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Main Discussion Board / Re: Living with Food Allergies, 2013 and on
« Last post by PurpleCat on Today at 07:02:54 PM »
Awesome!
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Other foods/MFA/EE / Re: EE and/or Mast Cell Disorders in Adults
« Last post by Ciel on Today at 03:20:11 PM »
Iíve Spent the last few hours going over the diagnostic criteria for EDS.

On one hand, it seems to neatly connect many of my issues. On the other hand, I still have no clue.

Of the list of 100 diagnostic criteria at Ehlers Danlos for Dummies;

38 - yes
22 - possible/probable
40 - no


Still working on that 77 page article on MCAS.

Sigh.
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Other foods/MFA/EE / Re: EE and/or Mast Cell Disorders in Adults
« Last post by Ciel on Today at 11:16:08 AM »
Iím so glad to hear that combo is helping you! But yeah, definitely still sucks.

I am on pantoprazole magnesium 40mg twice daily and still have breakthrough symptoms. My GI doctor just prescribed dexlansoprazole 60mg once daily (extended release) but I havenít tried it because itís not covered and my current financial situation is beyond tight.

My GP once told me to take Zantac (H2) when I have breakthrough symptoms because itís a different class of medication than the PPIs. She recommended Gaviscon as well. I have done the Gaviscon but I donít think I have tried adding Zantac so I need to check the safety of that again. Thanks for the reminder!

I was on Reactine (cetirizine - I think that is the same as Zyrtec) once daily for a long time but ended up stopping because it wasnít really doing anything and I have a handful of other meds I take daily.

Maybe itís time to revisit the options with my doctor.



Re: dermatographia, Iím unclear if I have it or not. If there is a spectrum of severity then I probably do have a mild version. I donít have anything near to the photos of skin writing/art that you can see online. A superficial cut or scratch usually welts up just at the site of the cut. We called them wormy cuts when I was little, lol. The pen scratch test usually produces a bright red mark that lasts for at least 30 minutes. Sometimes it gets slightly raised but doesnít spread and isnít very itchy at all, so I donít know what that means. If I have a bigger injury to my skin I often develop a blistery rash around the site or edges of the cut or scrape or blister while it is healing, and it takes forever to heal. I thought it was the bandaids because I do react to the adhesives over time, as well as latex but it happens when I donít wear a bandaid at all. When I had surgery I had tegraderm on the incisions for a week and ended up with the same blistery rash, but more welty and it spread well beyond where the adhesive was in contact with my skin.

However, skin prick tests always come back 100% negative, sometimes the control is also negative and if it does react itís very slight.

In summary: I am a conundrum.


But things might be starting to make some sense. Iím just worried my doctor will think Iím making things up or something because I keep asking about different things.

StridAst, you have been more helpful than I can express. I am so grateful.
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Main Discussion Board / Re: Living with Food Allergies, 2013 and on
« Last post by Macabre on Today at 06:50:06 AM »
Wow. That is great. 
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Other foods/MFA/EE / Re: EE and/or Mast Cell Disorders in Adults
« Last post by StridAst on Yesterday at 11:43:14 PM »
Yeah,  that's definitely not just an allergy.  If the only odd allergic type reaction you got was cold, than it's less suggestive of mast cell issues.   Throw in the exercise induced anaphylaxis and the other minor reactions and the pattern is there.  Tests can answer it best,  but that price tag is brutal. :( 

Something to consider is the treatment for mast cell disease is two types of antihistamines.  H1 and H2 types together.  Zyrtec for the H1 and Zantac for the H2 are the most common.  While they are over the counter drugs, the dosages are typically not OTC normal doses.  (I weigh 82kg and my immunologist has me take 1-2 Zyrtec twice daily as an example.  I didn't see much benefit at 1 Zyrtec per day.  At the max dose of 4 per day 95% of the normally constant unrelenting itching I used to deal with is gone.  The major flares (anxiety, nausea, severe diarrhea, sweating, fatigue, flushing, asthma, dry mouth, etc) that I have had since the high doses were started are much milder.  (They still suck though). 

There's also quercetin.  It's an OTC supplement and a known mast cell stabilizer.  So between Zyrtec, Zantac, and quercetin, there are 3 OTC things you could take to help with symptoms.  Talk to a doctor before trying anything if you are taking any prescriptions.  As an example, if you are on any proton pump inhibitors (like Prilosec) for the GI stuff, you don't want a H2 antihistamine and PPI both.

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Main Discussion Board / Re: Living with Food Allergies, 2013 and on
« Last post by Ciel on Yesterday at 06:30:36 PM »
Wonderful teacher!

Your dd sounds pretty wonderful too.
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Mfrs. & Packaged Food / Re: Horizon Organic Half and Half
« Last post by GoingNuts on Yesterday at 06:09:32 PM »
Well, look what arrived in my Inbox today, after I re-sent my email.  Yet another non-answer - Like I need to be told that warnings are voluntary.  ~) Who do you think you're emailing?   :tongue: :paddle: :bonking: :toothbrush:

Hi Amy!
 
Thank you for your recent email to Horizon Organicģ.
 
The 'may contain' or 'shared facility' messaging on containers is not required per the FDA, it is voluntary messaging that you may see on some packaging.
 
However, I can assure you that we take allergenic food concerns seriously and have instituted allergen control programs at each facility manufacturing Horizon Organic products. Our allergen control programs consist of several components, designed to comprehensively address allergenic food concerns at multiple points of production. Examples of this program include the following:
 
∑         Supplier control Ė each ingredient used in production goes through steps to ensure quality and purity.

∑         Cleaning procedures Ė validated procedures to ensure effective clean and rinse is accomplished after each production run.

∑         Allergen-free product testing Ė testing in-process and finished product at frequent intervals to ensure safety.

∑         Storage/warehouse Ė allergen status labeling and isolation of ingredients to ensure no cross-contamination occurs.

∑         Production scheduling - scheduling of product runs are done in a manner that ensures allergen-containing products are run only after non-allergen containing products, protecting the immediate subsequent product from contamination risk.

We hope this information is helpful to you.

Happy Holidays,
Adrian & the Horizon Organic Team
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Main Discussion Board / Re: Living with Food Allergies, 2013 and on
« Last post by GoingNuts on Yesterday at 05:57:20 PM »
Awesome story.  Someone gets it!
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Main Discussion Board / Re: Epinephrine Nasal Spray in Phase 1 of Trial
« Last post by spacecanada on Yesterday at 05:25:08 PM »
I have to wonder how well a nasal spray would work with nasal symptoms being part of a reaction.  Think of a really snotty reaction; I don't think a spray could be effective then, or when you have congestion from other conditions such as viruses.  It will be interesting to see how the trial considers those factors. (They are spraying allergens in the nose and seeing how it affects the epinephrine.)

Sounds like an interesting experiment, for sure. 
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Main Discussion Board / Re: Epinephrine Nasal Spray in Phase 1 of Trial
« Last post by PurpleCat on Yesterday at 04:54:03 PM »
Exciting!
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