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Desensitizing food allergies, oral immunotherapy?

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by Thinktank, Mar 16, 2018.

  1. Thinktank

    Thinktank Senior Member

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    I've been on longterm antibiotic for supposed lyme disease for many years, it only made me worse, and one of the very unfortunate symptoms is that i now am allergic to most foods. everytime i do a skin prick test the list becomes larger!
    The antibiotics messed up my gut and immune system even further, making me react to nearly everything.

    One very annoying allergy is that to rice. I desperately want to be able to eat rice, has anyone on here ever succesfully used food allergy desensitization therapy? (oral immunotherapy?)
     
    panckage likes this.
  2. Gingergrrl

    Gingergrrl Senior Member

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    @Thinktank Have you been tested for MCAS (mast cell activation syndrome)? Even if not possible to test, have you tried taking H1 & H2 blockers plus a mast cell stabilizer? I plan to turn the PM feature back on within the next few days and happy to chat further or help if I can.

    If you are reaching the point of being allergic to almost all foods, this sounds more mast cell related to me than true IgE allergies. What types of reactions are you having? I actually see my MCAS doctor this morning (leaving in about 30 min for my appt) and he literally brought me back from the brink of death in 2015 (not exaggerating) so do not lose hope.

    And to your original question, I never did any kind of allergy desensitization therapy and it was not recommended in my case (but I think it has helped others).
     
  3. Thinktank

    Thinktank Senior Member

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    I suspect i do have a degree of MCAS. I react positively to H1 antagonists and ketotifen, but also to quercetin and boswellia. Cromolyn increased my symptoms like nothing else. H2 antagonists somehow increase my allergic reactions (less stomach acid = more undigested proteins passing a leaky gut?)

    I once had tryptase tested but the result was normal, although i think the sample was not stored properly.
    I've been wanting to see a MCAS specialist in Europe but funds are kinda low at the moment. I'm going to push my GP to send me to an allergist soon, hopefully one with some knowledge of MCAS.

    My reactions to food really differ. Sometimes it's the classic stuffy nose, reddened/itchy eyes. Other times it's more of a bodywide inflammatory response with lots of pain in joints and muscles, excessive urination and ofcourse a decline in cognitive function. My POTS then gets really really bad with bad vasodilation. I sometimes need to keep my arms raised above my head because the vasodilation hurts so much.

    I've been following your progress and i'm really happy for your improvement! You are such an inspiration to many.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    It sounds like MCAS from your description of symptoms, food reactions, and the meds that help you. I also did not do well with Cromolyn/Gastrochrom in 2015. Not only did it not help me, but it made me worse. Switching from Cromolyn to Ketotefin was like finding the miracle medication (even though it was only the very first step in the process for me). Also, I did not do well with Zantac and other H2 blockers until I found Pepcid and I now take a very low dose of Pepcid as an H2 blocker and find it helpful.

    My Tryptase level has always been normal, even when my blood histamine was 4x the normal limit. I doubt the average allergist would know about MCAS (and they would not in the US). I was curious from your signature, did it turn out that you never actually had Lyme disease? I know you had a neurotoxic reaction to a Fluoroquinolone antibiotic (like I did) and that we've talked about this before (and I think you might have had toxic mold exposure, too?) but for some reason, I thought you did have Lyme, too (which I don't).

    Have you tried a strict low histamine diet to see if it makes any difference? I don't do this any more but I followed the SIGHI diet religiously (from Switzerland) for 1.5 years. My MCAS doctor said that once I chose a low histamine diet, to stick with that particular one and it was too confusing with testing foods to switch between diets. I found that one to be the best match for me. I was also curious if you tried Daosin (which might have different names in different countries) prior to eating and if this makes any difference? I don't take it any more but took it for several years.

    That is so interesting and when my POTS is really bad, raising my arms above my head is one of the absolute worst things that I can do. I still avoid lifting my arms above my head as much as possible b/c it can trigger an episode. The other thing I avoid is bending down to pick something up from the floor from a standing position (which can also trigger a POTS episode).

    Thank you and it's been a long process to figure out what was going on in my case (and a lot of it is still unclear)!
     

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