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Worsening MCAS and low histamine diet

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Strawberry, Jun 22, 2016.

  1. Strawberry

    Strawberry Senior Member

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    Has anyone started a low histamine diet, only to have their MCAS worsen? I read about that happening with Yasmina Ykelenstam, and I seem to remember @Gingergrrl got worse after finding out about her MCAS?

    I have partially reduced histamine foods, but have not gone low histamine due to the fear of getting worse. As it is, my chemical sensitivities have started to get worse again. VOCs are bothering me far more than they have in years, and I am finding myself choking on car exhaust fumes more frequently than I used to. I also had a minor reaction to Swedish Fish, assuming it was the food coloring. I really want to try low histamine and see if I improve, but I can't help but wonder if it is more damaging in the short term?

    Really would like to hear experiences both way. Negative and positive.

    Thank you in advance!
     
  2. Gingergrrl

    Gingergrrl Senior Member

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    @Strawberry I got worse before I got better but it was not b/c of the low histamine diet. It was initially b/c I was undiagnosed and the anaphylaxis to the yellow food dye (Tartrazine) was completely out of the blue and even after I identified it was the Tartrazine, I did not know I had MCAS. Then I reacted to a red food dye in a medication and then the following month, started reacting to foods. We figured it out and I started on the most well known mast cell stabilizer, Gastrochrom, but it did not work for me at all (but once I started on Ketotefin, it was a game changer.)

    I have to be honest that the recipes from Yasmina (the low histamine chef) are often super high histamine and the vast majority of them are not foods that I can tolerate. I do not doubt she has MCAS if she says she does but the foods in her recipes would not be safe for people like me.

    For me, the combination of the SIGHI diet and my meds/supplements are what led to my vast improvements. I also had to get several meds compounded to avoid food dyes and got a print out from my pharmacy of all of the inactive ingredients in each of my meds and looked up all meds on Daily Med website to find the brands with ingredients that I could tolerate.

    Although it is possible that my MCAS is not permanent and life-long, for now I view it as if it is, and I take my set of meds 30-60 min prior to eating food and I follow the low histamine (SIGHI) diet. I am now able to eat in several restaurants (after not eating in one for over a year) as long as I am certain the food is fresh or frozen to avoid histamine build-up, it is cooked in a separate pan without spices (vs. on a grill where other foods have been cooked), and there are no food dyes (such as many restaurants use butter with Tartrazine yellow dye, etc.)

    So I have to ask the waiter/waitress a million questions prior to placing my order but so far, every single one has gone out of their way to accommodate me. As soon as I say severe allergies/anaphylaxis they understand and I don't need to say MCAS or go into detail. We have 3-4 restaurants that we now know are "safe" and they know my order LOL. There are certain types of foods/restaurants that I cannot eat and probably never will but that is okay b/c I am thrilled to be able to eat in any restaurants.

    I try new foods every week but have still avoided the top offenders like food dyes, spinach, yeast, red tomatoes, citrus, fermented or pickled foods, spices like black pepper, all fish, all pre-prepared meats, canned items, etc, and probably always will.

    Hope this helps!
     
    Valentijn likes this.
  3. Timaca

    Timaca Senior Member

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    I don't have MCAS, but I do seem to have a histamine intolerance, but not as severe as Gingergrrl's. It seems I also have significant other intolerances (certain foods and it seems even chlorine--as in swimming pools and hot tubs).

    About 3 1/2 years ago I started an elimination diet and 3 weeks into I felt remarkably better. But I didn't know, at that time, what foods were problematic. I am still figuring that out. For example, wheat is a problem, even though it is low histamine. Corn also seems to be a problem....I will retest it again later this summer. Ditto for blueberries.

    I can eat very fresh fish (it can't have any smell to it). I stay away from all other animal meat as it is too high in histamine for me and also worsens my lipid panel.

    I do believe diet (as in food intolerance issues) is a key player for me, but wasn't the first issue with my health. I think the chronic infections I'm battling set off my weird food intolerances. I am MUCH better if I avoid the foods that are problematic for me. (Basically I eat vegan, avoiding the top 10 food allergens, and high histamine and high benzoate foods--as in berries and stone fruits--although will be testing those this summer again....)

    Like Gingergrrl, when I go to a restaurant, I order my food plain. It never comes plain. (rarely anyway). But I usually don't have too much trouble with the seasonings they use.....often just a headache will occur.

    If you want more info on my health journey and diet you can check out my blog. You can scroll down and read what happened to me in 2015. I'm about to write what I learned the first half of 2016....

    Best,
     
  4. Strawberry

    Strawberry Senior Member

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    Well, it just happened again.

    A month ago when my daughter returned from school, she bought a box of strawberries (too expensive in Hawaii). I ate some then, and had no issues. She picked strawberries from our yard last night and gave me 3 to bring to work. I just had a small reaction to them! My throat is very cruddy and my chest is tight. No breathing issues though.
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    Strawberries are high histamine... Hmmm... Maybe you should change your screen name to blueberry LOL.
     
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  6. Strawberry

    Strawberry Senior Member

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    LOL!
     
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  7. Strawberry

    Strawberry Senior Member

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    I think I may have figured out my own answer. Being on 2 Zyrtec, 2 Zantac, and 4 Neuroprotek, could it be that my allergies are better and am now noticing symptoms that I never noticed before? Like the very cruddy throat after strawberries, I used to always have a cruddy throat so would I have noticed if it worsened after eating strawberries?

    BTW @Gingergrrl my personal air filter arrived today, and its just now charged. Expect an update soon! In the proper thread....

    Also, reviewing the thread again @Timaca I meant to say that I had been on your website earlier that day that you posted, and had no idea it was you until I clicked your link! Some very good info on that site, thank you!
     
    Timaca likes this.
  8. Gingergrrl

    Gingergrrl Senior Member

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    Awesome and am looking forward to reading all about it! Sorry do not know the answer to your first question. I do not tolerate strawberries and haven't attempted to eat them in a very long time.

    I don't take Zantac (tried at all doses low to high for all of last summer but it did nothing for me). I do take Zyrtec and NP every day along with Ketotefin, Daosin and Quercetin. I think it's just a matter of finding what works for you, we are all so different.
     
  9. Strawberry

    Strawberry Senior Member

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    I had told Dr K that I had very minimal stomach issues now (I healed my stomach many years ago) but he said the H1 and H2 in combination together worked better with MCAS. My local Dr that admits he knows NOTHING of MCAS also said that H1 and H2 are more effective when taken together. But I am glad to hear that you are able to get by with not taking Zantac. Years ago, I went through every prescription pill on the market until insurance quit paying, then moved on to the next. I couldn't sleep laying down or I would start to throw up. My stomach was overproducing acid because of the pills. It was so out of control I decided the pills were doing more harm than good, so I weaned myself off them with tons of probiotics and baking soda and various other things I can no longer remember. I dread being on stomach pills again... You give me hope that some day Dr K will let me quit Zantac when we find what works.

    Now off to find the other thread for a brief post.
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    I think it depends what symptoms you have and for me the H2 blockade almost seemed to allow the H1 symptoms to worsen. I was up to 150 mg of Zantac 2x/day plus Gastrchrom but it wasn't doing anything. I also got respiratory depression and a toxic reaction from Benadryl. But all three of those meds are lifesavers for many on my MCAS boards.

    My MCAS doc stopped all of what wasn't working (those three plus two others!) and put Ketotefin in its place and that's all I needed (plus continued with Zyrtec and supplements like I mentioned). In general my MCAS issues are not GI related. But please listen to your docs and do what works best for you.
     
  11. Strawberry

    Strawberry Senior Member

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    As mine also aren't (or at least GI is minimal). Minus wheat, which is a blood tested allergy. I definitely don't do any changes until Dr K says to do it. I'm not brave enough to try numerous things as many here do!

    I am SO glad your new meds are working better, hope you have good luck in your new apartment too.
     

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