Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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Eating Out With Food Allergies...

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Misfit Toy, Jan 30, 2017.

  1. Misfit Toy

    Misfit Toy Senior Member

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    How many people can't eat out, or can only eat out at very few restaurants? Since having my thyroidectomy, my food allergies have become out of control. My body is having a field day. Food and medicines...

    I went to dinner tonight, had Chinese...shrimp with broccoli and in a white sauce. Never go out anymore. Up all night long itching and now a migraine. Can't get away with any foods that I could handle before. NONE. I had sensitivity before. Now, it's all out war and allergy.

    How many can't eat out? Or, can only go out to so few restaurants?

    I have no clue on how to treat this. I am going to be tested for Mast Cell.

    I can't even have the most favorite food...chocolate. Allergic to milk and soy and milk and soy is in every form of chocolate including dark. Than you have chocolate Liquor in dark chocolate. Nope.

    Do have a lot of yeast. Bone broth...hmm...just what does it do because I notice nothing. Plus, I get tired of consuming it. On a great probiotic, but what is it doing? I have no clue. Can't consume yogurt due to milk and goat allergy. I am not supposed to have fermented foods at all.
     
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  2. Hugo

    Hugo Senior Member

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    Candida can cause a lot of weird reactions was my experience after a long antibiotic course. Thornes sf722, lauric acid in time delayed capsuls and lots of Pao d arco tea is effective and some conventional meds aswell.

    I can eat in some resturaunts now but couldnt before with my GI candida. Now I can eat food with fish, vegetables, meat (but generally dont choose that), potatoes (not to much though and not fries). Some buffet food can be good since you can choose what you want. Sallads is ok aswell if they dont have milkproducts in it. When I take some coffe I dont eat cookies but there are other things like chiapudding and they have a great version in the cafeteria near where I live. Also smothies with only vegetables and some fruits are good.

    But sometimes my stomach dont agree with me and then its just a few things that works. Mostly just basic foods and chipudding for example. I can for example in a good day eat in Burger King or something similar but generally I should avoid that.
     
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  3. Joh

    Joh Inactivist

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    Hi Misfit Toy,
    From one chocoholic to another: Maybe it could be worth checking out vegan chocolate, there's for example rice milk chocolate without milk and soy. :)

    I can't go out for dinner at all at the moment, but I like vegan restaurants because they usually know exactly their ingredients and are willing to cater to special wishes like soyfree, nutfree, glutenfree etc.
     
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  4. Hugo

    Hugo Senior Member

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    There are some great chocolates but unfornatly I notice that even chocolate itself could cause some irritation in my guts. This one is very good for food sensitivity.. no sugar, no milk, no soy http://www.nutri-nick.co.uk/dark-stevia-chocolate
     
  5. Misfit Toy

    Misfit Toy Senior Member

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    I am thinking I need to be tested for histamine intolerance. I have full on histamine overload. I don't even know who to go to for this.
     
  6. erin

    erin Senior Member

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    I'm very allergic to Chinese food. I love it but I don't eat it anymore, especially in an authentic chinese restaurant. I make it myself at home and it is not as good as the authentic chinese food. I bought gluten free soy sauce which helps and can not use shellfish sauces.
    If I need to go out dining I stick with plain food. Grilled fish and salad is my usual choice.
     
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  7. ryan31337

    ryan31337 Senior Member

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    I'm in the same boat. With an incredibly restrictive diet I can keep it under control, but if I overexert it doesn't seem to matter what I eat...on come the cramps, bloating and itching regardless.

    Forget conventional medicine (Gastroenterology) unless you know of one that takes a special interest in this. I'm seeing a nutritionist with a leaning towards functional medicine later this week, hopefully they can shed some light. All I know so far is that the list of possible causes is endless!
     
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  8. snowathlete

    snowathlete

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    Since I got ulcerative colitis I have loads of severe food intolerance. I figured out what most of them were with a careful exclusion diet. It's mainly unnatural ingredients that cause me problems, but loads of places use them so I have to be really careful. I only eat out when I have to. At Christmas my brother arranged a meal on boxing day. I contacted the restaurant but had a nightmare just trying to get them to tell me what ingredients were in the thing I wanted. They basically didn't know and seemed unwilling to find out. They said not to worry, they would cook me mashed potato with whatever the meat was and a fruit salad for desert. I told them to stuff it in the end and didn't go.

    Honestly, the only way I can keep safe is to make stuff myself. Even family who try to accommodate me just aren't aware enough of what stuff is hidden in foods to check it to see if it is safe for me. Diet is basically how I avoid getting a flare of UC and a worsening of ME symptoms alongside it, so it's pretty darn important.
     
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  9. Misfit Toy

    Misfit Toy Senior Member

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    Within minutes after eating that Chinese food, I got sick. My intestine felt like it was being burnt and then I felt cold all over. It was the weirdest thing and I have eaten there before and never had that. I have so many problems that at this point, my already functional medicine doc is dealing with so much just trying to get my thyroid meds right. I am allergic or reacting to all medicine.

    It's like I almost feel like I need to go to another functional medicine doc to deal with the allergies, or mast cell or whatever this is.

    At this point, I can't go out for dinner. There is just no way. Not just because of what can I eat, but I am too sick.
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    @Misfit Toy Chinese food often contains MSG which can be a major trigger of allergies even in someone who does not have MCAS. Shrimp and fish are also very high histamine (unless literally just caught off the boat and prepared LOL). So you might be able to tolerate lots of other types of restaurants but avoid Chinese food and shrimp/fish?
     
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  11. Misfit Toy

    Misfit Toy Senior Member

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    Yes, I never eat at Chinese place and a year ago my friend ordered what I had the other night and I was fine with it. So, a few months ago I tried it again and was....fine with it.

    You know how this can be, Ginger. It's like one time you are okay and the next you are not. BUT, I will never have Chinese food again. That's that.

    I remember you saying you had a lot of help from Quercetin. Did you buy a specific brand, Ginger? I am on the ketotefin as of yesterday. I am seriously "on this" whole mast cell thing because this is leaning on going to how you had it. I am becoming sick from just about everything and am in my pajamas mostly now and unable to leave my apartment unless it's for an errand, which I have no choice in doing since living alone.
     
  12. mirshine

    mirshine Senior Member

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    @Misfit Toy could you get a referral to an allergist team in your local hospital? My 2 year old has been attending for a year, they're fairly some tests, for her age anyway, and quick results.
     
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  13. Misfit Toy

    Misfit Toy Senior Member

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    @mirshine -I have to go into the city to an immuno. She is thinking of sending me to the NIH. National Institute of Health.
     
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  14. mirshine

    mirshine Senior Member

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    Hopefully they'll do some tests on allergies and can figure something out for you. If things are that severe umyou would imagine allergies should show up quite easily. Good luck. Do you know how long you'll have to wait?

    Oh, and love your Bowie grumpy cat ☺
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    I have used 2-3 different brands of Quercetin in the past but the one that I like the best is called "Quercetin plus C" and it contains both Quercetin and Vitamin C in a "Citrus free" version. I get it from the "Vitamin Shoppe" but am not sure if this is a local chain or nation-wide. I can eat citrus now with no issues but originally I couldn't which is why I liked this version.

    There was a point that I was taking 2000 mg of Quercetin per day but now am only taking 500 mg. I also used to take NeuroProtek which contained additional Quercetin (plus some other ingredients) but I no longer take it. My MCAS/food reactions have been in remission for about six months since I started IVIG. But I continue to take the basic MCAS meds like Zyrtec, Ketotefin, etc, daily so not sure how it would be if I stopped them. But since it is working, I don't want to mess too much with it!

    But I still avoid MSG, food dyes, preservatives, IV contrast dyes, and the very highest histamine offenders per my doctor like spinach, red tomatoes, fish, etc. It's very possible that I could tolerate these things now since I have not had a food reaction in six months but am hesitant to rock the boat and find out!
     
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  16. Barry53

    Barry53 Senior Member

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    Does anyone know if ME/CFS sufferers have a significantly higher incidence of food allergy and/or intolerance, compared to the normal population?
     
  17. Gingergrrl

    Gingergrrl Senior Member

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    I do not know any statistics but according to my ME/CFS doctor, a huge percentage of his patients also have MCAS. In my case, I did a phone consult with my doctor yesterday, and he no longer feels that ME/CFS is my diagnosis and I agree with him 100%. I do, however, have MCAS which is currently in remission but I will never say "cured" and believe that it could return although I pray it does not. At my worst, I was hospitalized with anaphylaxis to all food but water and had moments that I thought it was going to kill me.

    We are now calling my illness both an autoimmune disease that has no official name and a "B cell autoantibody dependent disease" b/c I have eleven different autoantibodies that do not necessarily fit together. They cause autonomic dysfunction for me including POTS and breathing/neuromuscular weakness. But none of the other traditional symptoms of ME/CFS. We initially believed ME/CFS was my diagnosis but now feel my case is even more obscure!

    But to get back to your original question, from discussing with my doctor, I am certain that he would say that MCAS and food allergies, med sensitivities, etc, are significantly higher in the ME/CFS population. But as far as why, I am not certain. For me, I believe that extreme mold exposure was the final trigger and my immune system could not fight it any more and became hyper reactive to everything but this of course will not apply to others.
     
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  18. Barry53

    Barry53 Senior Member

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    Sorry to hear of your trials and tribulations @Gingergrrl. It was just I get the impression (only that) from people I know, and what I read here, that there may be a correlation. Thanks.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    Thanks, Barry, and I am certain that there is a correlation as well. I am not sure how much it has been studied or what statistics exist on it, but it is definitely there!
     
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  20. Misfit Toy

    Misfit Toy Senior Member

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    @Gingergrrl -I honestly don't feel that my diagnoses is ME either. I am not sure, but I just don't believe so. I feel it's been autoimmune all along. I have a B cell defect. It sounds like your doctor is fantastic. Is this the one at Stanford? Are you out and about much more now?

    I may have some variation of CFS, but not compared to others. I had EBV first but became hyperthyroid and it's just been so many AI diseases at this point that CFS is like this obscure thing for me, but who knows.

    I am still so glad you can take IVIG. The Vitamin Shoppe is in my back yard. I will definitely get it. I am allergic to Citrus also. But...you are not anymore! YES.

    For me, my straw that broke the camels back was having my thyroid out. One surgery after another. One in 2015 that was excruciating (the wrist) and then the thyroid removal put me over the edge. My legs itch, they are so dry. Eczema after years of never having eczema...all of this stuff just came on. What a nightmare. My wrist still is so painful and I am supposed to have another surgery, but can't. There is no way.
     
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