Allergy Foodie is so excited to have its first reader contribution – thank you Ali! I wrote an article about flax seed allergy a few months back and since then Ali has helped me answer the many questions other readers have had about this uncommon allergy. But for her I would have never known that microwaveable neck /back/foot wraps may contain flax seeds and cause a reaction in those people who are severely allergic to flax seed. Her input has been so invaluable that I requested her to write a guest post about flax seed allergy. What follows is her personal journey – the symptoms, the many missteps towards isolating the food that caused her allergic reaction, online resources and much more.
April of 2004 was my first encounter with (what would take nearly a year to discover) a severe food allergy. Back then, I actually thought that it was food poisoning and didn’t give it much credence.
At the time, I was in excellent shape, working at a women’s fitness center and trying to eat healthier. I would suffer from hideous menstrual cramps but didn’t like to take anti-inflammatories because they would wreak havoc on my stomach. Someone had told me that flax seed oil was a natural anti-inflammatory, and also had other health benefits, so I decided to try it. The problems to come weren’t immediately noticeable because I didn’t take the capsules all the time. However, I did observe that I would get nauseous for some unknown reason and but wrote it off as being related to having my periods. Then all of a sudden I started to get really sick after eating certain foods. I would get extremely nauseous and have violent pain in my stomach like a knife stabbing my gut and twisting. I was never able to throw up and had to take many trips to the emergency room, but each time, they said they couldn’t find anything wrong with me. When they asked me to describe the pain, I kept telling them that it felt as though I was being poisoned. I went to a gastroenterologist to have an endoscopy, among other tests, but again, he found nothing wrong. He then sent me to another GI specialist. The specialist said it looked as if I had idiopathic gastroparesis (http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/), a serious stomach disorder. After seeing another specialist in Philadelphia, and then a surgeon, they suggested that I have a stomach pacer put in. At this point in time, I weighed only 104 lbs and looked anorexic because I had become fearful of eating anything that might make me sick and would send me to the ER. Thankfully, I had subscribed to a support group on line and after reading the stories from the other members; I insisted that this was not the disorder that I had, so I refused to let them perform the surgery.
When I got violently sick one day after having lunch at work which resulted in having to go to the ER yet again, I called the restaurant from which our lunch had come from. I knew that the salad could not have been the source of the problem, and, at this point, I already had my suspicions about flax seed. However, every doctor I would bring up the flax seed issue with would just wave me off and say they didn’t think that could be the cause. I don’t think any of them believed that something that is normally so good for you could be causing all of this pain. When the restaurant returned my phone call, and confirmed my suspicions about what was in the roll that their employee had originally told me was whole wheat, I knew I had found the source of my problems. The roll, as it turned out, was whole grain, and it did indeed contain flax seed. I went back in my head and thought of everything that had ever made me sick, and, one by one, the answer s led back to the same component - “flax seed”. My trips to the ER were caused by: a granola sample in Costco that stopped me in my tracks, when, within seconds of eating it, I got that strange metallic taste in my mouth; a peanut butter and jelly sandwich that I had made on 7 grain bread, instead of my usual white bread; the finger sandwiches at mom’s birthday party made of whole grain bread; the whole grain pretzels, the flat bread sandwich and so on…
When I finally went to an allergist, she confirmed it, and I was more than happy to go to my other doctors and tell them “I told you so!”. As a result, now, I have to read everything before I eat it, and if there are no listed ingredients available, I don’t eat it. There is a lot more to this story besides the pain and the year it took to discover my real problem. There was the medication I was given for a stomach disorder I didn’t have that caused me to spiral into a major depression (a “RARE” side effect), the loss of money from having to drop out of massage therapy school because of the depression. The anti-depressants that didn’t work because I was still taking the medicines that were causing the depression. Researching my medicines and finding the answer to my depression to be the medication I was given for the disorder I didn’t have. This was something that both my doctor and my pharmacist should have easily figured out if they actually knew what the side effects of the first medication was. I went through hell.
One of the biggest problems I had was that when I would look up flax seed on the Internet, all I could find were the benefits of taking it. Then one day, I finally had the clarity to look up flax seed allergy and found this under the heading of “Safety” in this article by the Mayo Clinic: http://www.mayoclinic.com/health/flaxseed/NS_patient-flaxseed Nausea, vomiting, and abdominal pain are reported in two individuals shortly after taking flaxseed products by mouth; these reactions may have been caused by allergy.
So, I hope by sharing this, someone will look up the words “flax seed allergy” and see this story, saving them months, or even years of unnecessary pain, misdiagnosis’, or, God forbid, something worse resulting from a misdiagnosis. I can offer this suggestion to you: If you feel like you may have an allergy to something that is uncommon, don’t wait, go to an allergist. If something unknown is making you sick, start a food diary and know everything that is in what you are eating so you have proof that there is that one common factor. And, if a doctor makes a suggestion or diagnosis that you are not certain about, get a second, third, fourth opinion until you are sure, and comfortable that what they are telling you is true. If I had not been so inquisitive and not done my own research, who knows what may have happened, or how much longer it may have taken to discover what was wrong. I wish you all the best of health.
Pingback: About Hives??? | How to Treat Hives
Wow! Ali, thanks for sharing your story. I am certain that there are a lot of undiagnosed allergies out there. This is the first I have heard of flax seed allergy.
i also have a severe allergy to flax seed and would like to have all the info i can gather so i stop ingesting it by mistake…its a rather hidden ingredient.
Thanks Elyse for visiting my blog
Flax seed has indeed bacome omnipresent – people (me included) add it to pretty much anything to enhance nutritional content. Wish you the very best.
I really don’t want to use my epi-pen so try very hard not to ingest flax by accident. I read ingredients carefully — especially on crackers, cereals, and breads. There are also flax chips out now. In restaurants I ask the server what is in the bread. And if I’m not sure about it but want to try it, I take a tiny bite and chew very slowly. My throat will start to tingle before I swallow and I can spit it out before anything major happens.
I hope this has helped people realize that not everything that is claimed to be “good for you”, actually is. And I hope this helps those people out there who may have this very real allergy be able to take the information to their doctor’s, who, sadly, may not believe they have this rare allergy. Thanks Anu for allowing me to share and also for having this invaluable web site.
Wondering if you have any alternative to flax seeds or flax seed meal – thanks!
I’ve also got the allergy to flax and I’ve learned to be VERY cautious when buying food or eating out. Anything that says “multi-grain” or “Omega-3″ is something that I scrutinize carefully.
Hi Daryl,
Thanks for visiting AllergyFoodie and sharing your story. You brought up 2 very important points:
1) Omega 3 should be a red signal for people with flax seed allergy. It has often been touted as the best vegetarian source of Omega 3 fatty acids.
2) Always carry Benadryl and Epipen. Mistakes are common with labeling, in restaurants and even in home-cooked meals. ‘Forearmed’ is the only way to stay safe.
Best wishes,
Anu
Bunny,
I’m not ceratincertain of the substitution that you’re looking for, but you can try grinding up walnuts since they are rich in Omega -3 and perhaps adding that to oatmeal in the morning.
Daryl, good idea! I know it can sometimes be a pain to have to dissect everything, but you get used to it. And, it’s better to be safe than sorry.
Your posting here may have saved myself from the same misery. I started taking Flax seed powder to help pre-menopause symptoms. It seems I have developed this same allergy and today was excruciating, very similar pain to what you described. I didn’t think about the flax seed until this morning after I immediately had pain after taking it. But I am also having severe diarrhea and then dehydration. I am going to go to the doctor today but will print your posting. I will let you know how it goes!
Comecei a consumir linhaça marron acreditando nos milagrosos benefícios desta semente, mas precisei interromper porque tinha diarréias e cólicas todos os dias. Após algum tempo, tentei a linhaça dourada que dizem ser mais suave, estava tomando uma colher de sopa em meio copo de água pela manhã. Comecei a ter dores horríveis (horríveis mesmo) no estômago, náuseas e vômitos. Estou fazendo exames, mas até agora todos estão normais (endoscopia do estômago, ultrassom do abdômen…). Já estava começando a acreditar que tenho sérias restrições ao consumo de linhaça e pelo que li neste artigo, é este mesmo o meu problema. Foi muito bom encontrar este texto, porque realmente toda a pesquisa sobre linhaça fala sobre seus benefícios “milagrosos”, inclusive o de reduzir as alergias e efeitos das intolerâncias a outros alimentos. Intolerância ou alergia à linhaça é uma REALIDADE!
Although it took me many months to figure out, I, too, have an allergy to flaxseed. In my case, about 20 to 30 minutes after ingesting, I get a pounding headache which is quickly followed by stomach pain, nausea, and vomitting. After vomitting, I feel completely better. It amazes me that even a tiny amount (less than 2% flaxseed in multigrain bread) causes this reaction. I am very cautious when buying anything labelled “multigrain” and scour the ingredient list to make sure it does not include flaxseed. I have never tried flaxseed oil for fear of a similar reaction.
I have been aware of my allergy to flaxseed since 2005 when I ate one of my husband’s Cliff Bars and became sick with diarrhea, vomitting, and stomach cramping. I had never had food allergies or GI problems before this, and I knew it was from the Cliff Bar. I read the ingredients on the package and remember seeing flaxseed listed. I didn’t think anything about it until a few months later when I ate a multi-grain bagel and became so sick that I had to leave work. All the symptoms from the first time, plus headache, and a racing heart rate. Since then I have been very careful, but even Quaker oatmeal packets that I have eaten for years are now “New and improved” with flax-seed added…multi-grain was easy to stay away from, but butter with flaxseed added to it will be more and more difficult to monitor. My doctor thought I was crazy for thinking it was an allergy to flaxseed, but I know what I eat! My last episode happened last Sunday after a whole year of being careful and not having a reaction. The restaurant claims that they do not use flaxseed, but I truly believe that they must have used butter or another cooking ingredient which contained flaxseed, because I know the feeling now. It comes upon me very quickly and is the same feeling every time. I believe that more and more people will find that they have this allergy/intolerance as time goes on, they just haven’t narrowed it down to the particular source yet.
Thanks for sharing your story, Ali. It’s amazing how similar your story is to my experience – symptoms, visits to ER, medical tests etc. I recently discovered my allergy to flax seed recently by being carefully aware of what I eat as you suggest.
I went to the ER twice before I figured out flax was the one thing I had done in common that day. My blood pressure went to almost stroke level both times.I was given a prescription for a very high blood pressure med and told I would have to take it forever. Thankfully I figured it out first before I became dependent on them. I cannot even smell large quantities of flax without my BP going through the roof. I have to carry Benydrl or else drink a lot of water which helps, also apple cider vinegar mixed with water helps get rid of the symptoms . I hate flax.
I too am VERY allergic to Flax seed and it took me 3 encounters over almost 2 years to pin it down. My first reaction was to a bare naked granola item (Banana Walnut flavored). My second was to a homemade pasta I made and third and final was a flax seed cracker. Each time the reaction was worse. Incredibly itchy throat and mouth, followed by wretching stomach pain/cold sweats and MULTIPLE trips to the bathroom. I too, never threw up though. I didn’t feel better for almost 48 hours the third time. I thought it might have been flax after the cracker episod, but I couldn’t figure out the homemade pasta dish I made. Then one day I was in the grocery store looking at pasta’s and I saw the (now dreaded) words High Omega 3′s on a Barilla pasta PLUS. That is when I put it all together. I went to the allergist and got tested. Sure enough, they confirmed it. Be VERY carefull because lately there are even more items with Flax Seed in them because of the benifits of Omega 3′s. I have seen them in regular cereals suddenly and even chicken nuggets! Anytime I see “high Omega 3′s” on the cover of the package that is a que for me to stay far, far away. I carry an epi pen now too and have to ask about pasta’s, rolls etc. I have a feeling more and more people will come forward with this allergy now that we are seeing it in more items. Good luck to anyone else dealing with this and my recommendation..KEEP the packages and keep a diary of your reactions and what you ate to try to determine what your allergy is.
So glad I came across this article/comments. I had an allergic reaction to a Naked drink a couple of years ago and I blamed it on red algae because I figured it was the 1 thing I hadn’t had before, but now I wonder if it had flaxseed in it. I take the supplements all the time but would get sick if I had pasta,bread with whole grain/flaxseed in it. I felt like my family thought I was crazy because I was always getting sick from the food. thank you so much for your input! Its nice to know I’m not alone.
I discovered my flax allergy quite a few years ago. Tonight I accidentally ingested flax in a “Whole Wheat Blend” pasta, which contained flax. My throat burned, then my stomach felt stabbed as the food hit. For the first time, my heart-rate accelarated as well. Thank you, Benadryl.
I’ve suddenly developed a red, itchy rash on my face and the only thing I can think of that I’ve changed in the addition of flax to my diet… But no stomach pain or anything like the nightmare others have gone through. Do I need to look for another cause? Thanks so much!
Thank goodness I came across this article! I thought I was going crazy! I have taken Flaxseed supplements for years for there health benefits. But I also started to get sick from certain foods and couldn’t figure out why. I had stomach pains, nausea. I too had narrow it down to flaxseed, whole grain. Which most whole grain items has flaxseed. I just had an endoscopy and I did tell my gastrointestinal doc about my suspicions but do not have the test results back yet. Do I need to see an allergist? Thank you for the article its nice to know I haven’t completely lost it.
the omega 3 issue is interesting I have gotten sick from salmon before could this be from the omega 3 in it?
Thank you, thank you, THANK YOU for posting this. (FYI, I actually searched “flax seed intolerance” and got here.) I have irritable bowel syndrome that is triggered by very specific things. One of those things seems to be flax seed, but I haven’t been able to get anyone to even agree that it’s possible. Internet searches, before this one, have likewise turned up nothing at all except benefits. I was beginning to think I was insane…
I avoided flax seed for several years but after recently being advised to go gluten-free, I bought a gluten-free cereal with flax-seed, reasoning that maybe it wasn’t the flax-seed that was bothering me, but actually gluten. Within twenty minutes of eating it, I was doubled over with stomach pain, nausea and abdominal cramps, just like before. I’m pretty certain it’s the flax seed at this point. Your post really helps me feel like I’m not insane.
I do wonder if there are other sources of omega-3s that might be safer…I took fish oil for a while, but I honestly can’t recall if my IBS was worse then or not. I hate the thought of trying it to find out and suffering through the effects if it doesn’t go well…I’d love to try chia as well but am similarly reluctant to risk the ill effects…
One day, I decide to give my daughter a healthy treat because she is intolerant to wheat, eggs, peanuts… (She also has dermatitis) So I gave her some ground flax… bad idea. Within a few minutes of ingesting, she started getting red around the mouth and her neck…
Luckily, it did not seem to go past those symptoms… But since then, I’ve added it to my list of things to avoid.
FYI…I’m filing a report today to the FDA safety program regarding the danger of additives like flaxseed being added to butterand other cooking ingredients. With flaxseed being added to this type of food, it will be increasingly difficult to monitor when eating out at restaurants, and homes of family and friends.
If anyone is interested, go to the Department of Health and Human Services.
You will find the FDA Safety Information and Adverse Event Reporting Program, a “MedWatch” questionaire only takes a few minutes to fill out and mail.
I found out that I was allergic to Flax about two years ago after eating whole grain bread and having this terrible reaction. My mouth started to itch and burn, then my throat, and the nausea and vomiting were horrible. Every time after that that I ate something with flax such as whole grain pasta, pizza, and protein shake I has a reaction worse then the last. I finally found the common thing was the flax.
One time I ate a white pita bread that was sitting on a whole grain pita at a party at work. I even got sick then! I once saw a doctor who said “well if you think that is what you are allergic to then just avoid it.” Since my last two reactions had been so severe I thought I should probably carry an epi-pen. I am now pregnant and asked my OB doctor about it. Finally I am getting a referral to an allergist. People just discount your allergy sometimes since it is so uncommon. I read labels very carefully now and have not had a reaction in 6 months.
Our last allergy doctor couldn’t find a place to order flax from to test us (since it is uncommon) so had us bring in our own — he had us bring in flaxseed oil. I didn’t react to it even though I knew I was allergic to flax. We tried again with flaxseeds mushed up in a bit of water and I did react to that.
hi
i had the same reactions to flaxseeds for over a year till i observed the pattern and concluded it was because of flaxseeds.withing minutes of taking it i get this unbearable pain in my stomach .my doctors refused to beleive it was due to flaxseeds.im glad that im not alone.
Hi,
I have a reaction to flax-seed too. The first time several years ago a friend gave me a cookie. I ate it and loved it and asked for another. A half hour later I was doubled up in pain on the floor with chest tightening and pain all throughout my abdomen, chest, and back. My husband called to see what was in the cookies and the only ingredient I hadn’t had before was flax seed. I was in pain for several hours. The same thing happened few other times times when I accidentally ate a granola bar with flax or a multi-grain roll with flax. Then last night when I drank an Isagenix Shake. I had the same reaction and checked the ingredients and sure enough it contained flax. I am also allergic to almonds and have a similar reaction with those.