One week in

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1

Well, one week into the diet my allergist asked me to follow (no wheat, milk, eggs, peanuts) and I am feeling great! The first few days were really hard because I couldn't find anything - I hardly ate on Friday and that made my stomach hurt really badly on Saturday through till Monday! Not sure I'll do that again ...

Anyway, since starting this a week ago I've noticed a few interesting things:

1. I am WAY less itchy. I used to have an itchy back, arms, and scalp on an almost daily basis and broke out in random rashes and hives fairly regularly. In the past week I have only gotten itchy once (see below).

2. Although I am still having EoE symptoms (swallowing difficulties and heartburn) they have improved. For the first few days I noticed no change; most of the change has been in the past day or two, so things may improve even more over the next few days.

3. For the past few days I have had to lower my insulin settings a lot because I was having massive lows after meals (like dropping to 2.3 - 2.9 at two hours and having to eat a second "meal" just to stabilize). Even with that my blood sugars are great.

4. Initially I was having problems with high blood sugars after meals, btu I'm finding as long as I weigh/measure absolutely everything before eating it (meaning NO guessing/estimating at all) my blood sugars are great. Since I have not attempted to eat out and have been preparing all my own food, this is time-consuming but not overly hard.

5. My stomach used to hurt every day, and I used to get acid reflux on an almost daily basis (never had acid reflux before a year ago, but it's an EoE symptom and I developed EoE symptoms five or six years ago). For the past few days my stomach has not hurt at ALL, and yesterday I had very mild acid reflux and today I have had NONE. Today I think my swallowing symptoms may be improving, too.

In addition to skin tests, which had small reactions for milk, eggs, wheat and peanuts but no reaction to soy or shellfish, my allergist also ordered blood tests of IgE antibodies. IgE is the antibody that attacks external substances like food or pollen and is responsible for allergic reactions. Out of eight foods he tested, seven were positive! Negative is below 0.35, and the salmon was the only food that came up negative. Eggs were only mildly positive at 0.53. But peanuts were 1.14, wheat was 1.06, shellfish was 1.10, sesame was 1.30, and soy was 0.97. So my body is producing antibodies against all those foods, but whether they are actually causing reactions that trigger EoE isn't known yet.

I told the allergist that I have been avoiding drinking milk or things like lattes with milk for years because it seriously irritates my throat and lungs. It makes my throat feel like it's filled with mucus, makes me cough and wheeze, makes my voice strange sometimes, and makes my stomach incredibly upset. I still ate cheese and Greek yogurt, but they made my mouth and throat feel irritated, so I was suspicious that I might have an allergy. Well, the blood test for milk came back as significantly positive at 4.75.

The one "cheat" I did this week was licking a dab of milk-based pudding off a spoon. I said above I have not been itchy all week. Well, about 30 minutes after doing that my back and arms itched like crazy! So between that and the blood test and my past symptoms, I'll see what the allergist says, but I'm pretty sure I have a "true" milk allergy. So I will be very cautious with milk, as IgE-mediated allergies are the ones that can provoke life-threatening reactions. That would bring my "true" IgE food allergies to three (potatoes which is life-threatening, and banana and milk). Of course, I don't know how many foods might be triggering my EoE. My allergist said if I strongly suspected another food was triggering it I could eliminate it. I think if I'm still having symptoms in a day or two I will eliminate sesame, as it was the next highest on the blood test.

Up until a few days ago I was feeling so frustrated with this whole thing. But since my symptoms have improved a bit I've become so hopeful! I am still having allergy symptoms due to environmental allergies, even with taking three medications, so I'm getting more strict about trying to control those and avoid allergens. Hopefully when I see my allergist in three weeks some of the inflammation he found in my nose and lungs will be under better control. He'll be the real one to interpret the blood tests, too - I'm just going on an educated guess.

I am going to two conferences in the next few weeks. I ordered a cooler tote off Amazon because I think I will be bringing most of my own food. I used to hate having to pack a suitcase of food before I was on MDI, but it looks like I'm back to having to do that. I have not ventured to eat out yet, and will probably try to do so once before I travel so that it's not so nerve-wracking. :)

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Jen, I hate that your having to deal with this, but I am really glad that you're figuring out what your triggers are. I don't have any "true" food allergies, but gave up most grains, including wheat, and dairy, as part of a "temporary" eating plan a trainer recommended about four months ago. My blood glucose levels have never been better, so I'm sticking with it.

3

Hi Jen, That is great that this new diet is helping you a lot! I may get the blood tests too for allergies, only had the patch tests, to see if there are foods that are affecting me also. I would be upset to eliminate milk, but I've heard people who are gluten sensitive often also have a problem with milk.

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Hi Jen. This experimentation time is so difficult--I remember trying to figure out what foods I have problems with. I had Celiac Disease, so have a problem with gluten + soy, corn, some nuts, some shellfish. I never quite know what is safe!

Hi Meee. If one has a problem with gluten, the villi are affected; that causes a problem with lactose and absorption of nutrients in general. If one then goes gluten-free, sometimes the problem with lactose stops, and one can absorb nutrients again. I eat no gluten and have no problem with lactose, milk, etc. I do need to take Hcl, enzymes and Beano.

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@Sarah: I'm finding the diet not too hard, actually. My main difficulties are that I can't drive so it's hard to run around to a million specialty stores, and I'm visually impaired so it's hard to read ingredients while shopping. I'm also finding 90% of gluten-free products have potato in them, it seems, which is really annoying. Our local grocery store has a big gluten-free section, but between potato starch, milk, eggs, and peanuts I still couldn't eat anything in it!

@Meee: I've wondered about the patch testing. In my reading about EoE it says that because it's a mixed reaction involving both IgE antibodies and T-cells, the IgE testing alone isn't entirely accurate, and talks about patch testing. I'm not sure if my allergist will try that. I am very motivated to control EoE with eliminating allergens, though, because the alternatives mentioned by my allergist and gastroenterologist were swallowed steroids and esophageal dilation. I've done both of those once and that was enough for me! But the tough part is that there are people with EoE who can literally only eat 10-20 foods, so once it gets to that point it's medication/dilation or barely eating.

@Trudy: You are right, the hardest part of this disease is that there are no "easy" answers like with diabetes or even Celiac. They know that food triggers the immune system in EoE, but the specific foods are different for everyone. But I'm glad that I seem to be getting to a stage where my body is no longer in a constant state of reaction. I'm finally beginning to have periods where I feel normal, even if I do still have symptoms daily. At least now I can differentiate normal from reactions and hopefully track down foods causing them. I definitely feel like there's a food or two that I still need to eliminate. I'm pretty sure my allergist will want me to trial these foods back once I am symptom-free and get a biopsy that shows no eosinophils, to see if I they are actually causing symptoms. Except for milk, I can foresee him telling me to continue avoiding it or else doing a medically-supervised food challenge in case of a severe reaction.

Fortunately, I've discovered a group on Facebook for adults with eosinophilic gastrointestinal disorders (of which EoE is one) and that has helped tremendously! Reading and participating on that group over the past two weeks has helped me figure out what reaction symptoms might be and figure out that my body was basically reacting continuously up until a day or two ago. Like the DOC, that community has provided me with a feeling that I'm not alone. I would be lost without that group!

My biggest hurdle next will be going to conferences and also eating out. My allergist said I do need to be careful about cross-contact and trace amounts, as even that's enough to trigger eosinophils. And the past few days I have had the BIGGEST sushi craving but can't find a single type of safe sushi. But I am SO GLAD I have a doctor who understands even complex multi-allergy issues and is willing to work with me.

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Further confirmation: My mom came over this afternoon (she has been a Godsend helping me shop for food!!) and without me even saying anything about how I'm feeling better, she said that my face looked better. It used to always be bumpy and constantly have rashes (probably eczema although I've never had it checked out). I hadn't even noticed this. I do have a few patches of rash, but overall my face IS way better.

7

I think the patch testing is only 70% reliable though which my eye doc agreed with... and it only showed I'm allergic to some grass pollens which I know for sure isn't true.. I have dust and many other plant allergies. It was also horrible- you have these patches all over your back for 2 days! Very itchy and uncomfortable.. and very expensive. That is so good your face is so much better!

8

Ha, well I spoke too soon. The small spot of rash on my face has now spread to cover my entire cheek and my other cheek is developing the same thing! I'm also back to heartburn constantly and swallowing issues. I'm pretty sure the rash is eczema, but I've never had it this bad before, and unfortunately my GP is out until mid-week next week. I may call my allergist and see if he can look at it. The ONLY thing I ate differently that I can think of is I had corn-based cereal. If I'm allergic to corn, too, that will vastly complicate my diet which I just feel like I've figured out.

Apparently the IgE skin and blood test are only about 50% reliable in people with EoE because the allergy is triggered by a combination of IgE antibodies plus other things (I think maybe T cells). I think patch tests are also inaccurate, but I read one study where they combined skin or blood test restuls and patch test results and it was something like 75% accurate. That's one of the most frustrating things about this, they know it's triggered by food but don't know what food(s), and it's different for everything, and they don't even know how to accurately test for the allergens except through trial and error. But hopefully I will figure it out eventually.

9

oh no :( I hope you get something to help control it soon and figure out what is causing this. I once had a terrible, itchy rash on my legs for 2 months which I never knew the cause of and then it vanished. Lately I've had a strange rash on my ears on an off and I'm sure it's from my ear plugs that I need to sleep. I use either an otc antibiotic ointment or a steroid cream on and they both seem to help, but it keeps coming back.

I agree that allergies, especially food allergies & sensitivities, are very tricky to figure out and very variable too. I will react to ice cream most of the time but not to yogurt most of the time and I never know why. I do react to corn but not to popcorn most of the time.

I will never get patch tests again because they were so uncomfortable, unreliable, the allergist was a total idiot about the results, in addition, my xbf and I had a huge fight when we got lost on the way there- just a bad memory overall.

I never would have had them done if my eye doc at the time hadn't insisted on them before rxing a compounded eye drop. He wanted to see if I was allergic/sensitive to the preservative. I already knew I was because I had had a bad reaction to the non compounded drops and then of course when I got the compounded/diluted drops without no preservative I had no problems. Sometimes it is just easier to try things out and see what happens based on what has already happened. He also said you can have "sensitivities" to things which behave like allergies.

10

Hi Jen, I'm hoping that more information will come your way. I'm used to diabetes changing (just went up by 1 1/2 units on my basal), but it always surprises me when my food problems change. For instance, corn has been a problem for years, but recently I discovered I could eat Doritos. Ummm, maybe that's not so good?!!!

Hi Meee. About ice cream and yogurt--ice cream has lactose, yogurt and hard cheese do not. There is actually a lactose-free ice cream for sale in large groceries, might be worth trying.

11

Meee, that patch test experience definitely doesn't sound fun. I don't blame you for not wanting to go back! And Trudy, that is great about corn, well kind of ... :) I'm sort of glad I'm deathly allergic to potato for similar reasons. No temptation to cheat there and it sure it helps my diabetes!!

All I have ever dealt with up until now are IgE allergies which are easy to figure out because the reaction is so quick/intense after being exposed. EoE is a delayed reaction that can happen hours to days after eating. So is it corn, soy, sesame?! I'm going to try avoiding my cereal for a few days (and hopefully the other stuff I'm eating has no corn) and see if that improves my symptoms.

At the moment I'm pretty much avoiding the top six most common allergens (eggs, wheat, milk, peanuts, fish, shellfish), and I've been reading that a lot of people with EoE are intolerant to the top 8 (tree nuts, soy), so I'm thinking I might eliminate those, too. I need to get to a point where I'm not having constant symptoms so that I can then reintroduce foods and see if they are triggering reactions.

Gah, I REALLY do not want to be one of those people who reacts to 10+ foods, but I'm nervous I'm heading down that path. :S And from what they know so far, EoE is chronic and for life, not something that improves.

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Yes, I credit that doc with contributing to the demise of my relationship and I will never let that happen again! I fortunately don't have IgE severe reactions, just the other ones. I hope over time you get this figured out. Sometimes the longer I'm exposed to something the stronger the reaction gets though as with cassia obovata which I use to condition my hair- I take some benedryl when I use that.

I think eliminating things will help you figure it out, EoE sounds horrible. But I think there are plenty of other things you can substitute for the foods you're eliminating. You just find them and you have to stock up on them if they're hard to find. Did they test you for gluten/wheat? I found eliminating that for the most part has helped me a lot although testing I had done in the past didn't show I was sensitive to lactose or gluten I know from symptoms that I am.

Trudy, I'm not sure about the dairy issues, because I can drink normal milk, it just seems to be ice cream that does it although sometimes milk will too. I don't eat ice cream anymore, it has way too much sugar added in and unfortunately there are no good tasting low carb/sugar substitutes out there but I plan to make my own ice cream with heavy cream( I can have that too) and stevia to sweeten it. I should have done it a long time ago, but to be honest I miss it but I'm ok without it although I have felt a craving for hagen daas lately :) Every time I see something I really want to eat like that, potato chips are another one, I think of what I have to do with the bg issues and I can't be bothered to deal with it, most of the time it's not worth it.

13

I got a skin test and blood for wheat, but not gluten. Both the tests were positive, so wheat is one of the foods I'm currently avoiding. Having this has definitely made me eat stuff I've never had before, and I'm definitely using my stove and oven more, which isn't a bad thing. I'm going to a conference next week and another a week after that, and I'll be bringing my own food to both of them, just trying to plan out what to pack and/or what I can purchase locally, if anything.

I just found out that apparently there's a debate about whether EoE is an allergic condition or an autoimmune condition. Not that it really matters in my case, as I'm predisposed to both!