too many issues with food

[asdis]

TW: food allergies, eating disorders (ED), mention of bullying/family/weight/doctors

We have what we feel is too many issues with food. And this morning they were triggered pretty hard by something that we normally deal with fine. We ordered a breakfast sandwich from a gas station (easy breakfast normally) and we made the mistake of not checking it until we got home. When we finally checked in, they had put sausage on it and no egg. We ordered egg with no sausage, even says so on our receipts. And we haven't been able to bring ourselves to eat since.

We have a lot of allergies and intolerances, but they can be really inconsistent. We're always allergic to apples and almonds (and all other birch fruits/nuts), but our allergies to fruits and veggies (like strawberries, bananas, melons, carrots, tomato, etc) and nuts (cashews, pecans, walnuts, even peanuts) fluctuate in severity from "slight discomfort after eating too many" to "instant hives, dry mouth, and chest tightness after a bite". We can't digest red meat, poultry has to be kept to small amounts, we can't tell if we're allergic to shellfish or just get food poisoning, and we'll eat fish but due to autism sensory issues we'll pretty exclusively just eat mahi mahi. Soy, especially in higher concentrations, hurts us. Sesame seems to hurt us. We're lactose intolerant, not horribly, but we also reserve our dairy intake to cheese and butter for the most part. We can't tell if gluten hurts us or not, because we haven't had our stomach fully stop hurting in decades. We have to be so careful, and yet, not careful at all because soy is in everything. Xylitol (birch sugar) is a very common sugar replacement. Soy and peanut oils are so common. "Non-dairy" means almond milk 50% of the time. Or coconut milk, which we're also allergic to. We try to get meatless protein, but it's hard to find ones without other allergens in them. We're trying to get in with an allergist, but we're also terrified to see one because we've never been to a doctor about allergies before. Most current doctors don't believe us when they ask about them either. Sometimes it feels like they want us to go anaphylactic to believe us. Everything we know has been figured out through trial and error.

The allergies never being addressed properly is what made falling into anorexia/extreme restriction so easy. Our family/peers were never kind about our body, and then suddenly we were "allergic to healthy". It also didn't help that our family would most often exclusively feed us the "junk" they were always upset about us eating. Our whole FOO has emotional eating/binging issues, and we picked those up too. We've been dealing with ana/restricting for 14 years, and still we can't find a way out that's not still obsessive or leads to emotional eating and binging. We don't purge anymore, but that's mostly due to our body not being able to anymore. We also can't really exercise, due to pain and injuries, and it definitely makes it harder. We've tried in the past, the last time we were trapped in ED, and it's at least partially to blame for some of our injuries. Because hypermobility means moving carefully, but we didn't really know we were hypermobile or what it meant. We do our best to stretch and move, but some days just getting up and going to the bathroom is all we can manage.

So now, two years after the last time we decided to work on our disordered eating and be more careful about allergies, we're so close to being right back where we started. We've gained weight steadily over the past two years and at first we were okay, but our back injury last year stopped us from working or even really doing anything. We stopped gaining muscle and kept gaining weight and that's where the tipping point was. We stopped eating again at first, then started getting ensures and stuff to help with protein/nutrients. But we can't afford to buy supplements and meal replacements anymore. We also just can't make as much food anymore. It's hard to stand for that long, especially when leaning over the stove or counter. Our shoulders give up faster. Sometimes our hands won't grip things properly. Half the time by the time we've finished preparing our food we're in too much pain to eat. We try to keep easy air fryer/microwave things on hand, but our body has been rejecting a lot of frozen and premade foods recently. We try to keep prepackaged refrigerator meals on hand too, like salads, but it's a 50/50 on whether or not we'll react. Cereal is fine, but not very nutritious and gives us stomach issues if we eat it two days in a row, even with oat milk. Microwave oatmeal is a last resort because the texture is often so bad it takes our appetite away. Our sensory issues and pain honestly make even having an appetite difficult most the time. Because our family never took our food issues seriously, most of our "safe" foods in regards to autism hurt us. Or are straight up junk food, like oreos. So genuinely, we think we're addicted to oreos. The only way we can deny ourselves one is through ED brain/disordered eating.

We're sorry this is rambly and long and confusing. We're just so frustrated right now. It's become a pattern again. We either don't eat or eat barely anything until our husband is home. Even then we only really eat a decent meal if he makes one or we have enough leftovers for one. And when we do manage to eat, we eat too much. We eat food with little to no nutritional value. All the time we eat too fast. If we eat slow, we forget about it before we're full and then can't finish it because the temperature/texture has changed. We're hungry, we think, but absolutely nothing sounds tolerable. We're scared to eat anything that could make us feel worse, which is everything. Anxiety brain is on overdrive about allergies, ED brain won't leave us alone about "what's healthy and possibly acceptable", and autism/sensory issues only want oreos right now. It feels like being stuck on a ferris wheel that rotates forwards and backwards and spins both directions from the center axis.

[dollyvee]

Hey asdis,

I get you and I'm sorry you're in so much pain eating. I can also see how growing up with a lifetime of food sensitivities that no one could really explain, and living in a family that probably didn't address those needs, could lead to disordered eating. It's a lot to process.

I've been discussing elsewhere on the forum my own history of allergies and health issues. Like you, my FOO was not receptive to what was happening internally for me and was often pressured to eat things because they were "healthy" and if I didn't, I was a picky eater. As a kid, I also tended to go for junk food because perhaps for some strange reason, I didn't react to that. I don't know.

Anyways, I've had MCAS symptoms off and on over the years, which flared up when dealing with mold, and have likely been present since childhood. I started realizing recently that I have been reacting to high histamine foods (tomatoes, peanuts, shellfish, wine, cheese etc) and went on a low histamine diet. So, now when I eat them, I will fall asleep shortly after. I also think there's something else going on ie salicytes, or oxalates, and think soy lechitins are an issue. I've also been gluten free for about 12 years. What I found with gluten is I think it takes a long time for the inflammation to go down. When I stopped eating it for a month, I noticed I had joint pain after and it would make my brain feel fuzzy.

Right now, I've started trialling different meds and am hoping it helps manage the issue. It's been so long since I have actually listened to my body in that way without feeling like there is something wrong with me, or not abandoning myself, that I think it's taking some time to figure out what's going on. There's also a very good MCAS forum on reddit if you think that all this sounds familiar.

Sending you support,
dolly

[asdis]

Thannk you for your support dolly 

We finally have an appointment with an allergist (our first ever) at the end of September and we're nervous but excited. Our PCP also prescribed us Epi-pens so we have those for the first time ever too.

We looked into the subreddit, thank you for recommending it. I think we need some more guidance from doctors to really figure this out though. We've attempted low-histamine diets before, but we're unable to maintain both ED recovery and the diet on our own.

We're currently on a more limited diet than normal due to some emergency medications and it's rough. Five more days of strict eating times and a smaller-than-normal list of safe foods. It's taken a toll on us and our available energy at any given time, especially because our dietary supplement drinks are unsafe to drink while on these meds. Those drinks, despite containing small amounts of allergens/intolerances, are really what keep us going. It's especially frustrating to not be able to drink them after having gone without them for so many months. We just got them back 

[dollyvee]

Congrats asdis, I hope the allergy appointment goes well. It sucks to be in a position of reacting to foods, but you're taking care of yourself by listening to your body, which is a big step.

I think we need some more guidance from doctors to really figure this out though. We've attempted low-histamine diets before, but we're unable to maintain both ED recovery and the diet on our own.

If the appointment with the alllergist doesn't turn up anything, you might want to go back to the sub and see if others had another course of action with docs. From what I've read so far, a lot of these symptoms don't function as normal allergies ie with a distinct IgE reaction, but hoping that you get it sorted and come to a more stable place. I just wanted to say as it can sometimes be disheartening with docs to be having reactions that they're not able to explain, and then are told directly, or made to feel indirectly, that it's all in your head.

Sending you support,
dolly

[NarcKiddo]

Well done for getting that appointment with the allergist. I understand how scary it can be to address these issues, even when it really needs doing, so it's great that you have been able to get that in the diary. I hope it gives you some actionable answers.

I don't have any particular food allergies or intolerances that I know of (I suspect a few mild ones but none that need totally strict avoidance). I do, however, have bitter experience of how a dysfunctional FOO can weaponise food. It's very unpleasant (to put it mildly) and very hard to navigate even when the FOO no longer has control of our diet. The patterns are set, and the triggers installed. With something that has to be navigated several times every single day, it is tough.

[asdis]

Thank you both for your responses  . We have an appointment with an ED therapist today and we're nervous but we know we can't skip it. Here's to hoping that she selected "dissociative disorders" as a specialty because she actually understands them, and not to just get more clients. We've tried ED therapy once before but the therapist told us she "wasn't equipped to help with our issues" because of the DID/the ED being tied to trauma.

We finished the emergency meds but our stomach hasn't returned to normal yet. We finally can eat whenever we're hungry again though. We're counting down the days until we see the allergist and trying to compile a comprehensive list of foods that we react to and how. It's supposed to be one of the best allergy centers in the area.