Talking Allergies

My son's allergist thinks sesame is "probably your easist allergy to avoid" but it *isn't. It is the *hardest* for us and I bet for many with sesame allergy. The allergist thinks that dairy and eggs should be the hardest but there are dairy and egg-free substitutions we can use. It isn't that big of a deal to be dairy and egg-free. And with all the awareness of peanut allergies and 'no nuts allowed' signs in child-friendly places peanut and treenut allergies aren't so hard compared to sesame which has very low awareness and can be a hidden ingredient in foods (can be labeled as "spice" or "natural flavor.") Even harder for us is that our son reacts to sesame X contam and many companies in the USA do not consider sesame an allergen and don't clean for it the way they do peanut, etc. It is very hard to even get information about sesame as many companies do not track it and some, including the giant Hain Celestial which is very dominant in the natural foods market in the USA have said, "if you have sesame allergy do not use our products." And they refuse to give any info about shared equipment and are very allergy-unfriendly.

This has made it a requirement that I call *every* company before giving our son any food. He has reacted to at least 13 different products when I didn't call and just went by the label because these products had X contam, even though according to what some companies told me the products should have been X contam-free.

It is frustrating when I deal with other people who have food allergies who think I'm "overboard" and "controlling" but they don't have contact-sensitive kids or deal with sesame allergies.

Thanks for listening. Just wanted to get that out there. Might complain again later. lol

I hear ya!

When I first developed my allergies I was having a very hard time figuring out what was causing reactions. I couldn't stay off antihistamines for 24 hours,, so testing was out of the question - plus the doctor wanted me to tell him what to test for.

For a while I thought I was allergic to wheat - but, I could eat some wheat products so - that was wrong. Eventually, with my husbands help, I pinned it down to peanuts and sesame seeds. I was still having some reactions though. This was because at that time, companies were not putting warnings for sesame seeds, and I was having serious reactions to them.

When I spoke to the allergist he told me I was *nuts*. Nobody can be allergic to sesame seeds because they're hypo-allergenic. And anyway, how serious a reaction could you have ---- look how small they are. I asked him who eats just one sesame seed???? And anyway, how big a trace amount? His reply to that was *those peanut parents are taking that issue overboard*.

Needless to say - I never went back to him.

*******

Now, here's some good news for you. Ten years ago, Canadian companies didn't put warnings for sesame seeds - but now many of them do. The Canadian Food Inspection Agency didn't list sesame seeds in the top allergens - but now they do.

Canada seems to have been leading the US in labeling and allergy awareness, so, I believe it's just a matter of time before the US treats sesame seed as a major allergen. I know how hard it is to wait, but I do believe there's a light at the end of this tunnel.

I hope you are right! I really did feel upset when I realized that the new labeling law got passed without sesame given that sesame is such a potent allergen.

I am sorry you had such a dumkoff of an allergist. I hope you have a good one now. I also post on kidswithfoodallergies.org and many there tell stories of getting the wrong info from their allergists as well. It seems that a significant % of even allergists say and do things that go against what FAAN and other organizations recommend. Weird, hu?

It is amazing you figured out what you were allergic to without help. I wonder how many others have that same thing--think it is wheat but find they can eat wheat sometimes. You must be quite sensitive. I hope you are able to totally avoid p and sesame from now on!

Hi Lakeswimr! It's so nice to hear from you, and very interesting to hear your prospective in dealing with this allergen in the U.S. About a year ago, I contacted FAAN and asked if labeling for sesame would be added to the U.S. requirement sometime in the near future, and the woman I spoke with at the time indicated that this would not be happening. I really have to wonder why not? I've read about many individuals dealing with sesame allergy living in the U.S. (including the woman's son on allergicchild.com). Which organization in the U.S. could be contacted to begin lobbying for the inclusion of sesame in labels in the U.S.?

I agree with you, it is a very challenging allergen to avoid. Our son's allergy to sesame is rated as a 4+++ with skin testing (can't get any higher!) We have lots of challenges in dealing with this (and other allergens), but sesame has proven to be the most challenging. But ever since we've been making our own bread, pizza dough, buns, croutons, bread crumbs, he has not had a single reaction to sesame! Our breadmaker runs almost everyday - it has been a godsend in our household! There are about 3 crackers he can eat - not sure if you have these in the U.S.: Stoned Wheat Thins, Christie's Sociables, and Triscuits. Those are pretty much the only crackers we eat. (he's allergic to many seeds/oils and nuts, so we're pretty limited) We don't eat out in restaurants in Canada either - it is way to complicated when dealing with multiple food allergies(peanuts, tree nuts, sesame, egg, fish, sunflower, mustard, etc), and way too risky. We've had our fair share of big scares, and we can't take those kind of chances anymore.

Anyway, it's really great to have you join the forum and to hear what you have to say. I hope the U.S. will bring about the requirement to include sesame in the labeling of products. Where can you start? I wonder if the woman on allergicchild.com may have some insight?

Yes, I am extremely sensitive to sesame. I think because I kept eating it for years after developing the allergy. Now, I react when my husband eats it. He sweats, and I absorb the sweat through my pores. I hate to imagine how severe a reaction I would have with closer contact.

I was suspecting sesame seeds for a while - but after talking to the doctor, I became unsure again. And also - I was reacting even when I didn't eat it. Then I ate a sesame snack. A very scary trip to the ER - and that doctor felt it was the sesame seeds.

I have a fabulous GP who was the first to believe that I could be allergic to sesame seeds and the first to believe that I could react to what my husband ate. And, as long as nothing new develops he is quite content to treat me, and prescribe the epi-pen for me.

Wow - strange that people would not understand how challenging a sesame seed allergy would be. From the moment I heard about sesame seed allergy I just "did the math" with regards to baked and processed foods and figured it would be one of the hardest of the top allergens to deal with. We are not dealing with it in our family, but I can certainly use my imagination and realize how difficult it would be. Especially with the US law not including it as a priority allergen.

I'm assuming people without FAs think that that those with a sesame seed allergy just have to "not eat" sesame seeds (which of course is far too simplistic). (And they do the same with dairy and egg.) I think it's because non-FA folks hardly ever read labels that they don't realize what is in the foods they eat, or what their foods "may contain"....

K.

_________________
Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

Find current information on the US Food Allergen Labeling and Consumer Protection Act of 2004 here:

USFDA Information about Food Allergens
http://www.cfsan.fda.gov/~dms/wh-alrgy.html

Questions and Answers Regarding Food Allergens, including the Food Allergen Labeling and Consumer Protection Act (FALCPA )of 2004
http://www.cfsan.fda.gov/~dms/alrguid4.html

You are right that sesame is not included in the list under FALCPA in the US.

For information on sesame seed in Canada visit:

http://www.hc-sc.gc.ca/fn-an/securit/allerg/fs-if/index_e.html or

http://www.inspection.gc.ca/english/fssa/labeti/allerg/sese.shtml

A resource for those wanting to understand how Canada determined the list of priority allergens.

Common Allergenic Foods and Their Labelling in Canada - A Review
http://www.inspection.gc.ca/english/fssa/labeti/inform/allergen.pdf

_________________
Lance Hill
Regional Food Liaison Officer
Health Canada

I have to say I would take the peanut allergy over the sesame anyday.
Alhough I would get rid of all allergies if I could the reality in my life is that the peanut and tree nut avoidance is a lot of cookies, chocolate that we can live without and the sesame is basic foodstuffs. All the good crackers out there - MAY CONTAIN - 99 % of the bread and baked products - MAY CONTAIN. Restaurants - MAY CONTAIN.
That diagnosis hit me hard.

As for doctors saying that sesame seeds are hypoallergenic... My mom has been told for years she could not be reacting to the base in some presciption creams she uses. HA. New doctor picked it up immediately.

Life is so frustrating - thank goodness for people who understand!

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Self- allergies to penicillan, sulpha, environmental
DS- 10, allergic to peanuts, tree nuts, sesame and chick peas (who'd a thought?)
DSecondS - 8, none!