5 ms·

My wife had this from late 2007 until mid 2009 and nearly died from it. She was one of the early, benchmark cases. We went to Mayo clinic in Rochester in the

My wife had this from late 2007 until mid 2009 and nearly died from it. She was one of the early, benchmark cases. We went to Mayo clinic in Rochester in the summer of 2008 and they had no luck identifying her symptoms. An exceptional allergy doctor near our home in Arkansas did endless research and mostly figured out what was going on. After my wife came off of beef in mid 2009 her symptoms completely disappeared. Prior to that, she was extremely ill, on 24 hour O2. In fact she had picked out the location on our property where she wanted to be buried. I'm going to bed but I'll be happy to answer any questions in the morning.

bowmessage 5y ago
How often was she eating beef before mid 2009? Thanks and sorry that you all went through this.
- Diederich 5y ago
  Don't recall exactly, certainly not much, because at the time she preferred a very green, vegan diet. She would eat steaks with me from time to time.
taxicabjesus 5y ago
> on 24 hour O2. When did she start the O2? What was the motivation for starting O2? How did she get off the O2? [Oh, you didn't say she got off...] Did she get off the O2? What kind of cautions was she given regarding O2? [0], for example... I'm interested because Oxygen seems to be overused, in spite of it being known to be problematic when used in excess. [0] https://news.ycombinator.com/item?id=22993262 https://news.ycombinator.com/item?id=22993262
levi_n 5y ago
12 years on, does she still have reactions if she eats beef? Does she (or maybe did she) have any reactions to other mammal proteins (milk, pork, etc)?
- jeffffff 5y ago
  i seriously doubt that she would risk testing this out
  - Diederich 5y ago
    I upvoted you, don't know why others have downvoted. It took us both years before we even considered testing her reaction again because of how bad it was before.
- Diederich 5y ago
  She started eating beef again about three years ago, very slowly at first. Of course she had a tremendous fear of doing so, but was able to get past it to experiment. This was also driven by some long term low to very low iron levels, and supplements weren't doing the job. She had to get some iron infusions, which isn't a pleasant procedure. Once she started eating beef again, her iron levels came right up. In fact we just got back from Safeway with several pounds of medium lean ground beef for dinner tonight and tomorrow.
moneywoes 5y ago
What does her diet look like now? Has her health improved with a meat less diet?I worry if I get this I won't be able to eat much at all, already have celiac disease and lactose intolerance.
- wayneftw 5y ago
  My neighbor has this and she said that she can still eat Chicken and Seafood.
- Diederich 5y ago
  Her diet and health are now exceptional. Her diet includes beef a couple times a week because she struggles with iron deficiency.
arcticfox 5y ago
That's wild - so glad you guys figured it out in time. What was the process like of narrowing it down first to an allergy, and then to beef (?!)? Was there a protocol in place or was your doctor pretty much improvising?
- Diederich 5y ago
  The process was chaotic and 'improvising' is certainly an appropriate characterization. In truth, the awesome doctor only lightly suggested this as a possibility. I worked with her (the doc) pretty closely. We were both reading large volumes of medical studies, and creatively coming up with things to test/check for. My wife was too sick to substantively participate. She was also taking care of our young, autistic son. I suggested to my wife that she cut out all mammal proteins, and she was fine with it, just to try. We got lucky and her symptoms cleared up in a few weeks.
omarhaneef 5y ago
So I take it she didn't react right away or you would have figured it out. She didn't take a bite of beef and immediately feel something go wrong. She just slowly declined over time after the bite of beef?
- devb 5y ago
  From the article (not that far in!): Signs and symptoms of an alpha-gal allergic reaction are often delayed compared with other food allergies.
- Diederich 5y ago
  In agreement with the other reply: the symptoms came on fairly slowly, though for some reason the symptoms left quite quickly when she stopped eating beef.

bowmessage 5y ago

How often was she eating beef before mid 2009? Thanks and sorry that you all went through this.

Diederich 5y ago
Don't recall exactly, certainly not much, because at the time she preferred a very green, vegan diet. She would eat steaks with me from time to time.

taxicabjesus 5y ago

> on 24 hour O2. When did she start the O2? What was the motivation for starting O2? How did she get off the O2? [Oh, you didn't say she got off...] Did she get off the O2? What kind of cautions was she given regarding O2? [0], for example... I'm interested because Oxygen seems to be overused, in spite of it being known to be problematic when used in excess. [0] https://news.ycombinator.com/item?id=22993262 https://news.ycombinator.com/item?id=22993262

levi_n 5y ago

12 years on, does she still have reactions if she eats beef? Does she (or maybe did she) have any reactions to other mammal proteins (milk, pork, etc)?

jeffffff 5y ago
i seriously doubt that she would risk testing this out
- Diederich 5y ago
  I upvoted you, don't know why others have downvoted. It took us both years before we even considered testing her reaction again because of how bad it was before.
Diederich 5y ago
She started eating beef again about three years ago, very slowly at first. Of course she had a tremendous fear of doing so, but was able to get past it to experiment. This was also driven by some long term low to very low iron levels, and supplements weren't doing the job. She had to get some iron infusions, which isn't a pleasant procedure. Once she started eating beef again, her iron levels came right up. In fact we just got back from Safeway with several pounds of medium lean ground beef for dinner tonight and tomorrow.

moneywoes 5y ago

What does her diet look like now? Has her health improved with a meat less diet?I worry if I get this I won't be able to eat much at all, already have celiac disease and lactose intolerance.

wayneftw 5y ago
My neighbor has this and she said that she can still eat Chicken and Seafood.
Diederich 5y ago
Her diet and health are now exceptional. Her diet includes beef a couple times a week because she struggles with iron deficiency.

arcticfox 5y ago

That's wild - so glad you guys figured it out in time. What was the process like of narrowing it down first to an allergy, and then to beef (?!)? Was there a protocol in place or was your doctor pretty much improvising?

Diederich 5y ago
The process was chaotic and 'improvising' is certainly an appropriate characterization. In truth, the awesome doctor only lightly suggested this as a possibility. I worked with her (the doc) pretty closely. We were both reading large volumes of medical studies, and creatively coming up with things to test/check for. My wife was too sick to substantively participate. She was also taking care of our young, autistic son. I suggested to my wife that she cut out all mammal proteins, and she was fine with it, just to try. We got lucky and her symptoms cleared up in a few weeks.

omarhaneef 5y ago

So I take it she didn't react right away or you would have figured it out. She didn't take a bite of beef and immediately feel something go wrong. She just slowly declined over time after the bite of beef?

devb 5y ago
From the article (not that far in!): Signs and symptoms of an alpha-gal allergic reaction are often delayed compared with other food allergies.
Diederich 5y ago
In agreement with the other reply: the symptoms came on fairly slowly, though for some reason the symptoms left quite quickly when she stopped eating beef.