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Need help re: world-wide shortage of the product/ingredient Daosin

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Gingergrrl, Mar 13, 2017.

  1. Gingergrrl

    Gingergrrl Senior Member

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    After many phone calls today, I have learned that there is a world-wide shortage of the ingredient, Diamine Oxidase or "Daosin". In the past I found alternate brands like "Histamine Block" but suddenly all of the prices got jacked up and then the products disappeared (from Amazon, Swanson, Seeking Health, etc).

    Today I made some calls and learned there is a world-wide shortage of this ingredient. I no longer take the bucket-load of MCAS meds that I did in 2015 b/c I don't need them. But I had continued to take Daosin (in some form) along w/my 4 main meds b/c I did not want to mess with something that was working so well. I stopped it about a week ago (b/c the product unavailable) and noticed some return of symptoms. Nothing to the dangerous/anaphylaxis level, and sometimes nothing at all, but I definitely feel better when taking some form of Daosin prior to eating food.

    The only company that seems to have this product is:

    http://umbrelluxdao.com/

    I was wondering if any other MCAS peeps have heard of this brand or purchased it before? Am very curious how there is a world-wide shortage but one company can still get the ingredient? This makes me hesitant to buy it. I am okay without it but would continue taking it if given the chance.

    Thanks in advance to anyone who knows anything about this!
     
    justy and Old Bones like this.
  2. Oberon

    Oberon Senior Member

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    I do not know anything about the company but they do mention a partnership between themselves and Sciotec; Sciotec being the owners of the DAO Patent.

    Sciotec was apparently purchased last year. I wouldn't be surprised if their new strategy for DAO is to develop key distribution partners and charging a much larger premium. This is most likely a very artificial shortage to pursue their new strategy. They are looking for a return after spending millions on purchasing Sciotic.

    They may eventually open it up to more distribution partners but for now it seems like umbrelluxdao is the only source in the United States at a much more expensive price point. At the very least the product itself seems quite legitimate.

    I would try contacting Sciotec directly to see if they'll discuss their strategy in more detail.
     
    ScottTriGuy, Plum, Old Bones and 2 others like this.
  3. Gingergrrl

    Gingergrrl Senior Member

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    @lakesarecool Thank you so much for your detailed reply, you ROCK :star::star::star:. I was trying to figure out the link between Sciotec and this new company Umbrelluxdao, and the website also mentioned "Diem Labs", but couldn't figure out who they were in the whole mix.

    I did not realize that Siotec held the patent on Dao (and thought that Swanson held it with their former product "Daosin" but I was obviously wrong)! My MCAS doctor did not know either. I had no idea this was an artificial shortage b/c I called two companies today (not Sciotec) and both told me that there was a worldwide shortage of this ingedient but neither knew why or when it might become available again (and they sounded sincere).

    So if Umbrelluxdao is the only source of Daosin in the U.S., BUT the product itself is safe and legitimate, then I will most likely go ahead and buy it. It never occurred to me that this was a Pharma scheme to jack up prices! I actually believed that the ingredient was unavailable but I thought it was odd b/c it comes from piggies (and my Armour Thyroid also comes from piggies but is still available with no issues).

    Thank you so much for that info!
     
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  4. Oberon

    Oberon Senior Member

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    No problem :). Just remember my post is a lot of speculation for the business side. The only things certain are:

    Histame the original DAO supplement in North America was a partnership between Sciotec and Naturally Vitamins: http://histame.com/press/53-histame-available-in-united-states

    Sciotec owns the trademark for DAOsin and is presumably the exclusive producer. Any supplement with DAOSin listed including Histame, and Swanson is either produced by or licensed from Sciotec (otherwise they would be sued for trademark violation at the very least.) http://www.sciotec.at/en/products/functional-food/daosin/

    Strata purchased Sciotec back in 2015: https://www.stada.com/media-public-...-with-addition-of-food-intolerances-area.html

    As long as it's a Sciotec product you should be good to go.

    Anything related to the business side is purely speculation on my end. One other strategy they may be pursuing is more of a Metagenics and Douglas Laboratories style where they focus on selling through Health Care Practitioners which may be more profitable for the new owner, Strata, depending on their business model.

    This is actually a more likely scenario than what I stated before based on the quotation listed on Umbrellux DAO's website, " As of 2017, this product is the only food-grade Diamine Oxidase (DAO) enzyme currently licensed to be sold in the United States outside of practioner’s offices. Other products that used to carry the DAO ingredient have either been removed from the market or are only available directly from a licensed practitioner ."
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    I know it is speculation but I think you are spot-on and solved this for me.

    I am now certain you are right. I initially bought Daosin from Swanson (or on Amazon) and then it became unavailable so I switched to "Histamine Block" by "Seeking Health" which only a few weeks ago became unavailable so I switched to HistamAid by "88 Health Products" and now they are ALL unavailable and I was told there was a world-wide shortage of the ingredient. I should not be naive w/Pharma nonsense after working in a hospital for 12 years and everything I have been through as a patient but I believed it to be true.

    This solidifies it for me that one company now has a monopoly in the US (umbrelluxdao) unless you buy from a practitioner (which is usually even more expensive and I do not see a naturopath or anyone like that at present so not an option). It definitely appears to be the Sciotec product so it should be okay (safety wise).

    It's just annoying that they jacked up the price on the EpiPen and one company holds a monopoly and this is becoming more and more common, even with supplements now. Thank God I have never had to use my EpiPen, and am dramatically better, but I feel safer having all of the products on hand that I need b/c I have no idea how long this remission from MCAS will last. I want it to be permanent but I know it may not be.
     
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  6. kangaSue

    kangaSue Senior Member

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    @Gingergrrl Just went through my list of DAO supplements, everything is coming up as unavailable.This started almost 2 years ago, that's a long time to withhold the product from the market if its just about jacking up the price.

    The only option I can think of is Xymogen's website says their histDAO product is available through their approved practitioners, maybe give that a shot.
    (https://www.xymogen.com/formulas/products/75)
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    @kangaSue I was able to buy DAO supplements until a couple of weeks ago (except for the original Daosin product from Swanson which became unavailable about a year ago here). I'm wondering if it is different in each country?
     
  8. kangaSue

    kangaSue Senior Member

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    Ah o.k., Can't say I've looked lately but I remember looking it up for someone a while back and found it was coming up as unavailable on many international sites then too.
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    I always bought it on the US Amazon site but the brands kept becoming unavailable until this week when all had disappeared! So am really not sure about other sites or timeframes.
     
  10. adelheid55

    adelheid55 Senior Member

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    In Germany it's available in (online)pharmacies. We have bought it just yesterday without problems.
    I know it will be to expensive to have it sent to the USA.
    Hopefully it will be available in future...
     
    Gingergrrl likes this.
  11. justy

    justy Donate Advocate Demonstrate

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    I just bought some with no problems from Farmaline in Belgium. I don't know if they deliver internationally, but I always get mine from them.
     
    Gingergrrl likes this.
  12. keenly

    keenly Senior Member

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    I like this product, but is has sugar added and nasty ingredients. I hope this will be changed in near future.
     
    Gingergrrl likes this.
  13. Old Bones

    Old Bones Senior Member

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    Many thanks, @Gingergrrl , for the timeliness of this thread, and to @lakesarecool for your added insight.

    Just yesterday morning, I intended to place another order with Seeking Health, and was dismayed to find the product unavailable from them, or from any of the other suppliers I was aware of. It's unlikely I would have found umbrellux on my own.

    I placed my order this morning -- the exchange rate is a killer. Does anyone know why orders sent to Canada are limited to three bottles?
     
    Gingergrrl likes this.
  14. Gingergrrl

    Gingergrrl Senior Member

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    I received the e-mail (below) from the last company where I bought Daosin but then it became unavailable in the United States. They sent me this e-mail and am posting it verbatim except that I removed my name and the sender's name. They are the ones who told me about "Umbrellux DAO" which appears to be legit and I am going to order it shortly. Am going to reply to the other posts in a separate message next.

    Here is the e-mail:

     
  15. Gingergrrl

    Gingergrrl Senior Member

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    @adelheid55 and @justy That is very interesting that you can still buy this product in Germany and Belgium which makes it clear that there is not a worldwide shortage of the ingredient (diamine oxidase or DAOsin) as I was told by "Seeking Health". I believe that the woman I spoke w/on phone was being honest w/me and did not know the details herself. But it appears to be a manufactured shortage of the product to jack up prices for the U.S. (and anyone who orders it from U.S. websites).

    I agree that some of the fillers are not good (the original DAOsin from Swanson did not have as many bad fillers as these other versions). I wish that was not the case as well.

    Am glad I posted it (and debated if it would be helpful for anyone else) and am glad it was! And thank you again @lakesarecool for all of that great info.

    Yes this is what happened to me a few weeks ago when I was going to buy the Seeking Health version (but through Amazon). I also would never have found that umbrellux version on my own without the e-mail that I posted above.

    I can only imagine the exchange rate to Canada must be extra high and I have no idea why they are limiting it to three bottles. I have not bought the product yet but am planning to soon. Am curious @Old Bones once yours arrives and you try it, to hear how it compares to the other versions for you.
     
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  16. Oberon

    Oberon Senior Member

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    Customs Regulations. Canadian customs limits you to a 3 month supply of any supplement being imported.

    "A Canadian who chooses to obtain a health product from outside Canada which may or may not have been reviewed and market authorized by Health Canada is allowed to import:

    A single course of treatment or a 90-day supply based on the directions for use, whichever is less, of a health product as long as the product does not contain a substance listed in Schedule F of the Food and Drug Regulations."

    Source: 5.2.2 http://www.hc-sc.gc.ca/dhp-mps/compli-conform/import-export/pol-0060_biu-uif-eng.php

    You can try contacting them to see if they are able to send more. They might be able to by saying a serving size is 3 capsules per day, but that's really up to them.

    If you have a naturopath or functional medicine doctor they may be able to source it through a local doctor only nutraceutical company to save you the shipping charge.
     
    Old Bones likes this.
  17. yeswehave8

    yeswehave8

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    I have been lurking a LOT lately, due to new issues and symptoms (I will start another post about all that) but I stumbled across Umbrellux DAO myself while searching down a DAO supplement. I just got mine today, it came from Ann Arbor, MI, so they must carry it across the border there somewhere and send it domestically. I did pay an exchange rate on the CC payment, though. It is all very odd.

    Now, I just need to work up the nerve to try it... I am so afraid of another reaction (2 anaphylaxis in 2 months) that I am now even afraid of the pills that are supposed to help me.
     
    Gingergrrl likes this.
  18. Gingergrrl

    Gingergrrl Senior Member

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    @yeswehave8 What else do you take for the anaphylaxis? DAO would help with specific food reactions but not other things. Do you take a mast cell stabilizer or H1 blocker?
     
  19. yeswehave8

    yeswehave8

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    Currently, I am on Zyrtec/ Xyzal (which ever one I have available) which is an H1 blocker, Zantac twice a day which is an H2 blocker, Singulair (leuktriene inhibitor) and generic Prevacid (a PPI). For a reaction, I also add in Benadryl and Prednisone and another Zantac.... assuming it doesn't reach the level of EPI worthy. My doctor has prescribed Gastrocrom, but it is very expensive and the insurance does not want to cover it. I bought some out-of-pocket with a coupon, so I have tried it. It kind of upset my stomach, so I have not yet decided whether I want to continue taking it yet. If the insurance will not eventually agree to cover, it is pointless anyway, I can afford $500/ mo for the script WITH the coupon.

    Part of my issue is I don't have an official diagnosis yet other than "allergies" and feel like I am even spoon feeding the docs as to the testing I might need to show something. At least with the diagnosis, I have a better basis to appeal to the insurance to cover the Gastrocrom!

    **I used to "only" be on Zyrtec and Singulair. The rest has been added in more recently due to my recent repeated ANA reactions.
     
  20. Gingergrrl

    Gingergrrl Senior Member

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    @yeswehave8 Can you try Ketotefin instead of Gastrochrom (as mast cell stabilizer) and Atarax (as rescue med)? This is the med combo that literally saved me in 2015 and wondering if it could be of help to you (to ask your doctor about).
     

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