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 Post subject: Introducing myself
PostPosted: Fri Apr 13, 2007 8:29 pm 
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Joined: Fri Apr 13, 2007 4:36 pm
Posts: 12
Location: Georgia, US
I just wanted to introduce myself here on the sesame board. My son had a severe allergic reaction to a small taste of tahini when he was about 9 months old (vomiting, hives, and facial swelling within several minutes). Subsequent allergy testing shows that he's probably allergic to a variety of other foods (eggs, dairy, sunflower, peanuts and soy).

I've learned a lot in the last couple of months. I've struggled with pediatricians, allergists and confusing literature. I'm still learning. I'm glad to have found this forum--I've already learned so much here already!

I'm wondering about other people's sesame allergies. How many of you also have sunflower (or other seed) allergies? (My son has vomited from eating products with cold pressed sunflower oil before.) Does a single ingested sesame seed affect most people? What about sesame oils? Is expeller pressed usually okay, or just highly refined? (We did a skin prick test with highly refined sesame oil at the allergists and that was fine.)

Thanks so much! I'm so happy to have found you all.

_________________
Baby boy with allergies to sesame, egg, dairy, legumes (soy, peanut, peas so far), sunflower. The jury is still out on citrus.


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 Post subject:
PostPosted: Sat Apr 14, 2007 11:08 am 
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Joined: Thu Mar 03, 2005 9:38 pm
Posts: 1643
Location: Toronto
Welcome to the board. :) I'll answer what I can. However, I don't really know about *most people* -- just myself.

I react only to peanuts and sesame seeds. For me, sesame seeds is the worse allergy, it's harder to avoid, and my reactions to it are much worse.

I don't need an entire sesame seed to have a reaction. I have had serious reactions from eating a piece of bread that ran on the same line as bread that had sesame seeds. I think I have also reacted to sesame oils. Prior to figuring out what was causing my reactions, I ate in a chinese restaurant. I later called and found out that they cooked my meal in sesame oil. Nothin I ordered had actual seeds in/on it -- so it must have been the oil I reacted to.

_________________
self: allergy to sesame seeds and peanuts
3 sons each with at least one of the following allergies: peniciilin, sulfa-based antibiotic, latex, insect bites/stings


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 Post subject:
PostPosted: Sat Apr 14, 2007 4:50 pm 
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Joined: Fri Apr 13, 2007 4:36 pm
Posts: 12
Location: Georgia, US
Thanks AnnaMarie! I do fear that sesame is going to be harder than any of my son's other allergies...especially here in the states where they don't label for sesame :x . Do you know when you developed your allergy? Can I ask what type of reaction you get? I'm so scared of him coming in contact with sesame/sunflower again, as his reaction was so severe. I have basically no hope that he'll outgrow this one (neither does his allergist).

_________________
Baby boy with allergies to sesame, egg, dairy, legumes (soy, peanut, peas so far), sunflower. The jury is still out on citrus.


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 Post subject:
PostPosted: Sun Apr 15, 2007 10:40 am 
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Joined: Thu Mar 03, 2005 9:38 pm
Posts: 1643
Location: Toronto
My alleries started when I was around 30-ish. I was having a very hard time figuring out what was wrong and continued eating both peanuts and sesame seeds for quite a while.

At first, I would get giant hives. Sometimes, I couldn't bend my knee because the hives would join together and it would just look like my leg was swollen. A few times I was covered head-to-foot in hives, with my eyes and ears swollen shut. I never knew your ears could swell shut.

I was told by an allergist that sesame seeds were *hypo-allergenic* and I could not be allergic to them. I believed him. :roll: I ate this little thing called a sesame snack. It's kind of like peanut brittle, but full of sesame seeds. That put me in anaphylactic shock. I stopped eating obvious sesame seeds, but never thought about all the places that have cross-contamination. I was still having daily reactions. When I asked the allergist for help in figuring out where I was getting all these trace amounts into my system, he told me that *all those peanut moms were blowing it out of proportion* and there was no real risk. Our conversation went down-hill from there and I've never gone back to him.

The first positive thing I did was bought a bread-machine. Then, I gave up eating crackers for over ten years. I tried making them, but I never succeeded. If you really want safe crackers, I would suggest calling companies and asking specifically if any of their crackers are made in a plant that does not use sesame seeds. They might be able to tell you some safe ones. However, if they don't put *may contain* warnings on the label, call regularly to make sure they haven't moved things from one plant to another.

Last summer I finally found a safe brand of hot-dog bun. Then, they moved it into a different plant, and it now has a warning on it. :( I can make a decent hamburger bun, but my hotdog buns are horrible. :oops:

_________________
self: allergy to sesame seeds and peanuts
3 sons each with at least one of the following allergies: peniciilin, sulfa-based antibiotic, latex, insect bites/stings


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 Post subject:
PostPosted: Sun Apr 15, 2007 11:38 am 
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Joined: Fri Apr 13, 2007 4:36 pm
Posts: 12
Location: Georgia, US
Wow. What a story--both scary and hopeful. Good work controlling your reactions! How often do you react now that you've eliminated products that might have X contam? I sure do with they labeled for sesame here...maybe we'll move to Canada!

It's amazing how off base allergists can be sometimes. I had brought my son to an allergist three days before his ER visit for sesame seeds and she had said "I really don't think we're dealing with food allergies here...his rash is contact derm, not eczema". She said this despite the fact that he skin tested strongly positive to milk, casein, egg whites and mildly to peas, rice, wheat, soy, peanuts, corn, etc....

Since I'm still breastfeeding, I cut out dairy, eggs and sesame from my diet and lo and behold his eczema (or contact derm, in the allergists opinion) almost entirely cleared up. If it hadn't been for his severe sesame reaction I probably would've believed the allergist and wasted a lot of time changing detergents and fabrics and carpeting and such.

Luckily my husband has been making bread in a bread machine for as long as I've known him. It's not quite as good as the fancy bakery breads, but at least we are used to making our own. Of course, I am absolutely scared out of my mind to try my son on new foods, so I haven't yet introduced him to bread :? . I'm scared of all the "new" ingredients that he'd be exposed to all at once (wheat, yeast, oil). I guess I should get on one of the parenting forums and see how other moms get past this fear?! My poor guy loves food, but I have him on a very restricted diet.

P.S. I might have to get your hamburger bun recipe :wink: I too have tried crackers with limited success (my son ate them, but I thought they were pretty gross).

_________________
Baby boy with allergies to sesame, egg, dairy, legumes (soy, peanut, peas so far), sunflower. The jury is still out on citrus.


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 Post subject:
PostPosted: Sun Apr 15, 2007 9:50 pm 
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Joined: Mon Apr 11, 2005 9:38 pm
Posts: 924
Location: Oakville, Ontario
Hi Juliag and welcome! It's great that you've found this forum - it has been a tremendous help to so many families - including our own. I'm sure you are feeling very overwhelmed, but it does get better and easier as you learn more about how to manage your son's allergies.

Our 5 year old son shares some of the same allergies as your baby son. Skin testing was conducted by an allergist when our son was 12 months old and confirmed he was allergic to eggs, green peas, sesame, sunflower and salmon. We were told to avoid all of his allergens plus peanuts, tree nuts, all fish and all legumes. He is tested annually for his allergens, and some additional allergens the allergist wanted to test for, or allergens we were concerned about. We now know that he is allergic to other seeds in addition to sesame and sunflower including mustard seed (we already strongly suspected mustard) & poppy seed (he's never eaten poppy seed). In the legume family, he is able to eat green beans and soy, but is allergic to peanuts and green peas. We have been told to avoid all other legumes. We have been instructed to avoid all forms of the seed or nut allergens and the oils. The allergist said that some highly refined oils may not contain the allergen, but recommended we avoid all forms.

We have found some crackers our son can eat, and I would recommend you call the companies. Try a very simple type of cracker first - maybe the type of cracker you would use in soup. But always call the company first! Don't worry about having too much variety. In the beginning, we found a few things we could safely eat in our house, and stuck to those. Over time, we have found lots more products we can safely eat, but it's pretty overwhelming in the beginning, so just try to find a few. We also make all of our own bread, buns, baked goods, etc.

When our son was 1 year old, he would react with facial hives when he would eat citrus fruits, grapes, or tomato sauces. He can now eat these foods! ... however, we avoided these foods when he was younger. The allergist felt these foods were causing irritation to his face (because young children can be very messy eaters and the foods will be in contact with their face). Our son never reacts to these foods now. The allergist was concerned about berries, so we avoided all berries until he was about 3 years old. The allergist suggested if we wanted to try to introduce a single berry, to do so using a cooked form of the berry, and only a very small amount. Our son never reacted to berries, and can eat all forms of berries.

I look forward to hearing more from you in the chat! I'm sure you will find lots of help here. Take care.

Julie

_________________
15 yr old daughter: no health issues
12 yr old son: allergic to peanuts, tree nuts, eggs, fish, sesame, sunflower, mustard, poppy seeds, green peas, some fruits, instructed to avoid all other legumes (except soy & green beans), pollen, cats, horses


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 Post subject:
PostPosted: Mon Apr 16, 2007 10:07 am 
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Joined: Thu Mar 03, 2005 9:38 pm
Posts: 1643
Location: Toronto
It sounds like your biggest hurdle right now is getting over the fear. It's totally understandable that you have it -- but it needs to be at a livable level. :)

There's actually an article in the recent Allergic Living magazine about fear of food. One of the concerns is that if a child's diet is limited beyond what his allergies require there is a risk to his health. Finding where that line is, probably isn't easy though.

Does your son eat cereal? How was he with the crackers you made? Both of those items probably had wheat in them. Read the labels of foods he has been eating to see what oils are in them, and to see if he has been eating anything with yeast in it. If you look closely at what he has been eating, maybe you can add to it, without adding a lot of individual ingredients. (If that makes sense. :? )

You asked how often I now react -- probably about once or twice a year. They tend to be just hives now -- and in one localized area, not all over my body. My most recent reaction was in January, and it was just my lower back.

My hamburger bun recipe actually has an egg in it. But I'll see if I have any receipes without egg.

_________________
self: allergy to sesame seeds and peanuts
3 sons each with at least one of the following allergies: peniciilin, sulfa-based antibiotic, latex, insect bites/stings


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 Post subject: Thanks!
PostPosted: Wed Apr 18, 2007 10:20 am 
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Joined: Fri Apr 13, 2007 4:36 pm
Posts: 12
Location: Georgia, US
Thanks Julie and AnnaMarie for the replies. It's so interesting for me to hear from other sesame allergic people (it doesn't seem to be very common here in the US yet).

My son was RAST tested and skin prick tested for the top eight allergens, as well as for a few other things. He is most strongly allergic to eggs and sesame, and bad to dairy, casein, soy and peanuts. They said that based on the two tests we can try wheat and corn, but I've been reluctant to give him these (I'm so scared of another reaction).

I think I'll have them do more extensive testing on legumes next time we visit the allergist (they let us bring in fresh foods for skin tests). I tested him on green peas recently (gave him a whole bunch at once, as per the allergists suggestion) and he threw up five minutes later. On the other hand, he seems to tolerate green beans. I would love to give him black beans/pinto beans, chick peas, and/or lentils for the protein, but I'm more nervous now that I've heard some of the horror stories! Ack.

Julie: I definitely want to hold off on mustard and poppy seeds for now...but I know that mustard can appear as "natural spices" in a lot of foods. Do these trace amounts affect your son? Citric acid has given my guy a red face on more than one occasion, so I'm also waiting on the acidic foods. Interesting to hear how similar your son's allergies are to my guy's.

I do hope that he stands a chance to out grow some of these since he's not even a year old yet...and I hope that I have the courage to expand his diet accordingly as he ages. I "grew into" my own allergies and this whole fear-of-food-thing is new to me!

_________________
Baby boy with allergies to sesame, egg, dairy, legumes (soy, peanut, peas so far), sunflower. The jury is still out on citrus.


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 Post subject:
PostPosted: Wed Apr 18, 2007 12:33 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
Quote:
I tested him on green peas recently (gave him a whole bunch at once, as per the allergists suggestion) and he threw up five minutes later.


Wow - I would take the opposite approach, in particular with a child who is obviously already allergic to things. I would start with a very small amount - not even in the mouth, but on the skin - then go from there.

I will send you a PM tonight with some details about how to introduce foods to an allergic child. It might help you avoid a bad reaction in the future.

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


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 Post subject:
PostPosted: Wed Apr 18, 2007 11:31 pm 
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Joined: Fri Apr 13, 2007 4:36 pm
Posts: 12
Location: Georgia, US
Karen--this was the allergists protocol when she claimed that we probably weren't really dealing with food allergies. She said that I should challenge him (heavily) with the foods that had just small reactions on the skin prick tests. I tested green peas only because I had been giving him those previously anyway, so I was pretty sure that there wouldn't be a severe reaction. She said to do a lot at one sitting so that you would know for sure on those borderline foods. Obviously I approach things differently now that I know more and now that I have seen a severe reaction! I think I have see-sawed too far in the other direction now though and hardly dare to try anything :? Thanks for all your encouragement.

_________________
Baby boy with allergies to sesame, egg, dairy, legumes (soy, peanut, peas so far), sunflower. The jury is still out on citrus.


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 Post subject:
PostPosted: Thu Apr 19, 2007 6:09 pm 
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Joined: Mon Apr 11, 2005 9:38 pm
Posts: 924
Location: Oakville, Ontario
Juliag, Yes, we have to avoid all forms of mustard. Everytime I see the word "spices" in the ingredient list, I cringe and usually put the item back on the shelf - I usually just can't be bothered phoning everytime I'm searching for a new food item. But, when I'm really determined and want a particular product, I will write down the bar code and phone number of the company and call them when I get home. I find with mustard (or other items that do not appear as priority allergens, this information is not readily available, and sometimes I will hear back with an answer in 2 days, or as long as 3 weeks.

Your son may not have an allergy to mustard! Many people with sesame (and sunflower allergy) do not suffer from this allergy, so it's best to talk to your allergist.

_________________
15 yr old daughter: no health issues
12 yr old son: allergic to peanuts, tree nuts, eggs, fish, sesame, sunflower, mustard, poppy seeds, green peas, some fruits, instructed to avoid all other legumes (except soy & green beans), pollen, cats, horses


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 Post subject:
PostPosted: Thu Apr 19, 2007 11:25 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
Hi Juliag -

I didn't mean to imply that you were the one who made the call to feed your son a lot of a new food at once. Hope you didn't take it that way.

I'm quite surprised that the allergist would suggest that kind of approach, though!

I just sent you a PM about the protocol on how to introduce foods (sorry - meant to do it last night). If you don't get it let me know. Sometimes PMs stay stuck in my Outbox for days and even weeks, and I don't know why... (and neither does the webmaster).

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


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 Post subject: More thank yous.
PostPosted: Fri Apr 20, 2007 10:15 am 
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Joined: Fri Apr 13, 2007 4:36 pm
Posts: 12
Location: Georgia, US
Thanks Julie and Karen for the advice. I'm slowly learning to tread the line between careful and paranoid. I'm probably a little more lax than I should be at this point--partly because it's hard to get my husband "on board" with all the changes that we need to make in our day-to-day life. Karen, I will send you my e-mail later...I appreciate all the information I can get. We don't meet with the allergist again until mid-June, but I want to collect a good list of questions for her, so that I really make use of the visit :D (I hate it when I leave there and feel like I don't know anything more than when I started, you know?)

_________________
Baby boy with allergies to sesame, egg, dairy, legumes (soy, peanut, peas so far), sunflower. The jury is still out on citrus.


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 Post subject:
PostPosted: Fri Apr 20, 2007 8:23 pm 
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Joined: Sat Apr 01, 2006 11:21 pm
Posts: 78
Location: Connecticut, USA
My son is allergic to dairy, eggs, peanuts, tree nuts and sesame. Sesame is the most difficult to avoid for us because we are also in the States. But not to worry for too long. Eventually it *will* be covered by the existing labeling law and there are many companies that do label for it (although you have to call and ask and sunflower is usually *not* labled for.) With any non-top 8 allergens it is a very good idea to call companies to get info about those particular allergens and chances of cross contamination. And current USA labeling laws don't cover cross-contamination so I'm glad I 'have' to call due to sesame. I get very good info.

Regarding how much sesame is required for a reaction, very little. DS reacted to one drop of a soy sauce that was cross-contaminated with sesame oil with lip swelling and eye swelling. If he had had more than a drop I'm sure it would have been a very bad reaction. This was soy sauce that *tasted* like soy sauce but had been made on the same equipment as something with sesame and the equipment wasn't cleaned because the company didn't consider sesame an allergen. (This is why I started calling every company before using any products.)

My son also had reactions to tiny amounts of products that were made on shared equipment with sesame-containing products.

Sesame is potent, like peanut. It takes 1000 times less peanut to cause a reaction than most other allergens and sesame and other seeds are supposed to be equally potent.

I can give you more info later. I have a list of products we use that I will PM you later but you should check on things yourself as your allergens are different from ours and ingredients and manufacturing procedures can change any time.

Glad to have you here. :)

By the way, there is another board you might like that is a USA message board, therefore the discussion there is a bit more based on things in the USA than here.

www.kidswithfoodallergies.org

Costs $25 a year but to me it is well worth it.


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 Post subject:
PostPosted: Fri Apr 20, 2007 9:24 pm 
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Joined: Thu Mar 03, 2005 9:38 pm
Posts: 1643
Location: Toronto
I agree that it is a very good site. Helpful and friendly, and more American.

When they first started charging an annual fee they said people would be able to read without joining, just not post. I think you can go and check it out at least without paying.

_________________
self: allergy to sesame seeds and peanuts
3 sons each with at least one of the following allergies: peniciilin, sulfa-based antibiotic, latex, insect bites/stings


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