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Posted by SilverLining
- May 02, 2014, 07:44:30 AMWith sesame, I just must all the things that are may contain, that I cannot find safe. Like a decent hamburger bun.
Posted by PurpleCat
- May 01, 2014, 03:23:48 PMQuote from: Macabre on April 26, 2014, 05:45:32 PMI never craved sesame before, and I don't now. Does anyone?
I had to comment on this! Cause yes, I do!!! LOL! It's a weird one! And since DD is allergic and they are no longer in my house.....I see them everywhere and want them! I miss those bagels coated in sesame seeds, I loved them toasted in my salads, I made salad dressing and stir fry with tahini.
Posted by YouKnowWho
- May 01, 2014, 02:24:05 PMMy MIL was in her 70's when her intolerance to gluten popped up. Doesn't fit allergen criteria and refuses to be Celiac tested because doctors just want her money 
(FWIW - I love my MIL dearly, she lives with us but she and I have very differing opinions of medical care).
Regardless of what the diagnosis is - she cannot eat gluten (and a few other things as well). And she misses it dearly. And has struggled with finding a gluten free option that tastes gluteny (if that makes sense).
DS1 on the other hand has only had items containing wheat and barley a few times and it has ended badly even with just trace amounts. He is much more tolerant of gluten free/egg free items than she is because honestly, he has never had any different. He doesn't look at a menu and say "Oh look at all that delicious food that I cannot eat" - he is more of the "Oh goody, I can order a bunless burger". Not to say he doesn't have moments like you do. He failed an egg challenge a few years ago and he really liked the taste of eggs. In his head, eggs limit his choices way more than gluten does (and I do agree that egg free and gluten free shopping/eating is harder).
My banana and eggplant allergy are late in life developments. Yes, I miss both of them. And I still remember the taste of baby aspirin (because I am older than dirt and aspirin was still recommended for kids). At the same time though, I am usually not limited to options short of going to a middle Eastern restaurant so my experience is different than yours.
Irony? My MIL moved in when DS1 was 9mo old. She used to lament over and over and over again about how she wanted to be the Granny that baked for him. I admit, when he was younger it was much tougher because his list of false positives was huge. But she never wanted to make the effort when he was down to just gluten and egg. My SIL went out of her way though and she was avoiding none of it. Now that my MIL cannot tolerate gluten, she has been the one to take up the baking end of things. (Caveat here - I was not great at baking that stuff either and he was happy with Enjoy Life cookies, EnerG bread and many other prepackaged treats but I don't think felt this need to say over and over in front of him that I couldn't bake for him).
(FWIW - I love my MIL dearly, she lives with us but she and I have very differing opinions of medical care).Regardless of what the diagnosis is - she cannot eat gluten (and a few other things as well). And she misses it dearly. And has struggled with finding a gluten free option that tastes gluteny (if that makes sense).
DS1 on the other hand has only had items containing wheat and barley a few times and it has ended badly even with just trace amounts. He is much more tolerant of gluten free/egg free items than she is because honestly, he has never had any different. He doesn't look at a menu and say "Oh look at all that delicious food that I cannot eat" - he is more of the "Oh goody, I can order a bunless burger". Not to say he doesn't have moments like you do. He failed an egg challenge a few years ago and he really liked the taste of eggs. In his head, eggs limit his choices way more than gluten does (and I do agree that egg free and gluten free shopping/eating is harder).
My banana and eggplant allergy are late in life developments. Yes, I miss both of them. And I still remember the taste of baby aspirin (because I am older than dirt and aspirin was still recommended for kids). At the same time though, I am usually not limited to options short of going to a middle Eastern restaurant so my experience is different than yours.
Irony? My MIL moved in when DS1 was 9mo old. She used to lament over and over and over again about how she wanted to be the Granny that baked for him. I admit, when he was younger it was much tougher because his list of false positives was huge. But she never wanted to make the effort when he was down to just gluten and egg. My SIL went out of her way though and she was avoiding none of it. Now that my MIL cannot tolerate gluten, she has been the one to take up the baking end of things. (Caveat here - I was not great at baking that stuff either and he was happy with Enjoy Life cookies, EnerG bread and many other prepackaged treats but I don't think felt this need to say over and over in front of him that I couldn't bake for him).
Posted by SilverLining
- April 30, 2014, 09:30:18 PMQuote from: cammiec on April 28, 2014, 02:01:31 PM
. I think breads are what I crave the most, which I realize sounds odd.
Why would you think that sounds odd? Makes complete sense to me. We crave what we cannot have. For a long time, it was crackers I was craving.
I also went through a period of craving actual peanuts. But, what I needed was a substitute with the right texture. When I found something crunchy, it seemed to fill that gap for me,
Posted by twinturbo
- April 28, 2014, 06:49:10 PMI think what lakeswimr meant is once you have anaphylactic reaction which involves a defined list of objective symptoms involving two or more systems within a short window upon ingestion (however the ingestion occurs) thereafter your body will seemingly react to nearly everything in its wake for a week or two.
For children they can have a set of allergens crop up because they are diagnosed so young they haven't had the varied diet that an adult has for years. Adults typically do not suddenly develop a large set of allergens all at once. It's hard to tell with "minor and major" reactions as a descriptor.
Living by avoidance is tough, as you are finding out, in more than just diet needs. It crosses over to every facet in life where there is food... which is everywhere. lakeswimr is not doubting you, she's sharing solid advice on best known practices out of concern of how you have to live when you are reaching out for support on how emotionally challenging it has become because you are crying and dealing with cravings for foods that are on your list.
Not all allergists - too few, unfortunately, understand both the burden of avoidance and also the potential damage of confirming allergens based largely on SPT without a confirmed history of reaction by either anaphylaxis and/or and in office food challenge. The newest data coming out shows that positive skin testing and the size of wheals is even less predictive as previously thought.
Additionally, if what you are experiencing are minor reactions to gluten containing items it would be in your best interest to make truly sure it isn't Celiac. Especially if you are not avoiding barley. We don't know what your history is, how you're categorizing minor reactions and if your doctor is truly following current best practices specifically for IgE-mediated allergy. What we can offer is support and up to date information for you and anyone else looking for support in this manner.
For children they can have a set of allergens crop up because they are diagnosed so young they haven't had the varied diet that an adult has for years. Adults typically do not suddenly develop a large set of allergens all at once. It's hard to tell with "minor and major" reactions as a descriptor.
Living by avoidance is tough, as you are finding out, in more than just diet needs. It crosses over to every facet in life where there is food... which is everywhere. lakeswimr is not doubting you, she's sharing solid advice on best known practices out of concern of how you have to live when you are reaching out for support on how emotionally challenging it has become because you are crying and dealing with cravings for foods that are on your list.
Not all allergists - too few, unfortunately, understand both the burden of avoidance and also the potential damage of confirming allergens based largely on SPT without a confirmed history of reaction by either anaphylaxis and/or and in office food challenge. The newest data coming out shows that positive skin testing and the size of wheals is even less predictive as previously thought.
Additionally, if what you are experiencing are minor reactions to gluten containing items it would be in your best interest to make truly sure it isn't Celiac. Especially if you are not avoiding barley. We don't know what your history is, how you're categorizing minor reactions and if your doctor is truly following current best practices specifically for IgE-mediated allergy. What we can offer is support and up to date information for you and anyone else looking for support in this manner.
Posted by Janelle205
- April 28, 2014, 06:28:55 PMDepending on your preferences, you can still probably have luck eating out, as long as you are selective with restaurants. We have a different allergy set, but I am able to get a steak and a baked potato in most restaurants. With your garlic allergy, you'd want to be sure to ask them to skip any seasoning mix and probably just season with salt or not at all. I typically ask for them to cook the steak in a clean pan instead of on the grill. When I've eaten grilled meats while at camp, the cooks seal my food in heavy duty foil while in the kitchen, and then it is grilled and given to me still in the foil, so that might be an option as well.
If you like steak sauce (I don't) and have a safe version, most restaurants should be ok with you bringing that in to have with a meal as long as you ask ahead or are inconspicuous. I've brought my safe salad dressing to some places before.
If you like steak sauce (I don't) and have a safe version, most restaurants should be ok with you bringing that in to have with a meal as long as you ask ahead or are inconspicuous. I've brought my safe salad dressing to some places before.
Posted by cammiec
- April 28, 2014, 02:01:31 PMThank you so much for all of the replies. I know it sounds ridiculous, and yes I definitely prefer living life feeling well over being anaphylactic! I have only had a few major reactions, and I agree that avoiding those foods is not a problem. I have actually had minor (and some major) reactions to all of the foods listed in my signature, none of those are false positives.
I think what has been hard for me is not being able to eat out or eat with other people. With being allergic to garlic and wheat, its just not really an option. My family does a great job of cooking things that I can eat, that has been very helpful. I think breads are what I crave the most, which I realize sounds odd. I make my own bread and pizzas, but nothing compares to the originals I grew up eating.
It helps knowing that it will eventually pass. =)
I think what has been hard for me is not being able to eat out or eat with other people. With being allergic to garlic and wheat, its just not really an option. My family does a great job of cooking things that I can eat, that has been very helpful. I think breads are what I crave the most, which I realize sounds odd. I make my own bread and pizzas, but nothing compares to the originals I grew up eating.
It helps knowing that it will eventually pass. =)
Posted by YouKnowWho
- April 26, 2014, 06:19:59 PMI still miss bananas, but I would miss breathing more 
Posted by Macabre
- April 26, 2014, 05:45:32 PMI'll say that I did develop my sesame and shellfish allergies at the same time.
I just don't crave shellfish. At all. Every once in a while I'll crave the fried shrimp my late father made for me, but I think it's not really the shrimp itself, yk? It was a thing he really liked doing for me.
I never craved sesame before, and I don't now. Does anyone?
But sweets--yeah, if I couldn't have a cupcake, I'd probably really crave that.
I just don't crave shellfish. At all. Every once in a while I'll crave the fried shrimp my late father made for me, but I think it's not really the shrimp itself, yk? It was a thing he really liked doing for me.
I never craved sesame before, and I don't now. Does anyone?
But sweets--yeah, if I couldn't have a cupcake, I'd probably really crave that.
Posted by CMdeux
- April 26, 2014, 02:11:12 PM^ Truth, that. I actually PREFER eggless versions of many things now, after over a decade. The eggy versions just taste... I dunno, over-done. Cheesecak-ey-rich.
I also do not like nut/seed butters IN most things now. I was at one time a serious PB devotee. Obviously, "at one time" was prior to the first frantic emergency room visit.
Do I miss shellfish? Sure. But I'm VERY sure that scampi would not be tasty. Not given what it smells like. So it's not really the food that I crave, so much as the enjoyment of being able to eat that food the way that I once did. I don't know-- those are definitely two different things in my head/heart, though-- so while I could make myself some kind of substitute for Paella, it wouldn't really satisfy that particular longing-- for me. The twinges like that? Yeah, they go away. It's like a metaphorical phantom limb pain.
I also do not like nut/seed butters IN most things now. I was at one time a serious PB devotee. Obviously, "at one time" was prior to the first frantic emergency room visit.
Do I miss shellfish? Sure. But I'm VERY sure that scampi would not be tasty. Not given what it smells like. So it's not really the food that I crave, so much as the enjoyment of being able to eat that food the way that I once did. I don't know-- those are definitely two different things in my head/heart, though-- so while I could make myself some kind of substitute for Paella, it wouldn't really satisfy that particular longing-- for me. The twinges like that? Yeah, they go away. It's like a metaphorical phantom limb pain.
Posted by Janelle205
- April 26, 2014, 01:28:18 PMIt's a process, but eventually you learn to make most anything that you used to enjoy. I even have an apple-free 'apple pie' that I make. I have a hard time eating it though, because it seems too much like the real thing and kind of makes me nauseated. It's good for family members though, and it is safe for me to be around.
There is only one food that I can't replicate that I want sometimes. I miss my Mom's deviled eggs occasionally. I am pretty sure there is just no way that a safe version of those is going to happen for me.
At first, some substitutes might seem that they aren't as good, but you adapt to them pretty quickly. My Mom actually made a version of a recipe that I make for my brother occasionally when I wasn't around, and she used 'normal' versions of a few ingredients instead of the 'safe' versions that I use. My brother wouldn't eat it - he said it wasn't as good as when I made it. He isn't allergic, he just thought that my version tasted better.
There is only one food that I can't replicate that I want sometimes. I miss my Mom's deviled eggs occasionally. I am pretty sure there is just no way that a safe version of those is going to happen for me.
At first, some substitutes might seem that they aren't as good, but you adapt to them pretty quickly. My Mom actually made a version of a recipe that I make for my brother occasionally when I wasn't around, and she used 'normal' versions of a few ingredients instead of the 'safe' versions that I use. My brother wouldn't eat it - he said it wasn't as good as when I made it. He isn't allergic, he just thought that my version tasted better.
Posted by twinturbo
- April 26, 2014, 11:30:20 AMMost do not crave the allergens that trigger their anaphylactic reactions. Typically it is the opposite as they are inherently avoidant of the allergen itself. What most crave are foods free of the specific triggering allergen coupled with desire to have the freedom to eat foods that are nominally free of the anaphylaxis-inducing allergen but are so at risk for cross-contamination it falls under the prescriptive action to strictly avoid. I don't think most would understand the idea of avoidance to enjoy a global improvement of health as much as avoid episodes of anaphylaxis. We live with do or die rather than worth avoiding to feel "better". There's no comparison or superlative as there would be for an intolerance if you see what I mean.
Posted by lakeswimr
- April 26, 2014, 08:36:13 AMIt sounds like you had a serious reaction or reactions, got tested and then got a list of foods to avoid based on test results. If that is the case you should know that you might have a bunch of false positives. Testing has a very high false positive rate and can't diagnose a food allergy. It is very likely that you are only allergic to one thing. People can develop food allergies at any age but people usually do not develop whole lists of allergens suddenly. It is much more likely you developed a single food allergy.
A good allergist will work with you to figure out whether or not you are allergic to all the foods you are currently avoiding. This might include doing some in office food challenges. I highly recommend it over avoiding a long list for life when you might not be allergic to all those foods.
As for cravings, I think it is very important to find foods that do not contain your allergen/s and that you love. If that means you keep a stash of safe lollipops or whatever with you at all times I'd do it. What are you avoiding?
A good allergist will work with you to figure out whether or not you are allergic to all the foods you are currently avoiding. This might include doing some in office food challenges. I highly recommend it over avoiding a long list for life when you might not be allergic to all those foods.
As for cravings, I think it is very important to find foods that do not contain your allergen/s and that you love. If that means you keep a stash of safe lollipops or whatever with you at all times I'd do it. What are you avoiding?
Posted by momma2boys
- April 25, 2014, 10:36:13 PMWhat are you allergic to? Post a list and maybe we can help with safe items.
Posted by spacecanada
- April 25, 2014, 04:40:41 PMYou may just need to find substitutions for these things. You should be able to find a safe cupcake recipe. Many safe bread recipes exist too. For me, I was sick a lot before being diagnosed, so I didn't crave nuts at all. Peanuts, on the other hand, became an issue much later and much more suddenly, and once I had a suitable substitute for peanut butter (Sunbutter) I didn't crave it as much because I knew a safe option existed and was readily available. Sometimes it was a texture issue, and finding something with similar texture to satisfy whatever the craving was. Crunchy snacks were the hardest thing to find, mostly because my normal crunchy snacks (seed trail mix, granola bars) weren't safe any more due to cross-contamination. I've since found safe seed trail mix and other crunchy snacks that satisfy those cravings and keep me safe. For you, finding something chewy for the Twizzlers may do the trick. I'm not sure if that helps any, but hopefully it does.