Carriefaith

I had yet again, another bad reaction... I couldn't keep hardely anything in my system yesterday and today I was a mess with internal/extrenal gas, cramps, a tight feeling in my chest/stomach/intestines, and mild-moderate breathing/throat problems. It's really hard to explain... I just feel like my body is under attack or something. The only thing that seems to help is to take lots of benedryl I really need to figure this out and get it under control. This time I am suspecting a milk contamination since my husband is also intolerant or allergic to milk and we both reacted. I have e-mailed one company and I'm going to have to contact a few more to get to the bottom of this. I hope I'm feeling better tommorrow...

Do you know what that big RAST test is called?

I have my report right in front of me. It says ALLERGY PANEL, MAST: FOODS

Yes, I've worn a medical alert bracelet ever since a lifethreatening reaction to peanuts when I was in highschool. I always carry at least two epipens with me. (Did you know that doctors are now supposed to recommend that people at risk of anaphylaxis carry two? Sometimes it takes more than one shot. A good percentage of the time, actually.)

I usually carry two epipens. One is a twin-jet so I really have three.

Try adding your favorite Kraft BBQ sauce to a brand name hot sauce like Franks Buffalo Wing Sauce. If you don't like hot, I would add more BBQ sauce than hot sauce.

Allergist #1 didn't think that I was allergic to wheat based on my description of my symptoms (and also I suspect that allergists tend to be skeptical about people who avoid lots of foods and suddenly develop new "allergies"). I suspected that wheat *sometimes* but not always causes hives. Also, whole grain breads *sometimes* made my throat very slightly itchy. Mostly, though I was feeling tired and lethargic after a wheaty breakfast + there was one isolated incident of vomiting. (I was puzzled because some of these symptoms aren't at all like my other allergy symptoms---now I realize that they are celiac symptoms.)

So you have a wheat allergy and celiac disease. I'm glad that they figured out you had celiac disease. Sometimes it can be hard to differentiate between an allergy and celiac disease, especially when you are allergic and intolerant to the same thing. It makes an accidental ingestion of wheat... well let's say "entertaining"! I suspect that I may have an anaphylatic rection to wheat (or milk), but I was told that anaphylatic reactions can't happen due to the ingestion of wheat...

After seeing all the positive skin prick tests, my current allergist decided to scratch my back with a tongue depressor to see if I was dermographic (a condition in which just scratching the skin lightly causes redness and hives).

I didn't know about the dermographic condition... I guess that is where the RAST test comes in.

I kept on having questions about my corn "allergy," and I could tell that he didn't believe that I was allergic. He brought up the whole intolerance/anxiety theory when I mentioned it. But I knew I was allergic---the symptoms are the same as for my other allergies although they weren't as severe. So he finally just suggested we order a RAST. After that, he took the allergy very seriously . . . even recommending that I don't try an over the counter medication with corn-derived sorbitol unless I was under medical supervision. It would probably be okay, he thought, but with allergies one can never know for sure.

Your allergist seems really knowledgeable, but he also seems skeptical. I'm glad he listened to you and got the testing done!

At one point, he did consider doing a lot of RAST tests . . . apparently there's some test where you can be tested for a lot of foods at once (not sure what this is called). He said it would be less expensive in the long run, but he wouldn't really know how to interpret the data so he didn't necessarily recommend it. He also said he could do the RAST tests individually . .. . but he was concerned because I'm a student and it would get expensive. We sort of left this issue up in the air---at that point I didn't realize that my student drug plan would cover a good portion of the cost, and I wasn't enthusiastic about spending a lot of money on tests. *maybe* another allergist would have done more RAST tests . . . it is hard to say.

I had that big RAST test done last February (2006)! The only food that came back positive was milk and it was low. Now in September (2006) milk didn't even show up on the skin prick test, but 10 other foods did! Ah!

I'd say that the RAST test *could* help one to pinpoint allergies. But for me, it just confirmed what I either suspected (in the case of wheat) or already knew. The major advantage of the RAST testing for me is that I now have most of my major allergies documented and my allergist has a better understanding of what I'm dealing with. If I ever end up in the hospital or somewhere where I am not in control of my food preparation I have a letter from him which they will have to believe.

So the RAST test is a good confirmation test, but can be false negative. I think I'm understanding now. You must be glad to have most of your allergies documented now. Do you wear a medical alert bracelet?

So you've never ever had a reaction to peanuts? But your allergist decided that you are allergic based on a recent positive skin prick test? I don't know . . . that sounds suspect to me. How does the doctor know that it isn't a false positive? Depending on how much I wanted to eat peanuts, I'd be tempted get a second opinion.

Yeah I am confused about the whole peanut thing, unless the allergy reaction I get is mild and I don't really notice? I would definately like to get re-tested, especially for peanuts and other nuts.

Wow, you have definately been through a lot. Your allergists seem to use a combination of skin prick tests and blood tests. Do you think that helps pinpoint an allergy? So your allergist didn't want to test you for a bunch of foods at once, was this in case you reacted? Was this for a skin prick test? I didn't know about possible false positives before... What could cause a false positive? Sorry I'm new to all this...

The link didn't work for me... I woud love to see if I can find it the next time I go into the city. I could use a good book on allergies.

Carrie,

I noticed in your signature that you tested positive for Metabisulfite.

If you are reacting to sulfites this could account for some of you "unexplained" reactions.

You could get the reaction from any one of these ingredients.

Sodium Sulfite

Sodium Bisulfite

Sodium Metabisulfite

Sulfur Dioxide Gas

Potassium Metabisulfite

Potassium Bisulfite

Sufites are found in alot of foods but particulary high in wine and dried fruits. Fresh grapes and strawberries can also be sprayed with sulfites.

I dont know if this has anything to do with any of your reactions but just something you may want to look into.

Thanks for suggesting that Rachel. I have had a reactions to wine and I thought that it may of been casein, since it is sometimes used, but now that I think about it, I may have been reacting to metabisulfite. One of the wines I had is now on the vegan list of wines. I just don't drink wine anymore

That's interesting that stawberries and grapes can be sprayed with metabisulfite. That means that I may have been exposed to three allergens at breakfast yesterday, strawberries and blueberies for sure and possibly metabisulphite. These allergies of mine sure keep me entertained

I forgot to add---not sure why you didn't react to the peanut butter. When is the last time you reacted? Some children do outgrow their peanut allergies. You don't want to unnecessarily restrict your life if you aren't allergic anymore. On the other hand, some people are still allergic but can tolerate a little bit before reacting. If this is the case, doctors generally recommend complete avoidance because you can't predict what will happen the next time. (This happened to me with bananas. I used to be able to eat about 1/3 of a banana. But one day, I reacted with just one bite. My allergist at the time practically yelled at me and it was then that I realized that it wasn't a good idea to be experimenting with allergens.) I'd mention the fact that you had peanut butter with no ill effect to your allergist---if you haven't had a reaction to peanuts since childhood, maybe he or she will want to do an oral challenge. (I'm not necessarily recommending this . . . peanut allergies scare me. I'm just saying that you should make sure your doctor has a complete understanding of your clinical history.)

Surprisingly, September was the first time I tested positive to peanuts and it was a high reaction on my skin (3/4 plus marks on my sheet). I was eating peanuts and peanut butter with no problems and even ate peanut butter the morning of my test. I was advised not to re-introduce peanuts though, based on my results. Like you said, you never know when you will get a severe reaction and I don't want to mess around with a peanut allergy that's for sure...

Thank you for all the links I was definately having symptoms from different systems yesterday. A barky cough is a grade 4 ... that's interesting because I didn't know that coughing was a food allergy symptom until yesterday I guess...

Re: processing changing the allergenicity of a given food----it really depends on the food. Seed storage proteins and animal proteins are generally heat stable as far as I know (so processing will not alter the protein enough). In the case of peanuts (which are definitely heat stable), there is some evidence that dry roasting actually enhances its allergenicity. The proteins in fruits and veggies resembling pollen + the pollen in honey (I can't eat raw honey) are the only ones I know of that are *likely* not to be allergenic if cooked. Egg is the only animal-derived protein I know of that can be affected by cooking----the protein is altered, and some people with an egg allergy can have eggs added to baked goods. But some people absolutely can't have egg in any shape or form.

Thanks for the explanation. I think I can definately rule out peanuts now. I won't eat them though just to be on the safe side.

Re: the skin tests. I'm not really sure why you can test positive sometimes and not other times and still be allergic. But I know it can happen----I'm anaphylactic to soy, and my skin prick test results have been inconsistent. Also, the degree to which I react varies widely. The one time I had a huge welt from the egg skin prick test that didn't go away for a number of days----and even when it did go away, the spot was itchy and would flare up. The last time I was tested, I tested positive, but I just got a hive. My ex allergist said something about a negative skin prick test being highly reliable if you aren't highly allergic . . .. false negatives are more likely if the patient does have a lot of allergies. I find this confusing too!

The positive and negative tests are confusing! How often do you get re-tested for allergies?

These are the best gluten-free brand names breads in my opinion:

Kinnikinnick Sandwick bread

Kinnikinnick Italian white bread

Sterks Sandwich bread

The testing for allergies is not perfect. Certainly that is the case with the IgG delayed food allergy tests (ELISA blood tests). You use the test results as a guideline, and try out what it's telling you. I showed a reaction to lamb as well, and I rarely eat lamb. If you have eliminated wheat, eventually your body stops making antibodies to it, so it doesn't show on the tests. That doesn't mean that you won't have a reaction to wheat though if you eat it again. All the foods I eliminated didn't show up on my IgG tests as being a problem, even though I knew they were.

Thanks for sharing. I'm guessing that I must have stopped producing antibodies to wheat.

Thanks everyone

Sorry to hear about the strawberries! I have trouble with lots of fruits and vegetables because of pollen allergies, too--but mostly with raw fruits and veggies (this is called oral allergy syndrome). The proteins that are similar to pollen proteins aren't heat stable so most people with this condition can eat cooked fruits and veggies. (There are exceptions. In my case, I sometimes react slightly to cooked carrots which cross react with birch. The reaction is very slight, however, so I still do eat carrots. On the other hand, I cannot eat potatoes at all anymore--this is probably related to my latex allergy since potatoes cross react with latex. Ditto with bananas.)

I would not recommend trying cooked strawberries since you had a more severe reaction (I'd say anaphylactic insofar as it involved more than one body system.) But this is something you could discuss with your allergist.

I really don't know anything about the ELISA blood test---but as far as the blood test I'm familiar with goes (RAST), it is not necessarily more reliable than the skin prick test. Actually, with the skin prick test (as I understand it) you are less likely to get a false positive. Some people have a positive RAST test but do not have a clinical allergy. On the other hand, it is possible to be anaphylactic to something and have a negative test. If you have an IgE mediated allergy, you are definitely producing the antibodies they test for with the RAST, but it is possible that the antibodies are attached to the mast cells and are not floating free in the blood (in which case you'd have a false negative.) (By analogy, you can have celiac but have a negative blood test----I was reading an article recently which indicates that the EMA may be negative because the antibodies are deposited in the bowel and are not detectable in the blood.)

My advice is---by all means, get tested because if you test positive for something it can help you pinpoint the problem. But the final test is whether you react to the food or not (and if you think you might react, it isn't something you would want to try at home.)

I do hope you have answers soon! I know it can be really scary to be reacting to things and to not know to what.

Thanks for all that information! I really appreciate it. So a reaction is anaphylactic if it invloves more than one system? I only had one positive food (milk) with the RAST blood test in February, 2006 and like 10 positives with the skin prick test in September, 2006 and I was really confused. Your explanation helped a lot.

If cooking a food alters the protein, would processing a food also change the protein. Let's say peanut butter and peanuts? I am apparently highly allergic to peanuts, but had peanut butter the day of the skin prick test and didn't get sick!

There is one thing I am super confused about and it will be hard to explain here, but I will try. I tested positive to wheat in 2003 on the skin prick test, negative to wheat on the RAST test, and negative again to wheat on the 2006 skin prick test. However, I think wheat or milk caused my severe reaction in July. I asked my allergist and I was told that I could still be allergic to it even if it didn't show up on the test. I was told that if I'm not eating wheat then it won't show up. However, I was confused about this because I don't eat lamb and it showed up positive. I'm going to stop rambling now...

I think the bottom line here is that I need to get re-tested. I hope that will solve some questions I have.

Which L'Oreal products do you use?

I use L'Oreal true match super-blendable powder (neutral), true match super blendable blush (warm), and eye shadow.

Make-up can be accidently ingested. I only get make-up that lists the ingredients. If there is no gluten or nothing I'm allergic to I will buy it. I use some L'Oreal products and Covergirl mascara.

Thanks so much for sharing that information! I'll have to see if I can find some.

Well I had an obvious reaction to strawberries today (I was eating blueberries too, which I am mildly allergic to). Anyway, I thought I had a "mild" allergy to strawberries (like blueberries), but that has obviously changed! This is kind of funny... As soon as I started eating them I sneezed, then after a while, I sneezed again and I'm like that's weird and I kept on eating. Then I got all congested and got a runny nose, ect. Within an hour or so I was periodically sneezing, my throat got all tight, I developed a cough, my nose was all runny, I had a bathroom "urgency", and I was really congested in my sinuses like I had a cold! I took benadryl and the symptoms went away in about 15 minutes!

I just found this article: Open Original Shared Link and apparently they found a protein in strawberries very similar to the birch pollen allergen. And I am highly allergic to birch pollen. I guess, having a birch pollen allergy can trigger allergies to foods, such as strawberries. I have heard that before...

So I guess I won't be eating strawberries anymore...

I missed it.. Sounds like she did a really good job of explaining.

Welcome

I hope you had a great birthday

I am really sorry So you do have that list of doctor's taking patients in Calgary? I went to see one of the doctors still on the list and I really liked him. I've went in a few times now and I'm considering him my new doctor. I'm going to PM you.

Do alot of people if they still eat gluten while having the disease stay skinny? If so, how come? or why not? I'm just curious.

Nutrients, fats, and vitamins cannot be absored as well when someone with celiac disease is not on a gluten-free diet; therefore, weight loss may occur.

I'm still not doing well not eating gluten....

Sometimes people need several months on the diet to notice improvements.

I do have other questions like does it disrupt sleeping and like could it make you depressed?

Gluten can cause fatigue, insomnia, and depression.

Kinnikinnick and Sterk's are my favorite breads.

Does anyone know when The View is on in Alberta? I'm hoping it's around lunch time so I can watch.

I don't think there are allergy shots for foods. If there are please let me know! I've heard of allergy shots for insect stings, pollen, and other inhalents.

Thanks for posting that information. I really appreciate it. I am glad that they took so much time to help and listen to you. I am anxious to see the letter! I do enjoy some of their frozen dinners and I would love to be able to eat them without worry.

Yes, I am paranoid over crumbs, even the "invisible" ones, and especially when I'm eating. I can just get so sick from crumbs that I can't detect!

I like Imagine, though they may now be on shared lines?

Oh no... why oh why...