We’ve got gluten free cooking down. And we’ve learned how to make gluten and dairy free pizzas (that I STILL can’t eat), sandwiches, chili and soups… plenty of good options. Yes, dairy issues often go along with celiac disease. In my son’s case, he was having swallowing difficulty, and during his endoscopy they found the presence of Eosinophilic esophagitis, EOE. We went to an allergist and pinpointed milk as the cause. To his dismay. But he’s got a good head on his shoulders and he opted for the dairy-free diet over the medication alternative… a very proud mom moment. I do have cheese in the house because it’s easy for me to eat, but outside of that, we’re dairy-free and gluten-free. We’re not low carb. As soon as I read your response, I realized just how low carb we aren’t. 
and we should be. So I’m really going have to roll that one around in my head the next time I’m willing to think about tough things… 
Totally off topic for this thread, and I don’t mean to hijack it, but this is the first time I’ve seen anyone else on any of these diabetes forums mention eosinophilic esophagitis! 
I’m happy to hear your son is only reactive to milk. Mine seems to be caused by milk, eggs, wheat, soy, and possibly some other foods. I’d actually mostly eliminated dairy even before diagnosis, due to allergy symptoms — I’ve had an anaphylactic allergy to potato since a young age, and some of my dairy symptoms overlap with that more “classical” type of allergy. Avoiding all these foods, plus a few others that I get oral allergy syndrome to, plus trying to eat low-carb for diabetes (which I’ve abandoned for now, with predictable results, but will return to at some point when I feel less burned out) is not easy at all.
I have never heard of it, and it didn’t really belong in the OP’s topic, so I split it to see if an interesting conversation could ensure. I hope no one is bothered.
I didn’t realize we came over here. 
EOE, baby. I still botch the pronunciation and actually needed to copy and paste the name. We are esophagus-ly challenged in this house for sure. Only my oldest has been diagnosed, but the other two have such similar issues, gluten quirks as well, so it wouldn’t surprise me.
That’s pretty intense. I remember with my last son, who was breastfeeding at the time, being told to cut out all above-mentioned because of HIS allergies. I discovered almond milk and used it for everything. It was hard… you’ve got a tough gig. I guess traveling really is not an easy thing for you…
My oldest, when given the list of possible allergens, crossed his fingers and whispered “oh please” every time it got to something I make him eat but he doesn’t like. Like eggs (“oh, please”), nuts “oh, please”… all the way down the list. Milk was the only one he was hoping to keep. 
life’s tough. 
No… no, I can’t imagine it is. Sometimes I think it’s a blessing in disguise, all of these restrictions, but most of the time I’m not that mature.
So I’m curious… with all of these restrictions, what DO you eat??
Not bothered at all. 
Just kidding. 
What annoys me the most is I have all these restrictions, never eat out, and yet I still can’t lose weight and gain it at the drop of a hat. So irritating. Oh, and I have Graves’ disease, which did cause weight loss before I was diagnosed, but that’s stopped since I’ve been taking medication… Even currently when I’m pretty sure my thyroid might be messed up again (resting heart rate has been in the 90s for the past two weeks or so, with like 12-22 hours a day spent >95 bpm, and I’ve been finding it very hard to fall asleep lately… going to visit my GP soon to get levels checked).
With EOE I’m still trying to decide if I need to worry about cross-contamination. I don’t at the moment, but almond milk lattes (that use the same steamer wand as the regular milk ones) seem to bother my throat and my stomach, so I’m thinking I should. And at one point I was having outright scary reactions to dairy (hives on face, itching all over, etc.). But as you know, thinking about cross-contamination is a whole different game, and it’s so much harder than just avoiding a food. Potato cross-contamination is the reason I can’t eat at any fast-food restaurant and rarely eat out at regular restaurants. I do take risks with commercial products because so few facilities are potato free, but I’ve also had reactions to cross-contamination from commercial products, so it’s a gamble. (And of course potato is not a “priority allergen”, so it doesn’t even have to appear on a label, so I do frequently contact companies if there are suspicious or vague ingredients.)
So, currently I eat gluten-free oats, apples, pears, berries, veggies, gluten-free oats, chicken breasts or thighs, salmon, tuna, quinoa bread that is miraculously gluten and dairy and egg and potato free (tastes amazing to me, made by a local company called Glutenull), coconut yogurt and ice cream and whipped cream. Nuts and seeds, more so when I’m eating low-carb (and depends on where I am, because I work in schools where nuts are frequently banned, so in those cases I find alternatives such as making sunflower or pumpkin seed flours). Cheese is the one thing I miss. All the commercial dairy-free “cheeses” have potato in them. 
I’ve tried cashew cream cheese, but meh, the plain version is OK but the flavours taste horrible to me. I also eat diary-free margarine, dairy-free mayo (and “garlic and herb” dairy-free mayo that I use as veggie dip). I think that about sums up all the processed products I eat. Most other things I make from scratch. And when I’m eating low-carb, I make all my bread and other food from scratch, since the only low-carb breads I can find have egg in them.
It’s pretty rare, so not surprising. No one I mention it to ever knows what it is, except doctors.
I’m not sure EOE really has any connection to T1D, except that both involve the immune system attacking stuff it shoudn’t. I’ve had doctors who do not specialize in it call EOE an autoimmune disorder, but I don’t think that’s correct. It’s a type of (usually) food allergy where exposure to allergens cause white blood cells to build up in the lining of the esophagus, which causes swelling and inflammation, which leads to all sorts of nasty symptoms…
I hear the name frequently in celiac disease support groups. I wonder if it’s more closely related to CD, and then by association, T1, since T1 is so closely related to CD…
Hmmm. It appears that this is something that’s being researched.
Thanks for sharing. It’s interesting that TTG antibodies seem to be more commonly found in those with EoE despite lack of CD diagnosis. My sister had a positive TTG (but no clear symptoms of CD and no other antibodies detected), and she has an allergy to eggs (had several more allergies when she was younger), but I’ve always thought her allergy was more “odd,” as it involved more throat/GI symptoms and not so much hives, etc (unless she handles eggs and then touches a sensitive area like her eyes…then her skin reacts). The main symptom she always described was the feeling of something being stuck in her throat. She has worsening reflux-like issues now; has to avoid a lot of foods that trigger symptoms. Hmmmmm.
There’s also a very high association between EOE and other types of allergies (like IgE-mediated food allergies — the type associated with hives, swelling, etc.). Many, if not most, people who have EOE have IgE-mediated food or environmental allergies, or other allergic diseases like asthma and eczema.
I think it can sometimes be hard to tell between acid reflux and EOE. Acid reflux is a symptom of EOE, but it can also be its own condition, and acid reflux in and of itself (as its own condition) can also cause difficulty with swallowing…
Probably a gastroenterologist is the one who could best sort it all out.
Yeah, I want her to see a GI about it all, but right now they’re not in a great area for that - the last time one of my siblings went to a GI there he yelled them out of the office. She had to travel here just to see a GP about all of this to even figure out where to go from there.
Have you tried Miyoko’s cheese? Not sure if it’s available in Canada or not. I’m not vegan but many friends are and this has been a big hit for all of us. Super tasty. She also has a cookbook which produces reasonable at-home facsimiles of her commercially made products. I read the ingredients when I thought of this, and it doesn’t appear to have potato, but I think everything like that is quite sneaky. You would be the best judge of what might or might not have potato in it (nutritional yeast?). Anyhow I know you’re an adventurous cook at home, so maybe you could sub something out?
My menu planning and @TravelingOn’s comment prompted me to look at the ingredients of this brand. If it’s safe and you can get it in Canada, the cream cheese is yummy (yogurts are good, too, especially the Greek style), and I’ve wanted to try some of their other products but haven’t found them locally yet.
I’ve had some very bad appointments in my time, but…
Why?
I’m a little late getting back to this, but I know my son’s GI specialist told us there is a very high rate of EOE among celiacs. Sometimes it turns out to be the gluten that is causing it, but dairy allergies are usually the biggest culprit.
Jen, have you tried Daiya cheese? Does that contain potato?? I will have to go take a look at the ingredients. For my sons, it has put grilled cheese sandwiches and pizza back on the menu…
I used to eat this and it was great! Then several years ago I had a reaction to it, and found out that they had added potato-containing products (the dairy-free cheesecake) to their line and, although the product I ate at the time had no potato, everything was processed on the same equipment. They’ve subsequently added potato to virtually all of their products.
I’ve heard of her cheeses and even bought her cookbook, but have yet to try them (in part because it’s something like $15 for a block of cheese). I was going to leave this summer free to start trying out recipes like that (I’m a teacher so have summers off), but then I got offered a job, and free attendance to a conference/workshop, and my current work asked me to come in for a few days…so now my summer is as full as if I didn’t have a break. Still intend to try the recipes one day…
I haven’t yet seen this brand in Canada, but I’ve heard it’s good. The cream cheese I’ve been using is from Yoso (a Canadian company) and is based on cashews. It’s OK, but I’ve never been a big cream-cheese eater. So what I’m really missing is hard cheese that I can eat with crackers, on a sandwich, or in grilled cheese or pizza.
So you have to worry about cross-contamination even for potato??? I just went and looked at the ingredients of the Daiya products I have in my fridge, and 3 out of 4 contain potato starch or potato protein… but this one doesn’t. Would you still not be able to eat it??
That’s what I miss most, too. 
I’ll admit, I’ve been known to make a ham and Kite Hill cream cheese grilled sandwich out of desperation to satisfy cheese cravings…
Yeah, potato causes anaphylaxis for me, and I’m really sensitive to cross-contamination (I’ve had should’ve-used-my-epipen scary reactions from cross-contamination alone). I tell people it’s basically like a peanut allergy, but to potatoes. Daiya makes all their products on the same equipment, so even the one or two products that don’t contain potato are at very high risk of being cross-contaminated.
Also, since potato isn’t a priority allergen, there is no mandate that it must be labelled in ingredient lists. So “vegan natural flavors” in that label could actually contain potato. That’s the sort of ingredient I’d contact a company about before eating, and in my experience there’s about a 50/50 chance it won’t be potato (same with ingredients like “lactic acid”, “food starch”, “vegetable protein”, “natural flavours”, “vegetable broth”, “maltodextrin”, and similar vague-sounding things).