Newly Dx-Sesame, Sunflower, Flax, Wheat, Eggs

[Shasta0708]

Hi, I am new here and recently diagnosed with severe seed allergies(Including the oils). I am finding it very difficult to find baking items since allergic to wheat and eggs also. Any wheat substitutes seem to be contaminated from seeds. Any baking suggestions would be helpful. Bobs Red Mill brands for baking are out for me. I've almost given up on anything pre made at this point. Safe snack ideas??

Thank you in advance.

[rebekahc]

Wow, that's a really tough list to deal with!  I know there are people here allergic to sesame and sunflower and other people allergic to wheat and eggs, but I don't know if there's anyone allergic to all.  Even so, hopefully we can collaborate to help you find some safe choices.

Welcome 

[Macabre]

I've never had a need to call Udi's, but do they process on the same lines?

I eat the basic Blue Siamond crackers safely. They're now added an artisan variety which scares me, and I need to call to see about it, if it's a problem, and if they share lines with the ones I eat.  But I haven't had any problems with their almond crackers--as recently as yesterday.

I don't know about flax though.

[CMdeux]

Some alternative flour ideas for you:

a) quinoa
b) teff (also a seed-- but it is SERIOUSLY unrelated to your other allergens)
c) buckwheat
d) rice
d) corn
e) garbanzo

Now, I realize that milled grains are VERY difficult to find.   But here's a trick that I learned back when my DD (now13) was allergic to wheat, nuts, eggs, milk, oats, barley, etc. etc.

Buy yourself a coffee grinder.  WASH your grains, and dry them on low heat in an oven with the door propped open, and then grind as desired for your use as flour.

This is very safe, because that grinding process is the largest cross-contamination risk in flours, we found.

[CMdeux]

There is also a baking powder (single-acting) that is completely wheat and egg free.... thinking that this is featherweight?  something like that.  Anyway, you'll want to CALL about sesame, because of the concern with sesame labeling being what it is, but it should work for the rest of that list.

Single acting baking powder is a bit challenging to work with at first-- the trick is to mix wet stuff separately, mix the baking powder with DRY ingredients, and then VERY quickly work wet-into-dry-and-into-the-oven.

[Shasta0708]

Thank you for the helpful info. I will check out the crackers-yay! and the whole idea of the coffee grinder/ and cleaning and drying the grains is sooo helpful. I would have never thought of that. I would have also never thought about checking for cross contamination on baking powder...but that's why I'm here
For a very long time, I thought I was allergic to corn and gluten but back in late summer/early fall, I kept getting more and more sick (very sick and scared) (I basically was living off sunflower seed butter and contaminated nut butters). I went to an allergist which skin tested me and I tested high reactions to 52 foods. He had no advice or help to offer, so long story short, in Dec/January, I found a wonderful G.I. doctor and a new awesome allergist and immunologist that has tested and worked with me. We still haven't talked about some foods but making headway. The seed allergies are severe and the wheat and eggs are delayed. Hopefully with time my gut will heal and I will tolerate some things better. It's been a long road but feeling so much better already.
Thank you again.

[lakeswimr]

Have you had for sure reactions to all those foods? It would be very unusual for an adult to suddenly develop all those food allergies.  What type of reactions have you had?

[Shasta0708]

Well, the diagnosis was all at once but I have had problems for a very long time. I will try to make it as brief as possible on here (Its a pretty long story).
I have always been an "allergic" person. I found out recently from my almost 80 yr old mother that when I was 2 or 3 that I had some type of stomach infection and they had to basically start over with my foods and reintroduce things one at a time. (why did I not know this before????lol-thx mom). In high school I constantly had digestive issues, rashes, not feeling well, etc ( I wonder now if it was sesame?) I was diagnosed with an ulcer "disease" when I was a senior. My parents just chalked it up to being a perfectionist, nervous-type kid. Looking back I always thought it was weird that I would get stomach bugs, etc...when no one else around me was sick. I have random illnesses, especially digestive all along. Fast Forward..we move to TN....home for allergies...blah...I'm sick alot, breaking out in huge welted together kind of hives -go to allergist they say I'm very allergic girl, pat me on the back (environmental allergies were off the chart) hand me an epi- (I had hives that day after eating a bowl of cornflakes). They give me some prednisone, give me some allegra, nasal spray. I feel better for a while but not great (I never went back). About 3 years from there I go vegetarian. Start breaking out in hives even with the allegra, I notice its after I eat, major digestive issues again. I give up wheat (its in everything right??). Some of symptoms start to improve. I have a bowl of certain brand of Organic Corn Cereal, with Silk Soy-my eye starts swelling shut, throat is getting tight, red face, hives start appearing. I think its corn, & wheat for like 7 years. Eating really very clean. Always still getting low level reactions-mention it to my GP he pretty much ignored it. Never went to see GP except to get an epi-prescription. Never pursued going to an allergist (yes, dummy self-diagnosis-we won't even go there....). Brings me up to this past summer, it was pretty good summer eating not many grains. Then enters fall...my worst time of year, and then I always want to cook/experiment close to Thanksgiving time. I increased my nutbutter and seed intake. I'm itching all the time, losing weight, feeling very ill. Finally break down and call an allergist. Thats when the 52 foods came up (and I truly felt like I was reacting to everything.) I finally went to my GP, he thinks I'm depressed...I insist that I'm not- that I just don't feel good. I was having tingling in my hands and tremors. He prescripes anti-depress. I leave don't take the anti-depress. That very our family gets a letter from him stating that he is going to be serving as a hospitalist and that he will no longer be running his private practice (honestly even though I was very angry and sick it was the best thing that ever happened) I find a new doctor (he starts looking for cancer and having all these test run -I've given soooo much blood...(he also refers me to a g.i. doctor) in the mean time, I find a new and highly recommended allergist and immunologist. I have truly never, ever, been to the doctor so much in all my life. I've had every test run that you could imagine. My endoscopy showed atrophy of my duodenum. They thought I had celiac, a very rare autoimmune disorder, crohns,h-pylori, thyroid, etc....I'm so blessed and thankful that everything has been allergy related. I feel sooooo stupid that I didn't get medical help sooner. Now I'm trying to do the "right" things, going to my doctors appts(things other people just do that I didn't).etc...I hardly ever went to the doctor when I was a kid and food allergies weren't widly known about like now. My allergist wants me to try wheat and eggs again, in a few months adding them back one at a time (they were IgG?-delayed reactions. I'm just glad to finally be making headway to feeling better and yes, on the seeds I've had major reactions and quite a few times I should have and will use the epi in the future. I've had severe drops in blood pressure, hives across the face and neck, swelling of eyes, and face. When I eat sunflower I wheeze, my face turns red, I get hoarse and my throat feels tight. I get cold, I get hot/flushed.  Blurry vision. Runny nose-Sunflower oil in chips will make my nose profusely run and I get dizzy, diarrhea, nausea, vomiting, waking during the night gasping for air (that hasn't happened for a long time), ezcema (sp?), dark circles under eyes, breakouts on face, extreme fatigue, concentration issues, you name it-its probably happened. . Not all of these at the same time but depending on my exposure. I work in a private school where some of my children bring hummus and just smelling a strong batch will make me dizzy. I'm fearful of fall that something will get worse again but right now I'm just trying to focus on finally getting to the bottom of things and feeling better. I think the sesame allergy has always been? I will never know that.
Sorry-even condensed this still turned out longer than what I had wished.    . I'm very grateful to have found this forum and the already useful information I have gathered.

[CMdeux]

Your story is more familiar than you might imagine.

This is exactly how my DH was initially diagnosed with some seven or eight food allergies as a child of about 11.  When a cheeky intern at the specialist clinic at a major US Medical school turned to his parents during a painful GI imaging procedure and said; "I don't suppose you've ever taken this kid to an ALLERGIST and talked about food allergies, have you?"

     Well, no... as it happens.  Instead, they'd been to oncologists, neurologists, pediatric gastroenterology specialists, etc. etc.

He's still soy and walnut allergic, and also allergic to something else that isn't terribly common (he pops up with hives occasionally, though, and reproducibly-- so we avoid certain things.  Campbell's soup, for example).


Here's hoping that the wheat and egg are both because your immune system is on such high alert!     That's happened to others here, too, when they've been consuming an allergen in small/variable amounts, or via cross-contamination.  Sesame seems to be a fairly common culprit there.

[Shasta0708]

I'm sorry to hear of that for you and your husband but it makes me honestly feel like crying that  someone else has a similar story, understands, and can relate. Thank you for sharing.

[lakeswimr]

Many of the symptoms you described sound certainly like IgE mediated food allergies which are potentially life threatening.  It sounds like you may not have a written emergency plan of when to use the epi pen.  it actually sounds like you may not have ever used the epi pen although from the sound of it you should have used it many times.  Any reaction that impacts breathing is an absolute epi pen, 911 call and 4+ hour stay in the hospital on all emergency plans. But even without breathing issues, there are many other indications to give the epi pen.

I recommend you read about food allergies to make sure you have up to date information.  Dr. Wood, one of the top allergists who has food allergies himself wrote, 'food allergies for dummies' which is quite good.  There are some national food allergy related organizations you might consider joining where you could get a lot of great info, too.  You can also get good info here.  the most important thing will be to have  a very good allergist who specializes in food allergies.

Do you know that labeling laws in the USA only cover the 'top 8' foods under the FDA.  Those are dairy, eggs, peanuts, tree nuts, wheat, soy, fish and shellfish. Those 8 foods must be labeled clearly if they are in foods.  Other foods like sesame, sunflower, flax do not have to be labeled and can be 'hidden'.  My child has a sesame allergy and has serious reactions to foods that didn't have sesame listed on the label or any ambiguous wording like 'spice' or 'natural flavor', etc.  I find I have to call every food company to ask about potential cross contamination.

Also, some of your symptoms sound non-IgE and I still wonder if you may be dealing with cealic.  You said you had tingling in your hands and something else and it make me wonder about nutritional defiencies frequently seen in those with Celiac.  Celiac is rare but not THAT rare--1 in 100 have it supposedly.  My friend scoped falsely negative multiple times before finally having a scope that showed she had Celiac.  You sound like you have some GI issue along with the food allergies in any case so I would want to see a top GI doctor as well.

Please see this sample written food allergy emergency action plan.  You can see that based on this plan you should have given yourself the epi pen probably many times. 

http://www.foodallergy.org/document.doc?id=125

[lakeswimr]

Anyway, good luck!

[Shasta0708]

Wow! I read the link. I knew there were a few times i should have used the pin but you are right, there have been many times I should have used it. Very scary.  You are also right that I do not have a plan and will start working on that right away. Thank you!!
I also think I may have celiac but since I had gone without gluten for a long time before, I'm certain it messed up the test results. I do react with digestive issue, bloating, & joint pain, also my husband could tell when I tried to eat wheat (before IgG reaction) because it greatly affects my mood (poor hubby). I turned into not a pleasant person. lol ..I really don't know how to deal with that portion of it now. Especially since I can't eat wheat for a while. Advice??
I feel very overwhelmed by it all. Every time I have done a search on the seed allergens this forum is the only place that I keep finding with the most information. I feel blessed to have seen some very knowledgeable folks here. I will continue to search but do you have any other recommended sites, since you are dealing with a sesame allergy as well? I'm also going to try and find the book you recommended.
Thank you for the help and great advice.

 

[LinksEtc]

Every time I have done a search on the seed allergens this forum is the only place that I keep finding with the most information. I feel blessed to have seen some very knowledgeable folks here. I will continue to search but do you have any other recommended sites, since you are dealing with a sesame allergy as well?

Hi Shasta, I just wanted to say welcome  .

I mostly hang out here at FAS, but these are also very helpful sites:

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http://community.kidswithfoodallergies.org/pages/community

http://www.kidswithfoodallergies.org/resourcesnew.php

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http://www.foodallergy.org/

[Shasta0708]

Thank you. I'm sure this will be my go-to place but trying to get as much info as possible.