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Main Discussion Board / Re: Living with Food Allergies, 2013 and on
« Last post by SilverLining on Yesterday at 08:41:43 PM »
Sorry. I should have been clearer.

I told my son to either eat them or give them to his friends.
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Mfrs. & Packaged Food / Re: Horizon Organic Half and Half
« Last post by ajasfolks2 on Yesterday at 08:38:39 PM »
And now I am wondering about their little shelf-stable box milk singles for lunches???
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Mfrs. & Packaged Food / Re: Horizon Organic Half and Half
« Last post by ajasfolks2 on Yesterday at 08:37:02 PM »
My brain recalling another organic milk/cream / half-and-half that is X-contam with nuts but does not label for it?

OR was it Horizon all along and they are just now labelling?

I will try to get back in here tomorrow to link 2 threads or find the other one I'm thinking of.

But for now, I'd also like to just repeat the above perfect response in top post:


MOTHER-FORKER.

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Main Discussion Board / Re: Living with Food Allergies, 2013 and on
« Last post by spacecanada on Yesterday at 08:31:36 PM »
At least you didn't eat it!  That was my first thought when I read the initial post.  Like it was a regret post after eating something you thought was safe but then ate it and had a reaction.  I'm so very glad that wasn't the case!
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Other foods/MFA/EE / Re: EE and/or Mast Cell Disorders in Adults
« Last post by Ciel on Yesterday at 08:23:18 PM »
Thanks StridAst. You are remarkably good at explaining things in a way that is easier to understand. Thank you so much...Iím very glad that you are here (though sorry that you have need to know all this stuff).

Iím working on reading the paper you recommended. A lot sounds right, but also makes me think that perhaps Iím just crazy and desperately trying to make things ďfitĒ just to have an answer.

I would say I am naturally flexible, but not to any extremes. I was always naturally athletic as well and they seemed to go together. You would never guess that looking at me now though with so much weight gain. Even now, my yoga teacher sometimes comments that I am surprisingly more flexible than I look.

I mentioned headaches and facial pain - thatís from TMJ and causes pain on the right side of my head and face that literally never goes away. Thankfully it varies in intensity so itís not always at migraine level. The nerve behind my eye is chronically inflamed and makes it painful to move that eye. I have had episodes of occipital and trigeminal neuralgia, recurrent ear infections and sinus inflammation, tooth and jaw pain that are all attributed to the TMJ.

My joints arenít particularly weak and Iíve only ever had one sprain and that was while the ankle was already healing from a more serious injury. Both of my sisters can hyperextend their elbows and one can also do it to her knees. One sister has broken both elbows and the other has had knees problems. My thumbs are the only joints of mine that extend a little further than average but I caní Touch my wrist or anything like that. My hips seem to get out of place fairly often, always with walking longer distances or over uneven terrain like snow or sand. I have issues with repetitive motion in my hand and wrists as well.

On that test I only score a 2, possibly 3.

I looked up MCAS testing in my area. It is not covered by the province and looks to cost over $1000.


Typing this stuff out is helping me organize myself mentally. One good thing out of my long-windedness!
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Mfrs. & Packaged Food / Re: Horizon Organic Half and Half
« Last post by buttons on Yesterday at 08:07:54 PM »
Horizon doesnít respond to Cornucopiaís surveys about their organic farming practices and is generally considered to be a sucky company in terms of compliance and animal welfare anyway.
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Main Discussion Board / Re: Living with Food Allergies, 2013 and on
« Last post by SilverLining on Yesterday at 06:49:38 PM »
I think they went unsafe a l9ng time ago. Which is why I havenít had one in ages.

I never read the package in store. When I opened it, I read the individual bar, saw the may contain, then looked at outer package. It is listed and easy to read. So, my own fault.

But Iím still bummed.
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Main Discussion Board / Re: Living with Food Allergies, 2013 and on
« Last post by GoingNuts on Yesterday at 05:40:10 PM »
 >:( Indeed. 
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Other foods/MFA/EE / Re: EE and/or Mast Cell Disorders in Adults
« Last post by StridAst on Yesterday at 10:49:36 AM »
Ok, with Mast Call Disease, you would expect to see two separate patterns.  One of chronic (constant) symptoms (this would be your recurring GI stuff), and a pattern of acute symptoms. (Your reactions).   You definitely fit that part of it.  The most commonly affected areas are skin and GI tract. That also fits.  Dermatographia is very common (though far from ubiquitous) in mast cell patients.  This is where you can create hives or else red welts on your skin from mild-medium pressure.  If you can rub your skin once with the back end of a pen (blunt with no corners to scratch) and it turns red or produces hives, this is dermatographia.  My own skin just goes red, no obvious raised hive, just a bright red stripe.  It sounds likely in your case (you mentioned pressure hives with a blood pressure cuff)

 You would also expect triggers for the acute reactions to fall well outside of normal "allergy" triggers (proteins mostly for normal allergies.). The more common triggers are exercise, temperature (heat or cold),  sunlight, stress including emotional stress, harsh smells (perfume, soap, nail polish, etc).  You definitely fit that part too.

There's another thing that's a common comorbid thing with mast cell disease.  It's called Ehlers-Danlos Syndrome.  It's a genetic disease that runs in families and causes hypermobility (double jointed) and joint problems, as well as GI problems.  It's most often autosomal dominant. So one parent with it = a 50% chance for each child to inherit it.  You expect this to run in families, so you would expect multiple people over more than one generation to be on the flexible side, with joint subluxations or dislocations, and GI problems.  Check how you fit with the beighton score here:. https://www.ehlers-danlos.com/assessing-joint-hypermobility/

Stretchy skin is common as well.

With my family, I'm the least hypermobile in my immediate family I only score a 2.  But you add the TMJ, history of subluxations (partial dislocations) in both knees and left wrist, and the neck vertebrae instability, and it starts to paint a picture, especially when you add my very hypermobile brother and mother, and grandfather, uncle and nephews. (Uncle has needed a wheelchair off and on for years, grandfather needed a mobility scooter and couldn't walk unaided for the last 15 years of his life)  EDS is a spectrum disorder.  People with the more common types can have a mild case, or a severe case, or anything in between.  A mild parent can have severely impacted children or a severely impacted parent can have mildly impacted children.  It's all random.  Basicly EDS is a connective tissue disorder where your collagen is built wrong and is too flexible so you get bendy joints.  Symptoms get worse as you age, but very slowly.

I mostly listed EDS as it's a family related thing and is present in a large subset of people with mast cell disease of any subtype.  It's rarely diagnosed, but that has more to do with a lack of knowledge in the medical industry (just like mast cell disease)

I would *highly* recommend you download this paper and read it:
https://www.novapublishers.com/catalog/product_info.php?products_id=42603

It's a research paper on MCAS, but the symptoms fit all mast cell disease subtypes.

The best way to look at mast cell disease, is when the Allergic Pathway is no longer tied to protein (or sugar in the example of lone star tick bites) the triggers can be random instead.  Random is kind of the word to best describe mast cell disease.  Which symptoms you get are random.  Which triggers you get are random.  The severity is random.  But *everything* is cumulative.  Trigger A plus trigger B = more severe symptoms than A or B by themselves.   What also sucks about them is you can have your symptoms/triggers change over time.  Which can make us start to doubt our sanity quite easily. 

The thing is, this stuff is testable.  There are special blood tests, and 24 hour urine tests to look for this stuff.   However *every single thing* they look for is heat sensitive.  So the lab must be properly informed on how to handle the samples or you get a false negative.  This is part of the reason you need to search and find a doctor in your area that knows anything about mast cell disease.  Facebook has mast cell disease support groups, searching for one in your area is a great way to locate doctors familiar with it.  In Utah a Google search for "mast cell activation syndrome Utah" brings up an allergist in Logan, but misses the University of Utah hospital's allergy/immunology department which is the best place to go here.  So Google can be hit or miss.
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Main Discussion Board / Re: Living with Food Allergies, 2013 and on
« Last post by PurpleCat on Yesterday at 09:10:54 AM »
 >:(
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