Type IV-allergy and infusions

[Malea]

I have extreme reactions to nearly all foods, supplements, everything. The reactions come mostly delayed, often a day later and seem to be systemic with a big neurological/psychiatric involvement. I always thought that it was part of my MCAS. Now I have a new doctor who thinks, due to the delay, that the reactions are more of a t-lymphocytes type IV allergy.
(That makes sense for me since I have high numbers of cytokines like ifn-gamma, that are involved in that type of allergy)


I have a bit of trouble to understand that kind of allergy. In my understanding the first steps of the reaction start at the moment the allergen meets the mucous membrane somewhere. Now I have wondered if the whole reaction would also start, if the substance is given intravenously?

 

[sunshine44]

ugh me too!!! neuro reactions are awful too!!!

what can you eat? I am really working to find things that work for me lately.

 

[Malea]

Mainly rice

 

[sunshine44]

ugh same here!!!! I can eat a few other foods but going through a tough food flare lately. In 2013 after having many food intolerances and allergies for 4 years I suddenly could eat lots after a month on antibiotics....what a dream that was. It lasted for nearly 2 1/2 years and seriously felt like heaven. Definitely microbe related for me bc the allergies can reverse.

I am trying hard to figure this out whilst remaining calm ha!

Do you still eat other foods? We kinda have to. Do you bloat and get digestive burning and discomfort as well?

 

[Markus83]

Now I have wondered if the whole reaction would also start, if the substance is given intravenously?

I would think so because lymphocytes are everywhere in the body. Have you been tested or is it just a guess? IMD offers different screening panels for type 4 food allergies. However, I'm unsure about the relevance of the test. I've been tested positive for gluten in the past, but I don't feel any better when I don't eat it.

 

[sunshine44]

I had lots of bloodwork for allergies between 2009-2012. Some allergy testing done since then but I feel testing is limited in scope and can change quickly. Have I been tested for mast cell? not formally bc no drs around here know what it is but alternative healthcare practioners have said I am a classic case. Went to 4 hospitals in 2017 and 2018 plus maaaaaany drs trying to get help, testing , etc. but was never really helped or listened to. So, mainly bedridden riding out the long storm and doing the best I can. Frustrating because most treatments I try for severe POTS I can't tolerate bc of mast cell issues....super fun.

 

[Wishful]

My ME started with type IV food sensitivity. It started with oranges, but then I triggered on other juices, then other foods, and then nearly everything. White rice was safe, and so was cornstarch. A rotation diet avoided triggering on foods, but didn't reduce the baseline symptoms, which I didn't know at the time was ME. After 2.5 years, I had a bad reaction to fresh cherries, but a few days later I got food poisoning from spoiled coconut milk (typical flushing out response), and the next morning I no longer had type IV sensitivity. Haven't had a type IV reaction since.

My type IV reaction started with a precise and consistent 48 hr delay (typically +/- a few minutes). Type IV reactions are supposed to have 48-72 hr delays, if I remember correctly. When I started a rotation diet, my delay abruptly changed to a precise and consistent 17.5 hrs. After the cherry reaction, it again abruptly switched to 23.6 hrs or so (I didn't have enough time to figure out the exact delay). I can say that an <48 hr delay is possible for a type IV reaction for an ME victim. However, the delay was very precise and consistent, with abrupt switches. If your delay is <48 hrs and varies a lot, it might not be type IV.

FWIW, my type IV symptoms seemed identical to my ME symptoms. It took me years to realize that my type IV reactions had stopped, and that the flare-up of symptoms 20 minutes after eating was due to insulin increasing TRP transport into my brain.

I went to several allergists and immunologists, but while they agreed that it sounded like a type IV reaction, none offered any tests or treatments for type IV reactions.

 

[sunshine44]

That's my frustration with it all is that there doesn't seem to be a huge solution anyways. I did used to do a lot of rotation diets but did not notice much improvement in myself. Like I said bloodwork confirmed they mostly disappeared in 2013 after a remission but have since come back and stronger this time.

 

[Wishful]

The rotation diet worked very well for me. As long as I avoided exposure to a food family for 5 days, I could eat one meal of it without triggering my t-cells. Sooner than that and I would trigger.

It sure was hard to find enough different food families--and foods that I was willing to eat--to survive a 5-day cycle. It was worth it at the time though.

 

[sunshine44]

that is good. I have not tried it since 2012.

 

[Malea]

Have you been tested or is it just a guess?

It’s a guess from my doctor since most of the reactions seem too delayed for a mast cell reactions.

 

[Malea]

Sorry, no energy to answer the other questions atm. Anybody else has an idea regarding this question?

I have a bit of trouble to understand that kind of allergy. In my understanding the first steps of the reaction start at the moment the allergen meets the mucous membrane somewhere. Now I have wondered if the whole reaction would also start, if the substance is given intravenously?

 

[Wishful]

I'm pretty sure that t-cell activation isn't limited to mucous membranes. T-cells exist all through the body. People can get type-IV reactions to nickel via skin contact, which I don't think qualifies as a mucous membrane. So, my guess is that intravenous injection would trigger the t-cells at least as well as any other method.

 

[Wishful]

I said that I could eat one meal a day of a food family on the rotation diet. What I can't remember (It's been many years) is whether I could eat several meals of that family that day, before avoiding it for another five days. You'd have to experiment yourself, since the number of tolerable exposures probably varies with the individual.

 

[Gingergrrl]

Sorry, no energy to answer the other questions atm. Anybody else has an idea regarding this question?

I'm not sure if this pertains to your question but in 2015 when I was hospitalized for anaphylaxis (and was allergic to all food but water), the doctors had considered tube feeding, or feeding though an IV, but decided against it b/c they felt that I would still have the same allergic reaction regardless if I ingested the food by mouth or through a tube or IV.

So I was never tube fed b/c I was told it would not make any difference from an allergic perspective and I would react to whatever formula they gave me (at that time). The first thing to make a shred of difference was having IV Benadryl 30 min before eating. But this was for MCAS and I'm not sure if it relates to the Type IV allergies that you described?

 

[ebethc]

It’s a guess from my doctor since most of the reactions seem too delayed for a mast cell reactions.

by "Mast Cell Reactions" do you mean IgE allergy tests, or something else?

I thought MCAS was different pathways than IgE allergy responses, but I'm confused so maybe I was wrong to begin with

 

[Malea]

by "Mast Cell Reactions" do you mean IgE allergy tests, or something else?

I thought MCAS was different pathways than IgE allergy responses, but I'm confused so maybe I was wrong to begin with

In my understanding mast cell reactions can go along with super high igE but doesn’t necessarily have to. So you can have a lot of elevated mast cell mediators but still have low igE.

(E.g. I am having low igE but definitivily have some kind of mast cell stuff going on, with elevated Chromogranin A, tgf-beta ...but it doesn’t seem to be the driving force behind my extreme reactions.)

 

[Malea]

I'm not sure if this pertains to your question but in 2015 when I was hospitalized for anaphylaxis (and was allergic to all food but water), the doctors had considered tube feeding, or feeding though an IV, but decided against it b/c they felt that I would still have the same allergic reaction regardless if I ingested the food by mouth or through a tube or IV.

So I was never tube fed b/c I was told it would not make any difference from an allergic perspective and I would react to whatever formula they gave me (at that time). The first thing to make a shred of difference was having IV Benadryl 30 min before eating. But this was for MCAS and I'm not sure if it relates to the Type IV allergies that you described?

Thanks! I have thought a lot about parental nutrition before and it makes me worry so much that in a case I will have no tolerable foods left I can‘t back up on intravenous nutrition because I could clearly never be tolerating it. I‘m having elektrolytes and Magnesium i.v. since a few weeks and even reacting to these. It‘s manageable right now, so I‘m pushing on with them.

I think Benadryl wouldn‘t help in a case of type IV-allergy because it’s only blocking the histamine1-receptors on the mast cells and not doing something on the t-lymphocytes. I‘m taking low-dose Ativan to calm the daily mast cell stuff and it’s helping me a bit.

 

[Malea]

@sunshine44 , you asked for my other foods: I‘m mainly eating rice, cucumber, green salad and cream cheese from sheep‘s milk. It’s pretty bad that I‘m getting nearly no protein and fat. @Gingergrrl gave me some time ago the hint to maybe try lamb as a low-allergen meat but it didn’t work out for me. Even my super-allergic dog is tolerating lamb

 

[ebethc]

In my understanding mast cell reactions can go along with super high igE but doesn’t necessarily have to. So you can have a lot of elevated mast cell mediators but still have low igE.

(E.g. I am having low igE but definitivily have some kind of mast cell stuff going on, with elevated Chromogranin A, tgf-beta ...but it doesn’t seem to be the driving force behind my extreme reactions.)

y, that makes sense.... I have low to no IgE, but constant histamine reactions....

Are doctors starting to recognize MCAS at all? CFS specialists, do, but immunologists didn't last time I saw one, but that was a while ago