Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Letter To Mfrs


Lillyth

Recommended Posts

Lillyth Explorer

After I read the email I compsed to Sojo Foods to my sister, she suggested I create a template for everyone to use as needed, kinda like a fill in the blank thing.

As much as I would love to think I would actually complete that, honestly, I just never will. (I will really, really mean to though)...

Instead, what I am doing is posting the email I sent to them, and you all can copy, paste, and ammend as needed. (At least it will give you a base from which to start - I know first-hand how difficult and discouraging it can be to type up one of these leters while you are in the aftermath of a glutening -- hey, we should make a celiac horror movie, and call it "The Glutening" :lol: )...

Anyway, here's the letter:

Hello,

My name is Lillyth Keogh, and I am writing in reference to your Fish & Chips with Malt Vinegar and Sea Salt.

I have celiac disease, which means that I am allergic to gluten in any form. Your Fish & Chips claim they are gluten-fee. Please know that this is not the case. I ate the product last night, and after consuming two pieces of fish, promptly got sick. The culprit is the Malt vinegar. From Wikipedia: "Malt vinegar is made by malting barley, causing the starch in the grain to turn to maltose. An ale is then brewed from the maltose and allowed to turn into vinegar, which is then aged." Barley contains gluten.

I realize you may not know this information, so I am sharing it with you. As a person with celiac, I was excited at seeing the words "gluten-free" on the package, and, though I know that malt vinegar is not gluten-free, chose to trust your claim that it is gluten-free. I do know that the tests for gluten allow a certain amount of gluten to be present and still be considered "gluten free".

I want you to know that no matter what your tests say, your product does contain gluten. I know because I got sick from it. I know within ten minutes of consuming a product whether or not it contains gluten, and, sure enough, ten minutes into my consumption of your product, I got sick.

Please do one of two things:

1) Make the Fish & Chips without the malt vinegar and make certain that you purchase new equipment on which to make the new fish & chips so that the new gluten-free variety does not get cross contaminated by the malt vinegar that is on the equipment you now use to manufacture it.

2) Take the words "gluten-free" off the box. The words "wheat-free" may stay. There are lots of people who merely have a wheat, rather than gluten allergy who can still consume this product (which was very yummy by the way, and for someone who can tolerate barley gluten but not wheat gluten, your Fish & Chips would be a welcome treat, as most if not all Fish & Chips are battered with wheat).

And, finally, please contact all the stores who sell this product for you and ask them to do one of two things:

1) Send back (recall) all the boxes that contain the words "gluten-free"

2) Put a notice by them on the shelf that they are NOT gluten free.

I know you do not want your customers to get sick, as I did last night.

Please remedy this situation immediately, as I do not want anyone else to get sick - there is probably someone out there right now with celiac who is purchasing your product and I do not want any more celiacs to suffer from the devastating effects of gluten-consumption. Please keep me informed as to what steps you are taking. I look forward to sampling a truly gluten-free product from your company.

Thank you,

Lillyth Keogh


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Helen1984
    Newest Member
    Helen1984
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.