People with Alpha-gal Syndrome Describe Their Reactions to Carrageenan
What Do We Know about Carrageenan and AGS?
What Have We Observed about Carrageenan and AGS?
- Many of us with AGS, some people estimate up to 50%, react to carrageenan.
- For some of us, our reactions to carrageenan are worse than our reactions to dairy products.
- Often, our reactions to carrageenan come on more quickly than with meat.
- We don’t just react to carrageenan in foods; we also react to carrageenan in toothpaste.
What Don’t We Know about Carrageenan and AGS?
- Why we react to carrageenan
- Why carrageenan behaves differently in our bodies than in a test tube
What Are Our Speculations about Carrageenan?
We suspect that the explanation may be:
1. Carrageenan in the foods we eat may be composed of a complex mixture of molecules in various states of degradation, containing different forms of carrageenan and its derivatives, in some of which the alpha-gal epitope is more accessible to alpha-gal IgE than others and/or
2. Our bodies are not test tubes, but rather living chemistry labs in which the foods we eat are broken down through digestion into more elemental components.
One member of the AGS community discussed the molecular structure of carrageenan with a biochemist who suggested that its highly unstable, branching, basket-like structure is consistent with these hypotheses.
Until the mechanism by which we react to carrageenan is elucidated, all we have is anecdotal evidence that we react to it at all, just as previously, we only had anecdotal evidence that we reacted to mammalian meat. Read the following testimonials, which were gathered over a couple of days, in only one AGS support group, and which represent only a handful of the written accounts of our reactions to carrageenan in that group. Then decide for yourself: is the anecdotal evidence compelling or not?
If you are a medical researcher, maybe you can construct a double-blind test. Most likely, some of us would volunteer to participate.
I experience flu like symptoms including fatigue, nausea, abdominal inflammation and hot flashes.
In my case, consuming carrageenan causes a sudden and severe drop in blood pressure. I lose consciousness and recently was hospitalized for two days waiting for my blood pressure to stabilize again.
I have to read EVERY label to make sure it does NOT have carrageen in it. Even my safe foods are not always safe so if I am unfamiliar with a brand I have to read the label. My reaction has varied from coughing after I have ingested to full body hives. Each time I also have a migraine that lasts for at least 2 days. First name with an initial.
Carageenan did me dirty in a vegan cheese! Didn’t think to look for it on vegan cheese. Stomach issues all next day.
I tested myself to see how I would react to carrageenan. I ate a few spoonfuls of vegan ice cream, that contained carrageenan, over a period of about 4 days. I thought I was going to be fine, but the last day it hit me hard. I had the most intense migraine, stomach pain, diarrhea, nausea, and the absolute worst full body pain ever. I could not walk up my stairs–I had to crawl up slowly. I needed to stay in bed and could barely move. I was so weak and in so much pain. This lasted for 3 entire days. I’ve avoided carrageenan since.
I couldn’t figure out why my GI problems weren’t going away after going off mammal products. Then I found my toothpaste had carageenan in it. Just a couple days after switching toothpaste most of my GI problems cleared up.
Yes. Horrible! My gastro doc couldn’t figure out why I was continually ill with horrific stomach pains every single day. Sometimes vomiting.
I took it upon myself, at my own cost due to insurance denial, and went to a nutritionist. In three visits she pinpointed the Carrageenan because I used My favorite French Vanilla creamer every morning! Best $$$ ever spent! When I informed my gastro doc about it, he had absolutely no idea what I was talking about and never heard of it.
I suggested he better do some research cause if it happened to me then maybe others are affected too.
I react the same way I do to mammal and dairy. First, a runny nose, headache, and lips tingle, then 2 hours later, a full gastric mess! It takes 1-3 days before I feel better.
I got the same diarrhea the morning after I had nondairy ice cream with carageenan as I did eating mammal meat or dairy.
Carrageenan causes a more immediate reaction than typical for me. It causes abdominal bloating and GI issues lasting at least 2 days. I become very fatigued, my body becomes flushed, I get hives, and get foggy in the mind. It’s one of the worst reactions I’ve had and it’s in vegan sour cream and ice cream!
Yes. Non dairy creamer. Thought it was dairy but it was carrageenan. Dizzy, lips tingling, confusion
I react to carrageenan. Lose my voice, nose gets runny, throat and mouth gets numb.
I react to carrageenan the same as I do colonoscopy prep…
When choosing ice cream, I have to be careful that it doesn’t contain carrageenan. Hours after eating it, my lips swell up, and it can take up to two days to go away.
I have the same exact reaction as I do to eating actual mammal meats! First is pop rock feeling on my tongue then rumbling in stomach, then gastric issues then gastric pains. And waste stinks!!!
Yes! Terrible GI issues. Pretty much immediate. Bloating, stomach pain and in the rest room a lot! Last about 24 hrs.
Anxiety first then itching, runny nose, and the weirdest cold chills that only run up and down the right side of my body. I only have the cold chills with carrageenan.
Carageenan makes my mouth feel like it is burnt and no amount of benadryl will help it.
I knew I was allergic to carrageenen before I knew I had alpha gal. My allergist didn’t even know what carrageenen was, until I was diagnosed and showed her what it was and how it’s related to Alpha Gal.
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