Food Intolerances and Allergies.

i went into anaphalactic (spelling?) shock.

the allergist (via 1000 needles in my back) at the hospital figured out it was shellfish. and about 100 other things, but the shellfish that triggered it.

i dont have asthma or any other health issues.

nataliedolan82 wrote: »

Anyone had any experience of having food intolerances or food allergies?

What did you do to diagnose or identify them?

This information helped me a LOT - from a great allergist.
There are some foods that seem to have more accurate readings on allergy prick tests. There are some that have more accurate readings on blood tests. There are some that have more accurate readings on patch testing (often done on children - patches left on skin for I think 2 days or so). Food elimination can be useful, but won't tell you if something is an intolerance or an allergy, and you will need to learn a lot about your food to figure it all out (afterward).

And there are many, many more that allergists just don't know. Because very, very, VERY few allergens are actually ever studied. The big 8 are studied (peanut, tree nut, dairy, soy, eggs, shellfish, fish, wheat) in the USA. Peanuts are the most most studied, last I read. But many allergens are just assumed to pretty much like the big 8...and they may not.

And allergists are finding things now like some allergens that a person only reacts to if they eat it WITH another specific allergen at the same time. And they have no idea how that works. My allergist was newly out of school, and had specialized in really weird allergies- which I had - so he was a font of information.

Unfortunately, most allergists are not up to date, because a lot of information is pretty new - most that I've seen couldn't, for example, even tell you which foods test better on which test (the ones that we know of, anyway).

Although my allergist has said that if you do not get a physical reaction that is noticeable, like hives or a skin rash? Prick tests are unlikely to develop a rash either and will not be all that helpful (in his opinion).


- Blood tests can be more helpful for those, the ones that test IgE and IgG for a long list of specific foods. However, these have higher false positives. On the other hand...it's pretty darn easy to drop the foods in the 'bad' list, no matter how low a positive reading there is, and then after a few weeks, do some trials to see if they do make you react, or if there is no difference when you eat them, you know? Just costs some work on your part, and most of us who feel super crappy are willing to do that, yeah?

- elimination diets, IMHO, if you are really good about them, can make a massive difference. This is what I did, on top of the blood test (and prick tests - which didn't react even with foods that make me have problems breathing after ingestion).

While I did an extreme elimination diet, an easier one my kids did was to drop natural and artificial dyes, preservatives, and the top 8 allergens, but drop ALL of what could contain them. So if it could be contaminated (like, processed on the same line as), we didn't eat it - which included a lot of dried fruit and dried beans, actually, which are processed on lines that process wheat. If a food was derived from one of the big 8 allergens, we didn't eat it. Then we kept a journal of what we ate, and how we felt, through the whole thing.

So we ended up with a lot of home made food that was free from most manmade ingredients, lots of fruits and veg. We did this diet for at least 4 weeks, then slowly started adding foods in, on ingredient at a time. The rule was to start with a tiny amount first, wait a day and see how you do. Then, if no reaction, have a normal serving size next, wait a day and see how you do. Then, if no reaction, gorge on that sucker, and see how you do.

If there was a reaction, we were to wait 48 hours AFTER the reaction was no longer occurring (headaches, hives, whatever was going on) before we could trial another food.

After having done a few elimination diets now, and I now do this as well:
1. Try to arrange recipes ahead of time that will work, one week's worth, so you aren't overwhelmed with trying to figure out what the heck to make on so fewer foods.
2. Try to arrange the week's meals so that you have one set of foods one day, and then a completely different set of foods the next day. This was so that if we reacted, we were never having the same food all the time, so there might be pauses between reactions that made it easier to track. This includes basics, like salt or oil. Even salt has stuff on it, these days. For example, some people are allergic to the carrier for the iodine on iodized salt, even though that is not on the label. Some, like myself, react to the bleaching agent used to make salt white. Again, that's not on the label. So maybe one could have white, iodized salt one day, and some non-bleached sea salt the next day, stuff like that, you know?
3. brand matters - if you are reacting to something that is contaminating a product made on an equipment line, it may be contaminating other products made on the same line. This happened to me with a few oils I had, that were all contaminated with one of my allergens.
4. After you're done with your initial eliminating, if you have found some patterns? that's when it's time to start doing research. There are a lot of similar contaminants or processing agents (or even components in) used in many foods that don't have to be labeled, so you can actually have, say, one allergen, but multiple foods that seem to have no correlation, but actually all contain that allergen.

As an example - you could end up with salt, pistachios, lime juice, coconut, and potatoes as being bad, and what they all have in common is that sulfites are used in these products (as a bleaching agent, preserving agent, or anti-oxidizing agent.).

nataliedolan82 wrote: »

I have suffered for years with multiple symptoms such as headaches, irritability, anxiety, mood swings, stomach cramps, bloating, weight gain and other symptoms...I have had asthma since I was 9 years old and I have had arthritis since I was 13 years old and I am now 35 years old.

Aside from intolerances or allergies, some other ideas for what these could be due to.

Celiac disease that you got a false negative test for - the celiac disease testing first, has about a 20% false negative until quite recently. Also, the test only registers DAMAGE. After it triggers, it may take a while before you are damaged ENOUGH for the test to really be able to register it properly, so you can get a false negative for that reason as well. Or in other words, it's a not a bad idea to get another celiac disease test unless you got one very recently (like, within the last few months).

Other auto-immune disorders - like you noticed thyroid and celiac could be issues, but many other auto-immune disorders can have many of the same symptoms. These symptoms just aren't listed as the major ones when you start looking (and many doctors don't really memorize any but the major ones), even though sometimes, these symptoms are really common for folks with these disorders.

vitamin deficiencies - on their own, or due to other problems like some you mentioned (parasites, leaky gut, celiac).

SIBO - bacterial overgrowth. This requires a breath test, usually by a GI doctor. It can end up bothering you every time you eat, sometimes when you drink, so might be worth reading up on.

Fructose Malabsorption - folks with this can't properly digest certain molecules (not actually just fructose, but certain oligosaccharides - they require a low FODMAP diet). I would recommend checking out MONASH university's information on this, if you are reading up on this. They are the most up to date, in my experience. Australia was researching this way before American doctors accepted that it was real, so the USA is behind in terms of doctor awareness of this.


And this last one...which you are welcome to message me about, if it sounds possible - a mast cell activation disorder. Specifically possibly mast cell activation syndrome.

First - pretty much no information on this in medical sites is going to help you figure this one out. They will, in fact, likely make you feel you can't have this. Because medical sites are WAAAAAY out of date on current information on this. Like, SO out of date. They'll make you think that the only people with this are those who have hives and itching and go into anaphylaxis all the time.

This is not the case at all.

There are some good support groups on Facebook right now (just search MCAD, MCAS, mast cell disorder, or mastocytosis - the groups will come up). They will have better information if you ask them about symptoms and such, you know?

so, second - what this is. Mast cells are a jack of all trade cell that is everywhere in the body. It does all sorts of jobs, and as a result, mast cells in various parts of the body have different substances (mediators) inside that are released when they are triggered. There are over 200 substances that have been identified, and most have barely been studied.

A person with a disorder of this has their mast cells behaving badly, basically. Physical, environmental, or emotional stressors can trigger the mast cells, and so they trigger when they shouldn't, or they release the wrong mediators. Or they release them for too long a time, or too quickly and all at once. What happens depends the person, one which mast cells are involved, which mediators are released, and how quickly. And different triggers can cause different results. And different mediators cause different symptoms.

So the number of symptoms people can get from this is pretty broad. But includes every symptom you have.

The thing is, one of the mediators is histamine, so a person with this can have allergic reactions to all sorts of things. Some people DO have the big anaphylaxis problem. But a lot of us (I have this particular one) have as slower release, so we get more chronic problems. Again, like what you mentioned.

This disorder also can wax and wane. Many of us have been sick since childhood, but we may have had few problems, or less severe ones. Then things can get suddenly worse, or alter to include different symptoms. Arthritis is a common one due to many of us having high levels of inflammation.

IF you do think, after asking some questions on any of the support forums, that this could be a possibility? You'll likely want to talk to them about getting tested. Because your doctor? Unless you are fantastically lucky, or they are amazingly like the House doctor, they ill be little to no help.

There is one variety of this disorder that doctors at least know the name of - mastocytosis. But MCAS is newer (it just finally got a designation that doctors could bill for I think...last October? Might have been the year before). Doctors just do not know about this thing. And they often THINK they do. They think it's the same as mastocytosis and so the tests and test results are all the same (they are not, although there is some overlap of testing, but not always of results).

Just to illustrate - there is one doctor in my town of about 1 million who even DOES the tests for this (and it's just some simple blood and urine tests, initially, they are just not commonly done). There are about three practices I know of, including hers, who test for this in my STATE.

None of these are even experts who know a lot about how to treat this - I would have to go to the next state for that, and to my knowledge, that guy is the only one on the west coast who would be considered an expert in MCAS. He was a pediatrician, but since there are so few doctors, he was taking adult patients if you had MCAS.

So...yeah, getting a doctor to HELP with this can be tough.

On the other hand, most doctors just try to help with issues with the histamine, and none of the other mediators because you don't test much for those. So figuring out what triggers the cells is a priority, to stop as much of the reactions as possible, so you don't need meds to help with symptoms, you know? And that's all stuff that the patients do themselves, at home, with trigger journals. A lot of things for this, especially for those of us not going into anaphylaxis constantly, can be done by the patient at home or on their own.


Hope that you have a good doctor appointment tomorrow. And again, if you do think you want to know more about MCAS, feel free to message me. I'll answer what I can, send you some links, etc... :-)

Was in an emergency department from anaphylaxis after pounding 20 ounces of soy milk. Allergy confirmed after seeing an allergist and having testing.

I was also going to suggest further investigation into celiac disease.