever problem was causing the contamination, so perhaps that has been addressed now. The original blog posting regarding this has a broken link, but here is a link to another blog reporting on it: http://glutenfreemom...-tortillas.html


In the above link, it also mentions a study done on naturally gluten free grains and flours, where about 32% were above the 20 ppm standard. The original article for that is no longer up on the web, either, sadly. What I do remember is that some of the flours tested were significantly above 20 ppm. One soy flour was over 2,000 ppm of gluten. 0.0 The study itself declined to mention which brands were tested, however, so we're unable to locate those particular brands.


In September, 2011, when I last contacted Boulder Canyon Chips, they tested the lines for their gluten-free potato chips during a certification period to ensure they were gluten free. After that, the chips are never tested again to ensure that they remained gluten free and uncontaminated unless there was a change in ingredients. Again, this was a little over a year ago, so that may have changed by now.

That's just a few examples, but there are others if you look. Most of the big name companies seem to be testing at least periodically now, that I know of.

However, another potential issue for those who are more sensitive is tracking down the original information for what is 'gluten free.' A great example of this is many of the Frito Lay chips - which I know many here can't eat, but it's a good example so I'll use it.

On a lot of websites with lists of gluten-free chips, they will list a whole slew of Frito Lay chips, like certain varieties of Doritos, Cheetos, Funyuns, and so on. If you hunt down the website, however, you find out that Frito Lay has not made the claim that these chips are gluten-free. Frito Lay has a few chips that they test for gluten, and then a much larger group of chips that they do not add gluten to on purpose, but do not test and do not have them in a situation to keep them as free from gluten contamination.

On their site (http://www.fritolay....ngredients.html ) they list a lot of their chips in the 'no gluten ingredients' category. But this gets passed around the webosphere and becomes 'gluten free' when even the company isn't making the claim.


Also, sometimes on the sensitive section here, people get frustrated because we'd love a reality where 'gluten free' meant '0 ppm of gluten.' That's not the reality, and it's not something that can even BE a reality at the present time and with the present level of technology. But for some folks who react to less than 20 ppm in quantities they would eat during the average day, the gluten free standard doesn't adequately protect their health.


Oh, for the latter? Even the FDA has recognized that the 20 ppm standard is a potential issue for some Celiacs. In the FDA’s Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease, on page 46, it says:

In sum, these findings indicate that a less than 1 ppm level of gluten in foods is the level of exposure for individuals with celiac disease[celiac disease] on a GFD[gluten free diet] that protects the most sensitive individuals with celiac disease and thus, also protects the most number of individuals with celiac disease from experiencing any detrimental health effects from extended to long-term exposure to gluten.

So, for some of these folks, a 20 ppm standard is a LOT higher than is safe for them, you know?

As anyone reading the 'vapors' post recently noticed, there's something that comes up in the super-sensitive section periodically. Someone mentions a reaction that many don't think is possible, and during the course of the discussion of 'possible' and 'not possible,' the idea that the original poster may be having psychosomatic reactions comes up. And the poster is usually told that this is likely the problem by at least a few folks.

And things seem to get a bit heated after that.

This has happened often enough in this section that I thought it might be appropriate to actually discuss this as an issue in and of itself. Because some of us don't find it offensive, and some find it extremely so. I'm hoping this might be a place we can open a dialogue about this, without it becoming personal, or about a specific problem or situation. :-)


I'll be upfront: I would not tell someone that I thought their reactions were psychosomatic. Even if I thought they were, I wouldn't. So that's the side I'm going to come from. I'm sure there will be plenty of folks to further the discussion on either side, if there's interest.


In a pretty large nutshell, here is why I would not tell someone that their reactions are likely psychosomatic:


If someone claims that they had a reaction and someone else doesn't believe that this reaction is possible, I don't think anyone has an issue about that, generally. We can disagree about whether a physical reaction is possible or not, or about how we think Celiac Disease works, or what can cause a reaction.

Responding with our disbelief is a statement of our opinion about a physical reality. 'I don't think this response is possible in this situation. I don't think Celiac Disease works that way. I don't think gluten is present in this place, or if it is, I don't think it would be in great enough amounts to cause a reaction.' We can even provide research, facts, anecdotes, whatever, to back up our opinions.

And that? That's not offensive. It can lead to some major disagreements, yeah, but it's opinion based on our own experiences and research. It can be polite, and specific, and often helpful to all of us reading it.



However, when someone is speaking about their reaction, we know only a sliver of information about the original poster. We don't know their personality, all the details about their situation, or how their mind works. We may have some information to make an informed opinion about a situation with regards to the gluten, but we don't have enough information to make an informed opinion about them. So if we're giving an opinion about this person's mental health and how that is probably affecting their physical health? It suddenly becomes very personal.

If we tell someone that they are having a psychosomatic reaction, we're stating a strong opinion about something we know nothing about: someone else and their mind. If a person were to write about how nervous and worried they are all the time and that they are looking for help in coping, I would think a discussion about how psychosomatic reactions work would be appropriate. But I really don't see how commenting on someone's mental health is warranted when they are merely sharing an observation about their own experiences, which seems the most common time for this comment to pop up.


I imagine many of us have had this exact, same label applied to us before we were diagnosed. When so many of us had symptoms that didn't match up to what a doctor was testing for and they decided we must be having psychosomatic symptoms. And in that situation, we might have come up some odd theories to try and explain our symptoms. We might have been completely wrong. We might have figured some of it out, but not all. But being incorrect about what caused our symptoms did NOT mean that our symptoms were psychosomatic.

When a doctor, knowing nothing about us or how our minds work, makes this assumption, it feels like a dismissal of our pain AND our ability to observe and reason as we try to solve why we have this pain in the first place. It's not their intention, obviously, but that's what the patient is left with.

It feels no less unpleasant when it happens in a group, however well-intentioned the members may be. Disagreeing with a person's conclusions is one thing. Commenting on the state of their mind during the course of a disagreement is quite different.

I don't know that there have been any studies on gluten particles specifically, but there have been studies on various allergens and whether particles are present in the air after processes such as boiling, frying, etc.... So far, the evidence is that there are enough particulates aerosolized by cooking processes that an allergic person can respond.

Again, this is looking at those with allergies, not Celiac Disease. However, allergies are a reaction to proteins, and gluten involves proteins, so I'm just looking at these as examples of whether or not proteins can become airborne by some process of cooking.

I'll list a couple examples. One is primarily industrial, so not as useful to this discussion. I include it merely because it briefly discusses the fact that aerosolization during the cooking process is a known issue. The second is a study with allergic individuals in a closed room where food was cooked. That may be more relevant.

This doesn't address any issues about quantities released into the air vs. quantities required for most Celiacs to react, but it does address the possibility of aerosolization.

http://www.clinicalm...ontent/7/1/4#B3
"Processing of a food, such as boiling, steaming, or frying, can also release significant quantities of particulates into the air. This aerosolization has also been identified as a potential high risk factor for sensitization by inhalation..."

http://www.ncbi.nlm....pubmed/12121190
From the Abstract:
"Subjects were exposed for 20 min to the aerosolized form of the allergen and the symptoms and the lung function were monitored. Aerosolization was achieved by cooking the food in a small room. Where possible challenges were double-blinded....The implicated foods were fish, chickpea, milk, egg or buckwheat...Our data demonstrates that, as in the case of other aeroallergens, inhaled food allergens can produce both early- and late-phase asthmatic responses..."



Oh, and Irishheart? Just because you mentioned feeling sick from strong perfumes.:-) Am I recalling right that you have issues with sulfites? If that's correct, you might be interested to know that a lot of sulfite sensitive folks react to perfumes. Some have severe reactions, but most I've spoken to say their reactions are mild, often headaches, dizziness or nausea.

I've heard a lot of anecdotal reports re: sulfites in perfumes, but the closest to a 'source' I've found is 'A Consumer's Dictionary of Cosmetic Ingredients,' which said that sodium metabisulfite is used as an antifermentative in perfumes, so maybe your reaction isn't as psychosomatic as you may have thought.

Shauna

*hugs*

I'd second Takala in getting the children tested. If they are negative, some experts recommend testing them every 2-5 years, for the rest of their lives, or if they start developing symptoms. This disease can trigger at any time, and symptoms may show up only after damage it being done.

You also may want to see how many of your family members you can get tested, too. Siblings, parents, and children are now 10 times more likely to have this disease, now that the diagnosis is in the family. Cousins, aunts, and uncles are about 4-5 times more likely to have this disease.

Re: the anger - I personally have been using to try and help other people. I sent letters to all the doctors that missed this. Told them what my symptoms were that they saw me for, and told them what it actually was. It might not make a difference, but just maybe they'll see someone in the future with those same symptoms and they'll remember and test them. And it certainly won't hurt.

I also share this with others if they mention having similar symptoms, sometimes even if they don't, and there have been folks it has definitely helped who now have a chance at getting healthy, just like me. One of these was a mother whose infant was reacting, and gluten turned out to be the reason. Docs totally missed it.

We can't get back those years, but I like to think that our outrage and passion over this issue may be able to get those years for others, and make something good come out of this.

Wow That's crazy!!! Didn't know that so thanks so so much for telling me. I'm scared now does anyone else here have severe allergies besides gluten/wheat?? How do you cope??

First, take a deep breath. You can do this. :-)

You don't have to be terrified, but a little fear is normal. Who wouldn't be afraid when they have something like this come into their lives? It's scary to think that just getting something in your mouth can be that dangerous.

What you don't have to do is let it cripple you. It's there, yes. But...so is the danger of being hit by a car, or getting food poisoning, or falling off a cliff. We take precautions to avoid those risks, right? Like look both ways before you cross the street, keep food in the fridge, don't get too close to the edge of the cliff. That's all you have to do now: learn what precautions you need to take for THIS new risk in your life, and do that. The more you learn about what precautions you need to take, the better chance you have of being healthy and happy.

The main change you make when you develop a reaction that can kill is that you have to be much more aware of your actions and the world around you now. It feels scarier at first, when you're not used to it, but - well, pardon yet another analogy - I kind of think of living with an allergy like learning to walk on the balance beam.

First time, you might be scared you'll fall off. But after a while you get used to it, get better at paying attention to your balance, and you can do it smoothly and you stop being afraid you're going to fall. But you'll never be able to do it without a part of you concentrating, because you will never be able to get off this balance beam. The risk of falling will always be there.

Second change you'll need to make, now that you've done some breathing ;-), is start thinking differently about how you interact with the world.

There is a habit you will need to consciously develop now: nothing touches the mouth. You don't touch your mouth with your hand, or chew on your nail, or lick your finger if you prick it on something or bite a pen or pencil, none of that, unless the item in question has been washed with soap that you know it is safe.

And you also don't touch your mouth to anything else, like kissing someone's cheek or their hair, unless they have washed it with something safe for you. They can have hair products, lotions, after shave, all sorts of things that you'll need to be aware of.

It is hard to do this, because we normally touch our face and mouth constantly, even when we're not aware that we're doing it. But it's possible. It'll just take work. My daughter was a couple years younger than you when she started having issues and after numerous reactions, she decided to wear cotton gloves for a couple months - the feeling of the cotton on her face would remind her what she was doing so that she was more aware of it until she didn't do it anymore.

I have a reaction to an inhaled substance, too, so when we went out I wore a mask like a dental hygienist, which helped me become more aware of attempts to touch my mouth/face.

You may want to talk to your folks and see about getting wheat and dairy free lotion, soap, shampoo and so on for the family. For yourself, at the very least. Even if you are not eating your conditioner, say, it's nice to know that your own hair is not posing a risk to your life if you accidentally get it in your mouth.

I'm sorry you have to cope with this; always better when we don't have to. But you can do this. Take support from your family, ask for help researching where wheat and dairy may be in your food and other supplies, and you can totally do this. :-)

I've come to think that we each have our own, individual optimal diets. Whatever strengths and weaknesses our genetics gifted us with, whatever injuries we've sustained in life, whatever we're exposed to in our environments - it's all going to have an effect on what diet does best with us, IMO.

The gluten free diet is a clear one for all us Celiacs, but the grain free one, not as much.

However, we're all competent adults, and usually ones who pay attention to our health because we've had to do so. It seems to me that some people do just fine with grains, some people are knocked flat by 'em, and they are typically aware enough of their own bodies to tell the difference, you know?

Whether it's the grains themselves, or GMO issues, or pesticides, or whatever, if it works for some people to avoid it, more power to 'em. God knows I've struggled enough to figure out my ridiculous body that I'm always happy to support anyone who's found the answer to their own health issues.

As for myself, if I eat grains, I'm sick. My kids' health issues are much better when they have a low-to-no grain diet. Previously, when eating grains, I had vitamin deficiencies and other medical problems that wouldn't resolve until I made some major dietary changes, including going grain free.

I've been grain free for about 2 1/2 years now. No grains, no grain derivatives (even corn derivatives like cornstarch, citric acid, xanthan gum, that sort of thing). I've tried to find ones I can eat, but so far, they all make me sick, so they're out of here.

Paleo, primal, and raw foods diet blogs have been a good source of grain-free recipes, along with some of the SCD and GAPS diets blogs.

What I've learned doing this for a couple years:
1. The extras make a huge difference. I have a limited diet, which gets REALLY boring after a while. So since I can't change my limitations, I now make sauces, condiments, dips, spreads, veggie-based 'croutons' - anything to change things up, so that it doesn't feel like I'm only eating that one same food. :-)

2. Oil + nuts + an herb = a pesto sauce. You can add cheese if you have dairy, but playing around with herbs and oils and nuts (or even oil and herbs) can get you some great combinations. You can use some veggies in the mix, too. Asparagus pesto, basil and lemon thyme with pine nuts, broccoli and walnuts, oregano and hazelnuts. Lots of good stuff.

3. Most veggies can be steamed/boiled/roasted and blended up in the blender to make the base for a sauce or dip for meat, beans, even other veggies. Or a base for a soup. Roasted eggplant and roasted onion go great together, for example.

4. An herb garden is a life-saver. About 6 months into the diet, I started an herb garden. It's the best thing I've ever did with re: to food. It's usually faster to buy a small herb plant, but you'll get more bang for your buck if you buy seeds. I buy any herb that is edible, even if I don't recognize it and have to go look it up once I get home, but I don't think there's been an herb I've regretted purchasing - they all taste good with something, and oftentimes it's something I never ate before so it's worth exploring.

5. Some nice veggie noodles: get a julienne peeler and peel a zucchini, yellow squash, carrot, etc... length-wise until you have a lot of little noodle-like strips. Let them sit in open air (usually in the fridge) for a few hours until they are limp. Then boil them briefly and you have veggie noodles. I always thought the carrot ones would go well in chicken soup. :-)

6. Comfort food helps. I found one or two foods I really, really like, and I make extra whenever I make them so I can have a small store in the freezer. If I'm feeling down, or the diet is feeling really frustrating, having that 'nice' food to break out is really nice for my mood. I think it helps stick to the diet when your having a crummy day, you know?

7. Keeping track of nutrients has been important for me as well. Without the grains, it's sometimes hard to make sure I get enough of the nutrients that are plentiful in grains, so it's something to be aware of.

So far, this diet has worked for me quite well. Hope it works well for you, too. :-)

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. 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. 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.

If a person is symptomatic and had negative testing on re-test, it most likely is another problem not related to gluten ingestion. It may not be so useful in those who do not have an official diagnosis, for obvious reasons. If these tests were not reliable for re-testing diagnosed Celiacs, they would not be used.

http://www.ncbi.nlm....pubmed/15185855

"Seronegative celiac disease occurs. Endomysial antibody positivity correlates with more severe villous atrophy and not mode of presentation of celiac disease. Serologic tests, in clinical practice, lack the sensitivity reported in the literature."

I made the exact opposite mistake as you. I assumed I was reacting to traces of gluten and finally figured out I'm probably getting sick because of a dairy sensitivity.

SO hard to figure out this stuff sometimes, isn't it? I swear, it would be so much easier if we had, say, little Star Trek medical scanners we could use whenever we have some kind of reaction so we could know what was actually going on. I thought for the longest time that my gluten reaction was an allergy of some kind and my allergies were my gluten reaction. Then realized that it should be flipped around. And even now, I'm thinking a couple of the issues I thought were allergies might actually be sulfites.

I think one of the more frustrating challenges we celiacs have to deal with are those 'what the heck' reactions, the ones where we can't see why we're reacting, or what it's from. Is it an allergen, sulfites, chemicals, gluten? And WHAT got us? And how long was the delay before we reacted?

When you add in super-sensitivity, it makes it even more of a challenge. And I think that applies whether it's super-sensitivity to gluten or anything else (like an allergen). When a reaction is not simply to known ingredients but can involve incidental ingredients or cc, it's just another layer of information that one has to sort through while trying to figure out what is safe and what is not. And what the reasons are for reaction X vs. reaction Y vs. reaction Z, and whether it's to the same ingredient/chemical or not.

Sometimes I think that by the end of all of this, we each have more than earned a PhD in 'how our bodies work!'

When I reacted to labeled gluten-free foods, I didn't automatically assume that it was from gluten. There are other ingredients in most gluten-free processed foods. It is always the smart route to investigate all possible sources of a reaction.

I don't think anyone would disagree with your statement that it's a smart route to investigate all sources of a reaction. From what I've seen, most people here do eventually check out pretty much everything they can think of, and keep some in mind just in case it might prove to be an issue later. I think it's normal in the beginning to have that moment of thinking everything might be gluten, but it rarely lasts. People seem to expand their search pretty quickly to other foods and other physical conditions as possible problems. At least that's been my experience

But sometimes, things come back to gluten because, well, low level gluten cc is still a part of 'everything' that may need to be investigated. I don't think most here automatically assumes a reaction is from gluten until they've looked at lots of possibilities. But after some research into their own reactions and what they've contacted and consumed, sometimes gluten seems to be the best fit. And even with that, there's always the possibility that it could be something else that happens to coincide with the avoided gluten. I know that's something I keep an eye out for all the time, just in case there's something I'm unaware of that might change a previous conclusion.

With regards to obsessing....to be perfectly honest, it happens.

I would agree - it can happen. I think one problem is that none of us know when it actually is happening unless we know a lot more about someone's life than we typically do in the limited venue of an online forum. We don't usually know a lot about someone's medical history, their reactions, or their full diet. We don't usually know even a large part of what they explore OTHER than gluten, or what methods they've used to determine what they react to and why.

And without that, or at least asking about that, I don't see how we can make an accurate assessment of someone's choices or their mental health.