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Author Topic: Good News / Bad News  (Read 4693 times)

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Offline bcam

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Good News / Bad News
« on: May 04, 2012, 05:48:31 PM »
Hi

Found this site as I was searching food additives to once again try to figure out why I have hives. I am "sensitive" (shall we say, since my allergy test comes back negative) to: peanuts, soy, chick peas, green beans & green peas (all legumes). I seem to be very sensitive to oils (even though "they say" people usually aren't bothered by them) and lecithin (even though "they say" people usually aren't bothered ). The good news is that after removing just about everything from my diet, I noticed that I seem to get a bit better overnight, and today before I ate lunch I was feeling pretty good...then after eating lunch (yogurt and an apple), I totally broke out in hives. After researching, I'm guessing it was the Locust Bean Gum in the yogurt. Ugh...This is so frustrating. There's another food gone from my menu. Anyway, the good news is that I found the source of the problem (I think...LOL) and I'm ready to start all over again.

I'm looking forward to learning from this site and empathizing with others who go through this. Honestly, no one really knows what this is like unless you live through it. Thanks for listening.

Offline TabiCat

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Re: Good News / Bad News
« Reply #1 on: May 04, 2012, 10:08:52 PM »
So sorry you are haveing trouble without any medical answers it must make it very difficult to figure out what is trigering the episoids.

May I ask was this testing done by a GP or an Alergist who specialiezes in food allergies. I you have not seen a specailist that maybe a good next step.
Ds - Peanut and Tree nut and a  host of enviro

Texas

Offline bcam

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Re: Good News / Bad News
« Reply #2 on: May 05, 2012, 03:53:51 AM »
It was an allergist who did my testing. I was referred to him by my internest. After going to several dermatologists (because it seemed everything I was experiencing was skin related - didn't realize how lousy I felt until I went off of the soy). All of the dermatologists felt it wasn't an allergy, just a skin condition. Finally, after years of this, my internest sent me to an allergist that he felt could help me figure it out, as my "skin condition" was just getting worse and worse. The allergist told me that the tests are not always reliable and even though it came back negative, it was still possible that it was the soy causing my problems. He put me on a strict no soy diet, no oil, no lecithin. As time went on, I realized I was also having a reaction to chick peas, green beans and peas...and I knew I had broken out in hives from peanuts, which through research brought me to the broader category of legumes. Even though it was difficult to eat this way, it worked like a charm. Over the next two years every problem cleared up and for the first time in years I felt normal again. I hadn't seen him in two years until this outbreak. I just couldn't get rid of the hives. After seeing him he sent me home to try (over the counter) Allegra and Zantac (which didn't really work too well for me - and I'm not sure that it doesn't contain soy) and told me to start all over again with my diet. As I scrutinized everything I was putting into my mouth I found several foods that either changed their ingredients and now contain soy or that I missed the first time around. Keeping up with ingredients is exhausting. I tend to slack a bit when I'm feeling good and scrutinize when I'm not.

It's the soy that gives me the most trouble, because even after two years of trying to avoid soy, it continues to be a learning experience. This whole experience has been quite a journey for me, as I had never had any issues until my fourties. I've gained so much knowledge from sites on line. It's how I discovered how many foods really have soy in them and how many other names it goes by. I have gained a lot of insight from hearing other people's experiences. Thanks for your interest...I'm looking forward to learning a lot from this site.

Offline SilverLining

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Re: Good News / Bad News
« Reply #3 on: May 06, 2012, 06:56:44 AM »
Hi bcam, and welcome to the forum.

I also have adult on-set allergies.  I was thirtyish when I developed them.  I also tested negative when initially tested.  When I first eliminated the foods that were causing my problems (peanuts and sesame seeds) I continued having reactions, though not as often.  Turned out I was reacting to unlabeled cross contamination.
Too many people miss the silver lining because they're expecting gold.  ~~~  Maurice Setter


Offline bcam

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Re: Good News / Bad News
« Reply #4 on: May 06, 2012, 06:30:03 PM »
It's been quite a ride trying to learn to eat a new way after all these years. I seems that with the soy, it creeps in by small amounts and your body seems to tolerate it and then one day it all falls apart. The hives come and then they don't go away until you're totally void of the stuff for weeks or longer. I tend to eat the same things everyday thinking they're safe...however, when you find out that one of your safe foods isn't safe it really turns the cart upside down. Someone told me to try Siggi's yogurt...it doesn't have and locust bean gum. The only ingredient that I don't total understand is the rennet, however, after now learning more about rennet than I wanted to know, it seems that it has nothing to do with soy or peanuts, so I'm going to give it a try. Unless someone knows of anything I'm not seeing. Thanks.

Offline AdminCM

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Re: Good News / Bad News
« Reply #5 on: May 06, 2012, 07:59:30 PM »
LOL a bit at your description of rennet.  Yeah.   :-X  FA = knowing much, MUCH more about food ingredients than is always comfortable. 

My DH has similar problems with soy.  He can tolerate it sometimes and in some forms-- but his allergy is quite different from most people's, and we've surmised that his allergen is probably not the "usual" one.  He does NOT tolerate lecithin or oil well at all.  (Major GI problems--ICK.)

He tests positive, but not via RAST.

It's absolutely mind-numbing the number of things which are soy-derived.

A warm welcome to you! :)


Offline SilverLining

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Re: Good News / Bad News
« Reply #6 on: May 06, 2012, 08:16:23 PM »
Is soy the exception that makes the rule wrt allergies?

My sister had very delayed reactions to soy, which could mean she was eating a product with soy for several days before the reaction started.  By then she had eaten so much of it, it would take a week or more before the reaction stopped.

Too many people miss the silver lining because they're expecting gold.  ~~~  Maurice Setter


Offline bcam

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Re: Good News / Bad News
« Reply #7 on: May 08, 2012, 04:42:45 PM »
Delayed reaction is EXACTLY how it works with me. I thought I was crazy until I started reading about it on line. It seems that I can tolerate very small amounts. However, with that being said, it seems that when I reach a certain threshhold it get's out of control and can't stop the hives for weeks. I'm virtually new to all this still have frustration and anger from time to time. Once (being frustrated about the negative test) I ate whatever I pleased for two weeks straight. Then...all hell broke loose. Had bad hives and skin issues for weeks on end. Never did that again. I must say, when I peeled away all of the soy my body did feel different....normal again, if that makes sense. Now, I do feel the reaction right away. It's like my body has different levels of reaction to soy depending on how much is in my system. I am very grateful that my reaction is not worse, as I know many have much more to deal with than I do. However, it's so frustrating when you're so careful with what you eat and it still takes weeks, if not longer to go away.

Back to the yogurt mystery. I switched to siggy's (no locust bean gum) and still had a reaction, started breaking out in hives as I was eating it. I was shocked. I've been researching this on line and found some link to yogurt and yeast allergies that talked about if you have a yeast allergy you should stay away from peanuts and soy (my problem is legumes...peanuts , soy, etc.). My head is about to explode from all of this. I went off the yogurt today and am better...I'm guessing never to return to yogurt again. All I keep reading is "in rare cases" these things happen. I am just wondering just how "rare" this is.

Hope you all have a good evening. Thanks for the insight. I'm very frustrated right now and it's so good to be able to talk about it.

Offline SilverLining

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Re: Good News / Bad News
« Reply #8 on: May 08, 2012, 06:59:51 PM »
I want to mention two things....one of which might give you some hope. 

First, my sister actually found she was reacting without eating soy.  One example was breaking out in hives on her arm.  Always the same arm.  She went off work (disability) and when the hives finally cleared up, returned to work, and back came the hives.  I drilled her with questions...and finally she realized one change at work...they had a new brand of elastic bands.  she always stuck them around her wrist.  Her boss actually looked into it and the elastic bands had a powder on them....a soy based powder.

Now, the one thing that might give you some hope.  (But, please keep in mind, I am NOT a doctor...just another person living with allergies.)  It sounds like your cup is full.  And when you overfill a cup, it spills.  When I couldn't figure out what I was allergic too, and therefore I was eating them regularly, I started reacting to everything....dogs, cats, and pretty much anything I ate.  When I finally figured out the true allergens and completely eliminated them, the other things gradually stopped bothering me.  It's possible, when you can completely avoid the allergens, you may not react to other things. 
Too many people miss the silver lining because they're expecting gold.  ~~~  Maurice Setter


Offline bcam

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Re: Good News / Bad News
« Reply #9 on: May 09, 2012, 08:59:15 AM »
Thanks so much. Everything you say makes sense and I will keep moving forward trying to take everything with a grain of salt. I will keep monitoring these boards as I find them very helpful.

Offline Judy

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Re: Good News / Bad News
« Reply #10 on: September 06, 2012, 06:43:51 PM »
It was an allergist who did my testing. I was referred to him by my internest. After going to several dermatologists (because it seemed everything I was experiencing was skin related - didn't realize how lousy I felt until I went off of the soy). All of the dermatologists felt it wasn't an allergy, just a skin condition. Finally, after years of this, my internest sent me to an allergist that he felt could help me figure it out, as my "skin condition" was just getting worse and worse. The allergist told me that the tests are not always reliable and even though it came back negative, it was still possible that it was the soy causing my problems. He put me on a strict no soy diet, no oil, no lecithin. As time went on, I realized I was also having a reaction to chick peas, green beans and peas...and I knew I had broken out in hives from peanuts, which through research brought me to the broader category of legumes. Even though it was difficult to eat this way, it worked like a charm. Over the next two years every problem cleared up and for the first time in years I felt normal again. I hadn't seen him in two years until this outbreak. I just couldn't get rid of the hives. After seeing him he sent me home to try (over the counter) Allegra and Zantac (which didn't really work too well for me - and I'm not sure that it doesn't contain soy) and told me to start all over again with my diet. As I scrutinized everything I was putting into my mouth I found several foods that either changed their ingredients and now contain soy or that I missed the first time around. Keeping up with ingredients is exhausting. I tend to slack a bit when I'm feeling good and scrutinize when I'm not.

It's the soy that gives me the most trouble, because even after two years of trying to avoid soy, it continues to be a learning experience. This whole experience has been quite a journey for me, as I had never had any issues until my fourties. I've gained so much knowledge from sites on line. It's how I discovered how many foods really have soy in them and how many other names it goes by. I have gained a lot of insight from hearing other people's experiences. Thanks for your interest...I'm looking forward to learning a lot from this site.