Anyone helped by diet?

For some years I was able to control my EM flares somewhat. Not completely, obviously. But I found out if I avoided food that contained medium to high levels of salicylates, any amines, and glutamates (not 'gluten') my flares would mostly be a lot less painful and occur quite a bit less. It was usually when I tried new medications I'd sometimes run into trouble. I'd still get hot and often red and feel too overheated, but the sunburned feeling and my problem with finding clothes soft enough that didn't hurt my body and sheets that didn't 'cut' into my skin -- that sandpapered feeling -- would, for the most part, play up only when I went ''off the low salicyate, no amines or glutamate diet.' I didn't push for a medication remedy because by denying myself a great variety of foods I could keep the EM under control to a 'good enough' degree. Despite my eating practices becoming so distorted and unhealthy (Thank the gods, for vitamin tablets) the EM flares have become much more pronounced and painful anyway. This has occured over the past few years. I've spent over 10 years on the diet but now am faced with feeling a lot of EM pain anyway. However, when I try to go off the diet and resume a more healthy normal way of eating I end up in 'my' extreme level of EM pain within hours. Sometimes a new medication, like an antibiotic can cause the same extreme sandpapered burnt feeling, also.

And I've had to restrict the variety of my diet even more. For example, I was able to eat white sourdough bread but realized it was making me flare a bit more red with more pain. So I cut it out for 2 weeks, then two days ago I started eating it again, and last night had a worse than usual night and woke up this morning and finally took a look in the mirror and I'm red, my neck and face and back arms are sore. I'm experiencing the sort of heat and that a block of chocolate, or a fresh tomato or some rye bread, etc used to cause.

I'm hanging out until August 20 when I see the doc who diagnosed my EM so that I can get some medication for it -- time to try the medication route and hope I get some relief.

I suspect that by cutting out so many good, healthy foods so many years ago on the advice of one of Australia's very best hospital's 'allergies and intolerances clinic' I have made myself more sensitive to foods and meds than if I'd just continued on my 'nomal, healthy eating' way of living that I used to follow and enjoy. It's so confusing and I'm so tired and I'm so sick of eating this dreadful diet that has to be followed to the letter to be just healthy enough (I'm not the only one, the clinic is now experiencing a lot of backlash from other hospitals and doctors and allergists, (not all, but some), as the diet is seen as being too restrictive and often completely unnecessary unless you have true allergies to foods). The clinic is also conceding that restriction of foods can, in some people, make them more reactive when they try to reintroduce those foods into their diet. Which is what happened to me. Plus you would think I'd be a skinny thing but due to a weight inducing medication and the diet which is heavy in white sugar and dairy (in my case I can eat dairy) well, I'm no longer the slender person I used to be.

I guess I'm saying, be judicious about 'diets' to cure. As you may just end up making things worse in a desperate attempt to make them better. As has happened in my case. Eating used to be about fuel and pleasure for me. Now it's eating the same very limited variety of food day after day (thank god for vitamin tablets) and don't even think about eating out. For example, on Christmas Day at my sister's place I took my own egg and lettuce sandwiches (on 'allowed' bread) and ate that while my family a very yummy looking Christmas dinner. There was not one thing I could eat on the table if I did not want an intense flare. I certainly did not want that because the day before I'd had an intense flare that turned out to be caused by the new generic version of a medicine I'd always been used to taking. They'd taken the name brand off the market and I had to buy the generic brand and one of the excipient ingredients (neither my allergist or myself was able to pinpoint which ingredient) in the generic form caused a flare. Luckily I was able, after a month of my research and the knowledge of my allergist, to come up with another generic version I could tolerate.

I've hated having to follow such a restrictive diet for 10 years. It means never eating out, always having to be very careful what I cook at home. Most people can't successfully stay on the diet. It was just that the pain of EM was so horrible that I stayed on the diet. Now I get the pain and I still have to stay on the diet because when I go up it makes the EM pain even worse.

That was the reason for finally looking for a forum for EM. I'd run out of options. Until I see my EM specialist in August and we start talking about trying medication for it.

It was a bad night last night. I'm fascinated how I can wake every hour or two 'on fire' until about 5 or 6 am when I wake up too cold - it's winter here in Australia -- and have to pull a small blanket over me to feel warm enough to fall back to sleep. Crazy stuff. I wouldn't believe it if I'd never experienced it.


I've hated having to follow such a restrictive diet for 10 years. It means never eating out, always having to be very careful what I cook at home. Most people can't successfully stay on the diet. It was just that the pain of EM was so horrible that I stayed on the diet. Now I get the pain and I still have to stay on the diet because when I go up it makes the EM pain even worse


Sorry, people the above is a bit of my original post. I can't find the 'edit' button for some reason. The underlined bit. I meant:

'when I go OFF it (the diet), it makes the EM pain worse.'

Brain fog is bad today. It's because I'm having a bad flare day and the ongoing interrupted sleep is exhausting me.


I tried the elimination diet on the recommendation from my doctor with the help of a dietitian. The whole process took a little over 3 months. I don't know if it was exactly like yours but it was the strictest version of the elimination diet. I could have no gluten, ,sugar , meat , eggs , dairy , soy ,alcohol, certain fruits and vegetables were also off limits. There was quite a bit more off limits I just can't remember them all. It would probably be easier to list what I could have.

We were trying to see if any particular foods were making my symptoms worse so I omitted them completely for the first 6 weeks then one by one reintroduced them into my diet. In the introduction phase I would choose one food from the list and eat it 3 times a day for two days to see if I had any reactions. I would then remove that food wait 3 days on full diet then go on to the next off limit food. It was extremely hard to stay on it but you couldn't stray a bite because it would make all you have done be for nothing.

In the end there wasn't any food that made my symptoms worse except for alcohol surprise surprise and I still avoid that as I am sure most of us do. Because changing my diet didn't make any difference I just went back to normal. I had mixed emotions when doing the diet. I hoped for a certain food to be causing it so I could just stop it and be better but I still didn't want that particular food or foods to be anything I really enjoyed ! I was hoping something I didn't care about would be the culprit! In the end it made no difference and my dietician said she isn't that surprised because unless I had a food allergy or sensitivity it probably wouldn't make much of a difference.

I am sorry you have had to do this crazy diet for so long and maybe forever. It is hard enough to do it at all and then in the end to have it not help if not hurt must be heartbreaking.

Thank you for sharing your story with us. You could very well have saved someone else from going down the same path. I never would of dreamed that it could have any kind of backlash effect. I hope you find some medication that helps you and hopefully it helps enough you can start slowly reintroducing some regular foods back into your diet.

Take care,


Thanks Alina

When I saw how long my post was I was embarrassed. Sooooo long. But it was so hard to explain what had happened in regards to the diet and EM flares over the past dozen years or so. Reading your response, I can see you understand what I was trying to describe.


Don’t worry about the length of your post . If you take a look at mine a majority of them are as long if not longer!
Take care,

Certain foods flare me up more than others, or if I eat the same thing too many days, weeks, too often I think it can start to flare me up. I'm glad I'm writing this because maybe that's what's happening right now with my favorite bread. Might be time to switch it up for a while. Some red wines flare me up worse than usual, so I try to avoid those--the histamines in the grape skins.

Certain foods flare me up more than others, or if I eat the same thing too many days, weeks, too often I think it can start to flare me up. I'm glad I'm writing this because maybe that's what's happening right now with my favorite bread. Might be time to switch it up for a while. Some red wines flare me up worse than usual, so I try to avoid those--the histamines in the grape skins.

Realizing how weird that might sound in another context--the bit about eating the same thing...but really, I'm just being honest, it's one of my theories. I've got some allergies--severe latex allergy, allergic to some meds--all my allergies have been like acquired over time, lots of exposure. And for some reason, maybe it's a kind of stress response, when I get too routine for too long with food, maybe my body is like, Time for variety, woman!

Monkey said:

Certain foods flare me up more than others, or if I eat the same thing too many days, weeks, too often I think it can start to flare me up. I'm glad I'm writing this because maybe that's what's happening right now with my favorite bread. Might be time to switch it up for a while. Some red wines flare me up worse than usual, so I try to avoid those--the histamines in the grape skins.

Not so weird. There is a theory that some people can eat the same food repeatedly but then they reach a threshold and that's when they tip over to intolerance and start reacting to things. If you mix it up you might not eat enough of one thing to reach tolerance (or intolerance,really) threshold. threshold can change over time. The theory also goes that tolerance threshold can change over time. A person may have a lower threshold at one point only to have a higher threshold at another time. Or visa versa. The theory also holds that staying on the elimination diet too long can make someone more sensitive to the foods they have been avoiding. They did not realize this when I went on, and stayed on, the diet.

The criticisms of the diet is that people can end up not getting necessary nutrients and that evidence of the diet being scientifically sound is just not there as it is too subjective - no proper scientific placebo studies.

I really wish I'd stuck with 'a bit of everything in moderation.'

I too have acquired many allergies over past 14 years. I'm 58 and until I was 44 I was not allergic to anything. I'm still not allergic to any foods, knock on wood.

I have lots of allergies too. My only food allergy is gluten intolerance... although I'm afraid I might recently have become intolerant of milk products too (sob sob). I am temporarily off them and will try restarting in er... a while, lol, I haven't decided when yet. The thought of having to be GFCF kills me; I love cheese and yogurt so much. But I don't want to feel crappy either- sigh. I had total resolution of all symptoms for 8 years when I went off gluten, but on the other hand, I'm likely to eventually become allergic to anything I encounter too much, so if I keep eliminating things, eventually there will be nothing left (much as you describe above). It's a tough decision.

Have you seen any of the posts on Mast Activation disorders? I am completely new to the EM diagnosis, and am just starting to try to pick which meds to try first. And when I compare the cost/benefit ratio of each line of treatment and my own personal symptom set, I'm thinking the protocol for Mast Activation disorders might be the best first pick for me (its: claritin, zantac, singulair & vitamin c, plus treatment of symptoms individually as needed). I wonder if maybe an aggressive antihistamine/anti-allergy treatment like that could be enough to help individuals like you and me be able to eat (and breathe) things we otherwise couldn't.

Hi laurie,

Actually I was just exchanging emails with my allergist. We are looking for a way to get me back onto H1 and H2 blockers on a long term basis. (Whoops just realized my feet are down and the burning has started -- damn it. Sometimes I still forget). My experience has been that I try one medication for a symptom and it seems to make another symptom worse. This is what happens when I take zyrtec and zantac. Obviously, this does not mean it will happen to you. And so many people with mast cell problems do get control with the meds you mentioned.

Singulair was a bust for me. It made my migraines worse. I need to retrial sodium cromoglycate. I believe it made my flushing worse but it could have been something else at the time. I was warned off taking big doses of vitamin c by my allergist -- she was worried I'd react. (I did react with lots of flaring to a vitamin B injection years ago). If I take prednisone I will get some relief -- it takes about two hours to kick in and then I get about 4 hours of no flaring - not enough to make up for the nasty short term and even nastier long term side effects it can cause. I get incredibly anxious on it. Jumpy and can't sleep and I do go a bit nutty. I do use H1 and H2 blockers and prednisone when I have to have dental work to help prevent allergic reactions. But can't tolerate those meds long term, as yet.

You said you were gluten free for 8 years and had total resolution. Does this mean you are still gluten free but experiencing EM now, anyway? I tried gluten free for 3 months but it didn't make any difference. I would dread having to be dairy free. When I first went on the elimination diet I was dairy free for nearly 2 years and I missed my dairy. I put it back into my diet and did not experience much of a reaction ( I suspect the small reaction I experienced at first was possibly psychological but I don't know). I don't want to take dairy out of my diet now, for so many reasons. Not only do I love my dairy, I'm getting very stubborn about what more I can take out of my diet. My dream is to eat normally and have a life. I think I'd have a chance at that if I could find a way to tolerate the mast cell meds long term.

Honestly, if prednisone controlled the flares around the clock instead of just for 4 hours I'd probably take it and live with the consequences.

I'm just so confused. POTS, EM and probable Mast Cell Disorder. What lies beneath????


Ugh, Blue, Ugh. For me, I've got a really clean diet--and have for most of my life (I'm 42)--but I do eat a broad range of foods. I cook pretty much everything myself--all organic, farmer's market or my co op. Plenty of nutrients, lots of calories, no sugar except for fruit. Lots of good dairy, organic, local meats, pasture raised eggs. I've tried doing eliminations, but can never tell if a specific food causes a worse flare (soon as I start my day, the heat begins, or cold if it's winter). I do have very low body fat (I'm a cyclist), which I think adds some stress to my body. I do physical therapy in my house (core stuff with the fit ball), good breathing techniques, all pain management stuff so that I can survive. I had chronic pain throughout my 20s and 30s, which is gone since I've started the PT with the ball routine. Like I said, the over-exposure to one food (specifically wheat) is a pet theory and then certain zinfandels or just too much red wine (tannins). But I throb every evening regardless. I was able to gain some fat when I was doing fertility treatments a few years ago and my flares seemed a little calmer then. I'm always working to gain weight, but even with 3000 calories a day, I don't really budge. The bike is my major passion and I have a massive burner metabolism (I'm tall and muscly). I wonder if there's a way for you to introduce one new food and see how it goes for a few days? You've probably done that. So sorry about the pain and sleepless nights.

Thanks Monkey,

I experience what you describe. Flares regardless - so it's hard to tell if it's something I've reintroduced into my diet or just a flare. Sometimes I can tell though, because I experience more episodes of pain levels like Mads and dkel describe. Yesterday I was almost totally convinced my new bp medication was causing more flares. Today I'm highly doubtful. I just don't know.

I'm reading and rereading your post and can see you really have got yourself to a place where you are managing this illness despite pain. It's quite inspiring. I have my first appointment with a psychologist today who works with people with chronic illness and pain. I'm hoping I can turn my thinking around a bit. Give myself a fresh way of looking at things. So that I can work out what I can change and what I can't and follow through. Hopefully.


Yes, that's key for me. Managing, balancing, and I keep moving. Not all the time, lol. For sure I just sit--feet elevated--in the evenings. But I get up about every 30 minutes. I'm much more a morning person than I was in my 20s and 30s, so I barely go out at night anymore. As far as daily moving/exercise, it's saved my life for sure. I've always been an athlete, so it's like a religion for me. I always felt that if I gave up and didn't move, then the pain would increase and debilitate me completely. I'm not talking about that stupid no pain no gain thing. That's a crock of bullshit, of course. I'm about no pain no pain. I have modified my lifestyle in a lot of ways--I work part time only so I make less $$ than I used to, but it's so worth it for me. Seriously, my body hurts in the morning before I start my little PT and breathing movements, and so often I just don't want to do it, but I do it and my body, save for my hands and feet, is pretty much pain free and agile and I can bike daily and stand without shooting pain response to life in this weirdo body of mine.

And, yep, I've been seeing a shrink for, well, I bet 15 years now. Only twice a month these days--just adds a little more feedback, helpful structure. It's a process--learning to understand your own patterns is the most gratifying but very difficult part.

I'm glad you wrote me, blue.

Hi monkey,

I've been seeing a great psychiatrist for years and he is lovely with a great sense of humor but also very empathetic. I decided though to try adding in the psychologist to see if I can learn more practical day to day ways and routines to get myself motivated again for the umpteenth time. Essentially I hope to address how to stay motivated when things are not so good. I saw her yesterday evening for my first appointment and my first impression was that I liked her and that she seems to to understand and agree with what I'm looking for.

I've started today well with a walk to my local shops and back. Now I need to do two X 8 minute mindfulness meditations. I used to do these things on my own but I need someone to report back to at this time.

I also spoke to one of my docs today and we talked about me putting back some different vegetables into my diet. I'm pretty sure my skin is going to react with flaring but hopefully I won't find it intolerable and will gradually start opening up my diet and get back to my old very healthy eating way of life.

Your posts have been very encouraging. I,myself glad you wrote me too :)

Ta, blue

Keep your diet clean, try to stay organic as much as you can, stay away from high histamine foods, spicy foods, salt, alcohol, and any food allergies. Lots and lots of water to keep hydrated.

I can't eat gluten or dairy, but that's due to allergies. I have noticed that the nightshades make my EM worse, so I wont touch any of those anymore. And eating/drinking anything with a hot temperature makes my face and upper arms flush, so none of that. Not that I ever liked hot temp. food anyways. My food list is shrinking daily! I eat tons of orange Jello. I think I keep that company afloat all by myself.

Thank you Laurent and twinkle toe for your input. If I could turn back time I would use the approach suggested by Laurent in regards to food. Twinkle toes, i can't drink or eat anything hot - lukewarm I can tolerate. And hot as in spicy is definitely out now.


Thank you for sharing your experience, blue! I've started eliminating lots of foods but maybe it's not such a good idea after all!

Im helped by diet. Processed Grains usually provoke flares in my feet, and ears. Other foods with a high fat or sodium content cause me to flare up due to them increasing my body temperature. I avoid processed grains, nuts, and sugar.