Hello, update, and Oral Allergy Syndrome

[faithberry]

It's been quite a few months since I posted. Hope everyone here is well. I was so excited to read that Polly's MC is gone! This forum has helped so many people!

I wanted to share an update in the event that it might benefit someone else. Though probably nothing I add here will be news given the terrific detectives already here!

I've been symptom free from MC for years, but I've continued to have major problems with food intolerance, then chemical sensitivity and wacky mast cells. It's all been up and down the last six months, but I've been getting regular acupuncture and I'm much stronger and am a normal weight. Last December I took the Food Antigen Cellular Test (similar to Mediator Release Testing) offered by Genova Diagnostics International, but it didn't show much. Recently, a friend took an IgG Antibody Assessment from BioTek in Seattle and had a good outcome so I decided to give it a try. The results were very useful.

I haven't been eating a varied diet and antibodies won't necessarily appear to foods you haven't eaten in the last few weeks. The results were even more telling given that consideration. I reacted to sugar cane (which I haven't eaten for years) and brown rice, both grass family. Given my intolerance to gluten grains, I suspect a near total grain intolerance with the exception of white rice, it seems. In recent years I've also had problems with inhaling grass clippings and dried grass as well as skin reactions if I sit on grass.

I don't know how it all finally clicked but I realized this looks like Oral Allergy Syndrome. I have a number of the symptoms, except I don't have IgE pollen allergies. Just a little piece of raw arugula put on my tongue will make it burn. I went back and re-read some of Dr. Dewey's articles, where he elucidates the connections between our DQ genes and OAS plus the possible connection between some DQ genes and Mastocytic Enterocolitis. Light bulb went on! The genetics seems to tie all my problems together nicely.

As you may know, some people with OAS react to cooked fruits and vegetables, not just raw ones. And some rare individuals have trouble with almost all fruits and vegetables. And one article I read said, "Some evidence exists that people who never even knew they had a pollen problem can develop OAS out of the blue." So maybe there are people without IgE allergies that get OAS too. I would like to take the IgG Inhalant panel from BioTek to see what it says. But I also don't need a lab to tell me that I react to grass, I know that firsthand!

I wanted to report this here in the event anyone else is having trouble with continuing food intolerance. This might be a clue for them. Since we all have these DQ genes it seems very possible that more than one of us might have OAS. I would appreciate hearing if you do and any good solutions you have found.

My test also showed reactions to crustaceans and mollusks, yeast, and miscellaneous like asparagus and lettuce and a few others. If I had a more varied diet, the test would have probably indicated even more widespread reactivity. I don't eat crustaceans, mollusks, or yeast, but I had eaten some asparagus and lettuce around the test time.

Naturally, I wasn't getting better because I was still eating a small number of foods I react to without realizing it. Now my food options are extremely limited - like white rice, meat, ghee, and maybe a tiny bit of vegetables, but maybe that's what I need to do to finally heal this gut. I know Tex did the same for a year or so, but I'm also concerned about not rotating foods since I seem so reactive. I'm hoping eliminating the reactive foods (the few I was still eating) will make a difference.

All the best to everyone.

[Stanz]

Wow, all I can say to this is maybe you need to do some research on probiotics. There have been recent posts on this in relation to diet being specific to location and how eating food from outside your "area" can be problematic. I'm too tired to look up the links, but it's been recent.

Only analogy I can come up with is that your "body computer" needs reprogramming either by adding probiotics or bacteria so that your body can produce the needed antibodies. Was your Mom a bleach mom? My DH's mom was a freak about bleach, all her kids have endless allergies. My oldest sister was a bleach freak as well. All but one of her kids, that I know of, have had problems with mentation and weight, one of them has a child with autism, another is schizophrenic, there are weight issues as well. I've not seen the schizophrenic niece for several years, but all reports would say that she is seriously overweight.

[mbeezie]

Hi Faith,

Good to hear from you! Glad to hear your weight is now stable. It doesn't sound like you've been able to add many foods but at least you were able to discern the ones that were causing problems.

I have had symptoms of OAS in the past, like an itchy throat from pears when they don't normally bother me. I seem to remember you had a slightly elevated tryptase, correct? Do you still think mast cells/histamine overload are still responsible for these symptoms and related to OAS? I know people on this forum have reported a seasonal variation in their symptoms most likely due to environmnetal allergies - we certainly do have trouble with grasses, don't we?

What you report about IgG testing is accurate - it seems to reflect what you have currently eaten. I had very good luck with MRT and now offer it to clients. The vast majority find some benefit, some more than others (works great for migraines). I've not heard of the Food Antigen Cellular Test - MRT is patented, so I don't think it's the same technology.

I will keep my fingers crossed that eliminating your reactive foods will make a difference.

Take care,

Mary Beth

[tex]

Hi Faith,

It's good to hear that you're still making progress on your path back to health.

You might, (or might not), be interested in the thread that contains this post"

I'm self diagnosed with mastocytic enterocolitis and currently trying hookworm therapy.

My food intolerances had become unbearable and before inoculation I started entocort therapy in preparation. I was inoculated at the end of April. My symptoms improved dramatically while on the entocort, but I have not been able to taper to less than 6 mg/day without a major reaction to certain foods (gluten, lactose, citric acid, alcohol, caffeine). If anything, I feel more reactive to many foods, but it can take several months before you see any results from hookworm therapy.

If anyone is interested, I'll post updates.

That's the 4th post in this thread:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10601

Thanks for the update,
Tex

[faithberry]

Thanks for everyone's replies.

Mary Beth, Yes, I did have an elevated tryptase for awhile. I do think that mast cells and excess histamine are one part of the puzzle. How that comes to bear, I don't know for sure - whether it occurs in the colon or other locations due to the antigen/antibody responses.

I agree that even though I haven't been able to expand my diet yet, I am much closer to the roots causes of the problem. For that I am extremely grateful!

The FACT test is similar to the MRT in that it tests for the release of mediators, but doesn't necessarily use the same technology. It's not available in the U.S. (perhaps patent issues are involved, I don't know why.) I wanted to use MRT but it's not available to people living in Hawai'i so I settled on the FACT. The results were minimal, but what did appear is consistent with some reactions that appeared on the IgG testing.

Thanks for your good wishes. I hope eliminating the reactive foods will help too! Plus, there aren't alder or birch trees in Hawai'i, so that might help too overtime.

Stanz - Thanks for your suggestions. I've done high dose probiotics in the past and it didn't help. Now I'm sensitive to probiotics unless I try the bottoms up approach. :) That's definitely a possibility!!!!!

Tex - Thanks for the link to this thread. Hookworm therapy sounds a little weird but I like to keep an open mind. I will check it out.

I'm glad that OAS has not revealed itself as an epidemic here despite the genetic connections!!!!!

Thanks for the input and a big hug for everyone.

[faithberry]

That was an interesting read on hookworm therapy. Since there are still a few foods I can eat, for the moment I think I will stick with trying the rotation diet.:) I don't quite get what the hookworms do. Hopefully, I can calm my system down without have to research it more and go in such a direction. Basically, yuck...but then we take probiotics so maybe not so much difference.

[tex]

Faith,

The worms serve as a distraction. The immune system can only focus on one issue at a time, so naturally it selects the one that it perceives as the greatest threat, and it "ignores" the autoimmune reaction that it had been perpetuating, whether it be an IBD, arthritis, or one of the myriad of other possible autoimmune issues. Of course, all it can do about a helminth infestation, is to "watch and wait", since it doesn't actually have any weapons in it's arsenal designed to kill helminths, but that is sufficient to keep it occupied, so that the body can heal from the previous autoimmune damage. Of course, the helminths will cause a certain amount of inflammation, but generally, it is far less than the level of inflammation caused by the autoimmune reaction.

This is just a WAG, but I'd bet a GF cookie that helminths could be used to stop a celiac reaction, without diet modification.

Frankly, hookworms wouldn't be my first choice, if I were going to try to use helminths to control the symptoms of an IBD. I would choose pig whip worms, because an "inoculation" with pig whip worms simply requires drinking a solution containing their ova. The eggs hatch in the small intestine, and the worms are self limiting. Since they cannot complete their reproduction cycle in the human body, they will die off, eventually, unless the supply is replenished, by ingesting additional ova, on a regular schedule.

To me, the creepy part of the hookworm treatment is the fact that inoculation involves allowing a tiny worm to burrow into the skin, so that it can slowly work it's way into the internal organs, eventually winding up in the intestine. The problem is, some of them can wind up in the lungs, and various other organs, where they can remain dormant, and then become active, years later. For example, if the host is a female, and she becomes pregnant, the worms can become active when they sense the change in hormone production, and they can infect a baby, by migrating through the mother's milk. For all those reasons, I consider hookworms to be creepy organisms, that I would just as soon totally avoid.

Tex

[ant]

if I were going to try to use helminths to control the symptoms of an IBD. I would choose pig whip worms, because an "inoculation" with pig whip worms simply requires drinking a solution containing their ova. The eggs hatch in the small intestine, and the worms are self limiting.

Tex, that is a brilliant observation. Should it not be the default "worm" therapy?

Best, Ant

[Joefnh]

I will have to say the thought of allowing a worm to live in me just does not sit well.

--Joe

[tex]

Should it not be the default "worm" therapy?

I think that I would prefer it, (if I were going to do this sort of thing). One of the primary complaints about the whip worm treatment, though, seems to be about the requirement to down a fresh batch of ova about once a month, (or whatever the optimum interval might be). I'm not sure why that's even an issue - it would appear to be easier than taking a drug every day.

Also, if one of those wandering hookworms should end up in the brain, I don't believe the outcome would be good. Of course, the odds against that are probably tremendous.

Tex

[Joefnh]

Tex, I can understand the argument, a chemical vs nature... But this one would not work for me. Of course this aversion to worms is actually misplaced given all the other living organisms that our bodies rely on each day to live


--Joe

[tex]

Joe,

I agree - I don't find it particularly appealing, either. When I think of parasites of this sort, my thoughts immediately drift to those damn guinea worms that they have in Africa.

Tex