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Reactions & Stories / Re: Allergy death in Australia
« Last post by GoingNuts on Today at 05:56:27 AM »
How utterly horrible.  I'm speechless.
Other foods/MFA/EE / Re: EE and/or Mast Cell Disorders in Adults
« Last post by StridAst on Yesterday at 09:37:51 PM »
The EDS is mostly a possible connection if there is family involvement.  Mostly something to consider if there is family history of joint complications.  I strongly suspect it with my mom's side of our family, but nobody in our family is diagnosed.  Worth looking into if you feel like you fit, but it's one of those things that might or might not be present. (Though if present it would *heavily* reinforce a case for MCAS.)

Re: dermatographia.  On page 10 of that 77 page document it lists the way dermatographia tends to present in MCAS patients:

Another very common dermatologic finding in MCAS patients is dermatographism. [48]
Sometimes simple removal of clothing makes it apparent, but integrating a simple light
scratch test into the physicianís standard physical exam is an easy thing to do. The
dermatographism of MCAS rarely is so vigorous as to manifest hives; instead, usually only
erythroderma is seen in the track of the scratch, arising within 1-30 seconds and often
persisting in full splendor for 5, 10, or even 15 minutes or longer.

Your description fits that easily.  It's a mild form of dermatographia, but the mild form is what's common with MCAS.  (Though far from universal). Also, this is the same way my own skin responds.  Including cuts and especially scrapes.  Just red marks, but rarely raised hives.  (Though occasionally mine do the hive thing, but usually just when something breaks my skin). Mine itch, but then I itch all the time and at the slightest provocation.
Reactions & Stories / Allergy death in Australia
« Last post by Penny on Yesterday at 09:35:36 PM »
I'm not sure if I'm posting this in the right area. If it doesn't belong here, please move it to where it should be.


An Australian boy died from an allergic reaction to his hospital breakfast. Louis Tate always carried his EpiPen with him.

But for more than a decade, the Australian teen never had to use it, despite being diagnosed with a severe allergy to cows' milk, nuts and eggs when he was a baby.

So the last place his parents Gabrielle Catan and Simon Tate expected things to go wrong was in hospital, when Louis was admitted overnight to Frankston Hospital, in Melbourne, with asthma just over two years ago.

Louis, 13, suffered a fatal anaphylactic reaction in the children's ward after eating a "spoonful" of a breakfast of Weet-Bix and soy milk.

His death is believed to be the first fatality linked to food preparation at a Victorian hospital.

"Because he was in hospital, I thought the medical staff would know exactly how to take care of him," his mother, Catan, said.

"I didn't felt like I needed to say anaphylaxis is a life-threatening condition."

The opening day of the coroner's inquest into Louis' death has raised serious questions about Frankston Hospital's procedures for patients with allergies, and also about the investigation that took place in the wake of the death.

Irene Fisher, the patient services assistant who was responsible for serving breakfast at the ward on the day of Louis' death, said that a whiteboard which normally detailed food allergies did not have Louis listed on it.

Fisher said she had instead been verbally told about the allergies by a nurse when she began her shift.

Louis was admitted to Frankston Hospital on October 22, 2015, after coming home from school with laboured breathing.

His mother said she had left the hospital early the next morning to let her son sleep, with firm instructions for the nurse about what he should eat when he woke up.

"I told her that the safest food for him for breakfast was Weet-Bix, because it is widely available, and soy milk and if he needed anything else, maybe fruit," Catan said.

"I really thought about the safest, simplest food that he could have that was readily available."

However when Catan called the hospital to check on her son later that morning she was told that he had complained of a tingling sensation in his mouth after eating breakfast.

Hours later he was dead Ė his heart had stopped after doctors administered anaesthetic to help him breathe.

Fisher has confirmed that she had supplied Louis with Weet-Bix, soy milk and a glass of water, but also revealed that she had also prepared him toast with packets of jam and butter.

The veteran hospital worker said she had walked into his room with the toast but found it filled with doctors.

Under questioning, she said she never would have given him the toast and butter without checking with the nurse first.

Fisher said later in the day she was asked to supply the soy milk that had been in the ward fridge to someone at the hospital, but could not remember who that person was.

"They wanted the milk to be analysed, that's what they said."

However Catan said when they had met with the hospital the following year she had asked why the breakfast had not been retained for testing.

"We were just told 'Oh, we didn't know that it would go so wrong and he would die," she said.

Helen Hutchins, a ward nurse, said a new computer system has since been introduced at the hospital, where details about patient's allergies can be listed.

In an emotional statement before the inquest began, Louis' father said the family strongly believed the death should have never happened, and that there were failures in the medical treatment he received after eating the breakfast.

"He was in hospital, at a place where he should have been safe. Yet despite us providing clear and concise communications about his food allergies, he died," Tate said.

"Our hope is that this inquest not only provides us with the many answers we need and deserve, but that it closely examines food safety and anaphylaxis management protocols at Frankston Hospital."

The inquest continues.

 - Sydney Morning Herald

Main Discussion Board / Re: Living with Food Allergies, 2013 and on
« Last post by PurpleCat on Yesterday at 07:02:54 PM »
Other foods/MFA/EE / Re: EE and/or Mast Cell Disorders in Adults
« Last post by Ciel on Yesterday 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.

Other foods/MFA/EE / Re: EE and/or Mast Cell Disorders in Adults
« Last post by Ciel on Yesterday 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.
Main Discussion Board / Re: Living with Food Allergies, 2013 and on
« Last post by Macabre on Yesterday at 06:50:06 AM »
Wow. That is great. 
Other foods/MFA/EE / Re: EE and/or Mast Cell Disorders in Adults
« Last post by StridAst on December 11, 2017, 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.

Main Discussion Board / Re: Living with Food Allergies, 2013 and on
« Last post by Ciel on December 11, 2017, 06:30:36 PM »
Wonderful teacher!

Your dd sounds pretty wonderful too.
Mfrs. & Packaged Food / Re: Horizon Organic Half and Half
« Last post by GoingNuts on December 11, 2017, 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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