![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
Random observations on a quiet Tuesday
May. 5th, 2026 03:07 pmI did not forget anything that needed to go in with A. today. I had a whiteboard checklist and was diligent. We mostly got her there on time. R. had left much earlier, to go visit a nursery in Connectthedots, regarding plants for the new house landscaping.
I got a text from EP regarding who would be attending OAC meetings after he went on parental leave. Apparently JB talked to him, and the result of that conversation was a change. She preferred C, and I 100% do, too, altho I was prepared to work with whatever happened. Fingers crossed! We’ll all keep learning things, and hopefully we’ll end on a collaborative and collegial high note.
I finally got around to digging around in pubmed / Teh Interwebs on the topic of whether anyone has milk-fat sensitivity / intolerance. There are people out there who describe the same kind of problem I have, and that A. has developed recently, but no science on it except a somewhat cryptic abstract from the early 1970s.
But I learned a bunch of stuff by trying to make sure that my understanding was correct before dismissing a whole bunch of redditors who … turned out to be right (this is why I check!). I had failed to understand that an ingredient on a food label, whey is NOT entirely protein, and neither is casein. So, if you are really lactose intolerance, and you consume whey and/or casein, just know that you are also consuming lactose. Even if you are consuming “whey isolate” or “casein isolate”, altho with those, there’s a lot LESS lactose.
The other thing I learned that was notable was “non-IgE mediated allergy”. And the description of that is a remarkably perfect match for my life history — and the treatment is total avoidance. Go figure. Right down to major ulceration when accidentally consuming a large volume of milk (I foolishly had a mocha beverage post-skiing when I was in college, and spent the next year with massive stomach pain that totally disappeared after receiving broad spectrum antibiotics — so, yep, ulcer, yep h pylori infection — but if was the very early 1990s, so h pylori wasn’t as publicly understood at the time).
I also poked around a bit at some of the mechanics of milk allergy and diabetes (the association of type 1 diabetes and milk allergy is of long standing, and I’ve known about it for years if not decades, and have generally assumed that’s why my Uncle Dick was diabetic) and learned that, unsurprisingly to me now, it’s all about mast cells and glp-1 suppression and yada yada yada. Depressing how powerful my little knob theory is, especially since that uncle passed of colon cancer, entirely associated with diabetes AND I might add, entirely associated with a quiescent immune system.
I had to stop, at that point, because I was so angry. I was angry at all the people who push back on me saying that I have to watch out for ghee, even tho it should be fine — there’s enough milk protein left in ghee to be a problem for folks like me. Even tho folks like me do NOT show allergy on scratch tests or even show an immediate allergic response with a dietary challenge. Non-IgE mediated allergy can take up to 48 hours to show up. *sigh* _Even Slower Than Alpha-Gal_
Worse, poor Priestess, life-threateningly allergic to cats and pork, obviously has pork-cat syndrome, but all tests show negative to cats and to pork. Probably another non-IgE mediated allergy.
We know what’s wrong with us, at least in the, “That will make us really really sick” sense. We figure out that we have to avoid it. We keep having to explain it to people who often seem more interested in us convincing them than in being helpful to us. I don’t mind explaining weird and confusing stuff to people who would like to be helpful! I often ask a lot of infuriatingly detailed questions. And also, I am trying to get to an understanding that will allow me to be helpful!
Additionally, however, I keep thinking about the possibility that the up to 5% of kids who have food allergy but supposedly “outgrow it” might actually just have given up on talking about it, and accepted that they had to choke down stuff that was making them ill. Meanwhile, it was setting them up for Crohn’s and who knows what else, and possibly also contributing to a metabolic cycle that leads to overweight and insulin resistance and so forth, and now we are fixing with injectables. But what if this could have been avoided if we quit telling everyone they have to consume milk products.
If you want to play along, try googling “FPIES”. But be ready to get really, really, really angry, because when you look at all the stuff that goes along with FPIES, and the commitment to “growing out of it”, it’s really hard to believe that so much of our world could be so committed to ignoring so much feedback, and so prepared to literally kill people rather than accept that some people should be eating some foods and other people should be eating other foods.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9489450/
Apparently celiac counts as a non-IgE mediated food allergy, which makes a ton of sense to me.
I got a text from EP regarding who would be attending OAC meetings after he went on parental leave. Apparently JB talked to him, and the result of that conversation was a change. She preferred C, and I 100% do, too, altho I was prepared to work with whatever happened. Fingers crossed! We’ll all keep learning things, and hopefully we’ll end on a collaborative and collegial high note.
I finally got around to digging around in pubmed / Teh Interwebs on the topic of whether anyone has milk-fat sensitivity / intolerance. There are people out there who describe the same kind of problem I have, and that A. has developed recently, but no science on it except a somewhat cryptic abstract from the early 1970s.
But I learned a bunch of stuff by trying to make sure that my understanding was correct before dismissing a whole bunch of redditors who … turned out to be right (this is why I check!). I had failed to understand that an ingredient on a food label, whey is NOT entirely protein, and neither is casein. So, if you are really lactose intolerance, and you consume whey and/or casein, just know that you are also consuming lactose. Even if you are consuming “whey isolate” or “casein isolate”, altho with those, there’s a lot LESS lactose.
The other thing I learned that was notable was “non-IgE mediated allergy”. And the description of that is a remarkably perfect match for my life history — and the treatment is total avoidance. Go figure. Right down to major ulceration when accidentally consuming a large volume of milk (I foolishly had a mocha beverage post-skiing when I was in college, and spent the next year with massive stomach pain that totally disappeared after receiving broad spectrum antibiotics — so, yep, ulcer, yep h pylori infection — but if was the very early 1990s, so h pylori wasn’t as publicly understood at the time).
I also poked around a bit at some of the mechanics of milk allergy and diabetes (the association of type 1 diabetes and milk allergy is of long standing, and I’ve known about it for years if not decades, and have generally assumed that’s why my Uncle Dick was diabetic) and learned that, unsurprisingly to me now, it’s all about mast cells and glp-1 suppression and yada yada yada. Depressing how powerful my little knob theory is, especially since that uncle passed of colon cancer, entirely associated with diabetes AND I might add, entirely associated with a quiescent immune system.
I had to stop, at that point, because I was so angry. I was angry at all the people who push back on me saying that I have to watch out for ghee, even tho it should be fine — there’s enough milk protein left in ghee to be a problem for folks like me. Even tho folks like me do NOT show allergy on scratch tests or even show an immediate allergic response with a dietary challenge. Non-IgE mediated allergy can take up to 48 hours to show up. *sigh* _Even Slower Than Alpha-Gal_
Worse, poor Priestess, life-threateningly allergic to cats and pork, obviously has pork-cat syndrome, but all tests show negative to cats and to pork. Probably another non-IgE mediated allergy.
We know what’s wrong with us, at least in the, “That will make us really really sick” sense. We figure out that we have to avoid it. We keep having to explain it to people who often seem more interested in us convincing them than in being helpful to us. I don’t mind explaining weird and confusing stuff to people who would like to be helpful! I often ask a lot of infuriatingly detailed questions. And also, I am trying to get to an understanding that will allow me to be helpful!
Additionally, however, I keep thinking about the possibility that the up to 5% of kids who have food allergy but supposedly “outgrow it” might actually just have given up on talking about it, and accepted that they had to choke down stuff that was making them ill. Meanwhile, it was setting them up for Crohn’s and who knows what else, and possibly also contributing to a metabolic cycle that leads to overweight and insulin resistance and so forth, and now we are fixing with injectables. But what if this could have been avoided if we quit telling everyone they have to consume milk products.
If you want to play along, try googling “FPIES”. But be ready to get really, really, really angry, because when you look at all the stuff that goes along with FPIES, and the commitment to “growing out of it”, it’s really hard to believe that so much of our world could be so committed to ignoring so much feedback, and so prepared to literally kill people rather than accept that some people should be eating some foods and other people should be eating other foods.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9489450/
Apparently celiac counts as a non-IgE mediated food allergy, which makes a ton of sense to me.