6/20 update mycoplasma bacteria? Update 6/17 Dd has mystery symptoms....Doc Hive please attend

[JFSinIL]

6/20 Latest wrinkle - sil reminded us one of her dd, cousin to my dd, had anaphylactic response to something, ER, extensive testing...docs ended up thinking a systemic response to mycoplasma bacteria.  So dd will ask doc to test her for that, too.  I can find little info on mycoplasma critters causing what looks like food allergies....note niece did not respond positive on any food allergy testing either.  So maybe this is what ails dd?  Anyone heard or read of anything like this?  Closest I can find is a scant number of cases of tick bites causing meat allergies thanks to these mycoplasma critters. Note niece lives in New Mexico and dd in Illinois, no contact between them since niece fell ill in February.

UPDATE.  Looks like she is developing a nut/legume allergy too.  She has her epi pen, and next week is work is giving her a work laptop to use at the allergist office as he is doing an " oral challenge"  since her skin and blood tests are negative.  She is not happy.  Doc wants her to minimize corn, too ( which is in everything pretty much) since her grandma had a corn allergy (mil).   

Typing on iPad since can not post on new boards no matter what via computer. Anyway - dd, 24, developed what she thought was an egg allergy a couple months ago.  Eat eggs, or anything with even a trace of egg, and get nauseated, also throat starting to hurt and lips getting "fuzzy" feeling.  There are a few folks on hubby's side of family that do have food allergies, including egg, so seems probable she has one.

Except doc did blood test which was negative.  Dd went to a second doc, this time an allergist.  Skin test in office was negative....yet an hour later she felt the nausea and throat and lip thing again.  Called doc and they had come back, gave her Zertext? Or something with a z, and monitored her.  She felt better and left after another hour.Today they got blood work back ....again, negative.

So does anyone know of any metabolic or other ailments that might mimic an allergy, even to symptoms leaning towards anaphylactic response?  she has felt better with antihisamines, and the doc gave her a script to get an epi-pen just in case.

ps blame all typos on my fat fingers having to type this on an iPad.  Seriously, I can not log on and type anything on any other device.

[JFSinIL]

Ps forgot to add, this is my kid who had her gall bladder removed as a teen.  So we know it isn't that! ?

[Katy]

If the doctor gave an epi pen she has symptoms of egg allergy.  It might still be developing.  It might actually be a histamine intolerance with a mild egg allergy.  I'd look into a low histamine diet and see if that helps. 

[Carol in Cal.]

Allergy tests are notoriously inaccurate.  When they say you have an allergy, you do, but when they say you don't, you still might.  So I would treat this as if she does.  

[Jean in Newcastle]

Don't mess with symptoms which affect the throat and mouth.  No more eggs.  As Carol said, allergy tests aren't that accurate.  And who is going to be arguing that it isn't technically an allergy while someone's throat is closing up? 

[JFSinIL]

Dd asked me to ask what you think may have caused puffy face, itchy eyes and projectile up chucking 15 minutes after eating this egg-free product.  She is concerned she may be developing an allergy to something else, too.  Dailya cheesy mac....supposedly egg-free

[kbutton]

Well, people are allergic to dang near anything. From that list, I would not be able to do coconut oil. One day I could, another day, I couldn't. 

Natural flavors could be chock full of high-histamine stuff.  I would second the histamine intolerance and related issues--some people have issues with mast cell activation disorder, for instance or with salicylates.

I highly recommend keeping a food journal if possible, or trying an elimination diet if it is not evident what is causing all the issues. 

Also realize that there are other antihistamines besides zyrtec--different people respond better or not at all to various options. There are also h2 blockers (for heartburn) that help with reactions as well. 

[Jean in Newcastle]

Well, I don't think that the Daiya mac and cheese tastes very good. . .   I like this:  https://www.amys.com/our-foods/rice-mac-cheese-gluten-free

[prairiewindmomma]

I'm guessing they gave her zyrtec, which is an antihistamine.
I take it every day; the generic name is cetirizine.

So, she's now disqualified from more allergy testing for the next two weeks.....

Look, her body is unhappy about something...unhappy enough that she should be carrying epi-pens, and probably using them to boot.

Keep digging.

[Jean in Newcastle]

If her body hasn't calmed down from the first reaction she could be still reacting to the first thing once she comes off of the Zyrtec.  Sometimes when you stop the antihistamine, the body releases some more histamine and you react in a way that seems randomly.  I'm not sure if I'm stating this clearly. 

[lavender's green]

Allergies are weird and tests don't catch everything. I had a bad reaction to mussels. Skin and blood tests came back negative. Did an oral challenge. Negative. A day after the oral challenge I drank wine and exercised (like I had with my initial reaction), and had a mild reaction. Weird, but it's known that sometimes the allergen plus exercise or alcohol can cause a reaction, even if the allergen on its own doesn't.

I'm not necessarily saying to look into alcohol and exercise. Just illustrating how weird allergies are, and that testing is really in its infancy.

[Katy]

The more common allergens on that list are coconut and legumes.

[cintinative]

I wonder if she could have oral allergy syndrome that is somehow causing a reaction to eggs?  https://en.wikipedia.org/wiki/Oral_allergy_syndrome

ETA:

Did she eat anything else say 2-4 hours before the macaroni? She has already had one delayed reaction (from the allergy testing), so it is possible this was a reaction to something she had earlier. I had a severe delayed reaction once (about 3-4 hours later). I have a friend who gets them all the time.

 

[Laurie]

With the Daiya mac and cheese,  it could be the tapioca starch.   My daughter and I both get GI distress from it so we avoid it.   It doesn't bother my son at all.

http://www.glutenfreekiwi.com/tapioca-flour-questions/

[Jean in Newcastle]

Yeah- I don’t do well with tapioca starch either. 

[kbutton]

17 hours ago, Jean in Newcastle said:

If her body hasn't calmed down from the first reaction she could be still reacting to the first thing once she comes off of the Zyrtec.  Sometimes when you stop the antihistamine, the body releases some more histamine and you react in a way that seems randomly.  I'm not sure if I'm stating this clearly. 

As clear as you can state something that is already pretty weird! ? This stuff defies explanations sometimes.

[Scarlett]

I don't know much about allergies in general, but I do question the testing.  

My only advice is that your dd should avoid things like that mac and cheese that seems full of additives.  Go more clean I guess I would say.

But regardless of what the test says I would also avoid eggs!  How scary! 

[BarbecueMom]

Could it be Mast Cell Activation Syndrome?

[Katy]

43 minutes ago, BarbecueMom said:

Could it be Mast Cell Activation Syndrome?

 

Yes.  Otherwise known as histamine intolerance.  I recommended a low histamine diet up thread.

[BarbecueMom]

23 minutes ago, Katy said:

 

Yes.  Otherwise known as histamine intolerance.  I recommended a low histamine diet up thread.

Ah, okay, I wasn’t sure if they were the same or “adjacent” conditions.

[Katy]

1 hour ago, BarbecueMom said:

Ah, okay, I wasn’t sure if they were the same or “adjacent” conditions.

My understanding is doctors in different countries use one term or the other.

[JFSinIL]

Bump. 

[Jean in Newcastle]

I’m sorry, JFS. 

[Pen]

Recently there was a thread about organic foods and “allergy”.  Which obviously from that thread a lot of people on these forums think is hooey, and I don’t want to get into another distressing exchange. But want to mention it in case it might be applicable to your dd  

What you are describing sounds similar to what some people I know (myself included) who have to eat organic or cleanly grown foods (and avoid certain things entirely or at least rotate them even if organic) experienced early in the progression of their condition.

Allergy testing and real world reactions don’t necessarily match up. And there tends to be a cascade of increasing numbers of things that trigger symptoms — and a cascade of worsening symptoms.

For myself, I think if I had realized sooner what was happening, I might have avoided the development of devastating health consequences. 

I hope that this does not apply to your dd, but mention it because your update fits a pattern I’ve seen/heard about/experienced. 

[Matryoshka]

On 6/13/2018 at 10:59 AM, BarbecueMom said:

Could it be Mast Cell Activation Syndrome?

 

I was going to suggest this.  Dd was allergic to absolutely nothing as a child, and then this.  It's not that you're necessarily allergic to any specific thing, but that virtually anything can cause a flare-up, especially if there's already a bunch of other stuff you're reacting to.  Like, tomatoes alone might be okay, but not if also with another thing that might trigger.  Her dorm room had hidden mold and her flares were much worse while there.  Fortunately she's moving to another building next year.  She's on a MCAS stabilizer and rotating something like three different antihistamines all the time now...  there's random hives, flushing, GI swelling, and it's virtually impossible to narrow anything down to one cause.

A low-histamine diet as someone else suggested is a great place to start.  The idea there is to lower the overall load...

[JFSinIL]

Thanks, I am sharing this info with DD.   I had SillyAutismBoy on a rotation diet DECADES ago.....time to refresh m memory!

[BeachGal]

Another idea is to try improving her microbiome. Add an excellent probiotic like VSL#3 or Visbiome (these two are used in research and are superb; probiotic labeling is very poorly regulated in the US, practically meaningless) to seed her gut with beneficial bacteria and then feed them with fibery foods that she can tolerate. Beneficial bacteria help to tighten junctions between cells in the gut and help build the mucous lining.

The Good Gut, a book written by husband and wife researchers Erica and Justin Sonnenburg at the Stanford Sonnenburg Lab, could be helpful to start with. You can find interviews and talks with them online as well.

Another idea is to try anti-inflammatories like Meriva, etc., if she can tolerate them.

[Matryoshka]

Probiotics are a good idea. If it's MCAS, Quercetin is a helpful OTC supplement.