Question for those dealing with sesame allergy

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Sesame seeds are frequently reported to induce anaphylactic reactions. Moreover, allergy to sesame seeds is often characterized by low or negative specific serum-IgE, thus resulting in low specificity of RAST and SPT, which may be due to poor quality allergen extracts.

From [url="http://www.food-allergens.de/symposium-3-2/sesame/seed-allergens.htm"]www.food-allergens.de/symposium-3-2/sesame/seed-allergens.htm[/url]

Now here's my question. People on this board often say people don't *get it* about pa. Some also complain that if another parent at the school allows their pa child to eat *may contains* it makes them (the person here) look paranoid/overreactive and makes it appear to others that pa is not serious.

Yet, many parents here allow their child with a sesame allergy to eat *may contains*. Do some people not realize just how dangerous it is? I don't understand. There are more people with pa - I understand that. It is near impossible to expect a place like a school to limit/ban sesame seeds - I understand that. But, how can you allow your child with a sesame seed allergy to eat at BK or McD?

I'm not judging - I just really don't understand.

Both are allergens that [b]commonly[/b] cause anaphylaxis - so why do [b]you[/b] treat them differently?

On May 9, 2006

Because until we see evidence to the contrary, we intend to treat the low positive RAST for sesame as a false positive. Not saying that is the "correct" way to do things, but it is what we need to do.

Our daughter's health considerations aren't the only serious ones in the house, KWIM? Treating sesame like pn/tn means, for us, an entire regional cuisine [i]that we depend heavily upon for other medical reasons[/i] would be gone.

I think the bottom line for us is that seeing is believing. We don't ever treat our daughter as "allergic" solely on the basis of a RAST result. But we've seen what pn can do. And egg. Traces, I mean. We've also seen evidence that tn are a huge problem. Given that doc doesn't ever want her skin tested again for pistachio, that's good enough for me. KWIM?

But those of us who deal with MFA, well, you just learn that not everything that registers as "allergic" is a threat like that. Even DH, for example, who has MFA, has one which is a potential anaphylaxis trigger, and another which is a nuisance-- for [i]him[/i] though it triggers anaphylaxis in some who are allergic. I have two FA...the one to citrus doesn't worry me much, as I've had it all my life and it is a nuisance. No citrus unless it is thoroughly cooked. Thoroughly. The other? Suspected shellfish allergy-- that one I do not toy with.

SO allergic is allergic, but it isn't always worth driving yourself crazy over, either. Even when PA was rare, it still killed a lot more people than the much more common allergies to TN. Something special about that one. Shellfish and PA seem to be almost universal anaphylaxis triggers for anyone who is allergic-- it's as though with those there is no such thing as a "mild" allergy. Not so with the other big offenders.

SO it isn't that we're oblivious, we just choose to take it one day at a time. If we begin to see evidence that something is emerging with clinical symptoms, then we re-evaluate. (As we had to do recently with dairy. Again.)

Does this help?

[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

On May 9, 2006

Quote:

Originally posted by AnnaMarie: But, how can you allow your child with a sesame seed allergy to eat at BK or McD?

For us? thats easy.

We don't.

Whats the issue here? That someone else has a different comfort level than you?

As long as the child is alive and reaction free, anybody can do 'whatever' they want.

If a PA kiddo's parent wants to take them to chick fil a, go ahead. Not MY comfort zone, but theirs.

I think all allergies are equal - all can be deadly, depending on the person.

Heck, a 1/4 of a circle of banana sent Caitlin into an anaphylactic episode...

Any food could be deadly. But you ride the 'see saw of life' and find YOUR comfort zone.

It gets easier with time... truly.

Jason

------------------ [b]* Obsessed * [/b]

On May 9, 2006

yeah, us either.... eating at BK or McD, that is.... but that is not because of sesame. So I don't feel qualified to answer... but we don't get food for DD at any place which has a breakfast menu. (Because of eggs.) But our house isn't entirely free of all food allergens, either. Not even all of hers. With MFA, some things are just much more difficult than they are otherwise.

In other words, our comfort zone is pretty tight for things that have demonstrated severe potential [i]in our situation[/i]. Something which is a known anaphylaxis trigger for one of us gets more respect, if that makes sense. For everything else, (shrug) you gotta live, right?

On May 10, 2006

Quote:

Originally posted by jtolpin: [b] Whats the issue here? That someone else has a different comfort level than you? [/b]

Not at all. I'm quite OK that other people have different comfort zones than I do. I even sometimes enjoy discussing the differences because there might be a reason I should/could change mine. (e.g. lots of discussions with Erik, and some other people and I now trust Kraft.)

**********

No - I just sometimes get very confused about why people treat peanut so different then other allergies. I wonder if there's a reason, or is it just the publicity that pa has received over the years.

When someone new is dealing with pa people tell them to avoid all peanut, even trace amounts. Even if they have had no (or minor) reactions - total complete strict avoidance. But, when it is something other then peanut - they seem to feel differently. If the reactions are minor, don't worry to much about it.

But to me - when it is an allergy to something that [i]commonly[/i] causes ana. reactions, I feel they should be treated like peanut. (peanuts/nuts, sesame, fish, are the ones off the top of my head)

*********

Corvallis Mom, your post makes perfectly logical sense to me. I don't know if there even is a "correct" way to do things with allergies, but yours sounds correct for your situation. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] (not that I think you need my approval or anything, lol)

***********

Anyway, I'm just feeling very confused right now. It's where I am, I guess.

On May 10, 2006

Confused? Don't be. No reason to be.

An allergy is an allergy and you avoid 100% of those products that 'contain' it.

Anything else is 'gravy', kwim?

Jason

------------------ [b]* Obsessed * [/b]

On May 10, 2006

For me I treat EA and PA as equally as serious. The only difference is that I will have egg product near my son, example, if I am eating a sandwich that has mayo on it. I will NEVER have peanut products near him, probably the difference for me is the "sticky protein" factor. That being said you will never find whole eggs in my house :-)

On May 10, 2006

I treat my dd's sesame allergy VERY seriously! Her RAST numbers are 86.7- that is very high- YET most people are not nearly as familiar with sesame allergies as they are with nut allergies.

My comfort zone is very low with crackers, breads, bagels, restaurants- I think the sesame allergy makes our life much more difficult.

I am thinking about doing a spt for sesame but feel nervous doing it- she has never had a reaction to it- probably because we are so careful.

Has anyone had a problem with skin testing for sesame?

I wish FAAN would take sesame allergy more seriously and make it one of the top allergens- it really scares me!

On May 10, 2006

I can't answer this question in reln to sesame...I'm not certain that I have a sesame allergy...but I suspect that I do on account of skin test results.

But I know that I don't always take my other allergies as seriously as the peanut and nut allergy...although I would never eat 'may contains'. In part, I do think it is just that I have always had allergies..and severe allergies at that..as a kid but was particularly worried about the peanuts and treenuts because of my uncle's deadly allergy. I wasn't as concerned about egg and soy because I didn't realize that vomiting and hives in the throat was considered to be majorly serious as well...and I didn't know anyone with a deathly allergy to either of those foods.

Now even though I know that some of my other allergies could be as deadly, the peanuts and treenuts are what really scares me because so far nuts have been the only thing which have caused a full blown ana reaction. I do take some risks in relation to soy that I wouldn't for peanut---I found out for instance, that the tapioca starch I buy is packaged in the same area as soy flour containing products. That doesn't sound good. But my diet is so limited and the only other tapioca starch I can find is made in a plant that processes nuts....so I take my chances with traces of soy.

Part of it too is if I got as stressed when people were eating soy and egg-containing products around me as I do when they are eating peanuts I'd be a nervous wreck. It is slightly odd, though that I actually get more worried about egg than soy. (I'm less concerned still about all of my other allergies.)

On May 13, 2006

For me, it's a matter of scale. My sesame allergy just isn't as severe as my shellfish or DS' peanut. I'm a Class 2 for sesame. I'm a Class 2 for crab and lobster (Class 3 for shrimp). DS is Class 3 for peanut.

I've had a very severe GI reaction to crab (my first reaction) where I should have used my epi. It's difficult to tell when GI reactions turn anaphylactic.

But sesame is just not the same for me. My reaction is so much less serious. I do avoid now, but I don't have to completely avoid. I can eat store bought bread. I can eat out. I just avoid blatant sesame. But if I get a hold of some, I just take a Triaminic strip (12 mg. of diphenhydramine), and I won't react, or if I have, it stops right away. But it's not the same as crab.

With DS, he can have pecans. He's a Class 1. He doesn't eat them all the time, but he gets them every now and then--ones we shell or this one specific brand we know is safe. Yes, he's technically allergic to them. And they people can be anaphylactic to them. But he hasn't had problems.

He's a Class 2 with soy. No problems. He's about to eat some edamame hummus for lunch. We limit his soy to some extent, but he's vegetarian, and he's got to get protein. So we pick and choose.

That's it--we pick and choose. And we have and Epi. But we won't need it for soy, and I don't think I'll need it for sesame soon (I may get to that point, but I'm not there now).

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