Talking Allergies

I need some help and don't really know where else to turn. I have seen about 25 doctors in the past 11 months for various reasons all I believe stem from allergies. In April 2008 I was diagnosed with a , birch, dust mite, tons of grasses, mould, soy, peanut (which I already knew) and hazelnut allergy and Oral Allergy Syndrome. I was 4 months pregnant at the time. I figured it was no big deal because I already avoided nuts and "there can't be many things with soy in it". I was sure wrong on that.
I had been avoiding dairy and eggs because milk was giving me a reaction as was egg but I tested negative for it.
I was okay with eating for a few weeks, then I started reading labels and seeing just how much contained soy. I had weird reactions still to dairy again (liquid dairy was the worst like cream and milk, especially organic) so I cut it all out again except for one type of cheese. Apples were giving me an itchy mouth but I kept eating them.
On June 19th 2008 I had a severe panic attack which left me unable to eat for the rest of the day, which let to severe food restriction for the rest of that week. I only had about 20 items on my "safe list" of food I would eat. I was still pregnant but forcing myself to eat.
The panic attacks were getting worse as I thought everything that wasn't on my safe list was going to end up in anaphylaxis and that I was going to die. I talked to several medical professionals about it who said I was having pregnancy related anxiety.
I had not gained any weight yet that pregnancy but then I started to loose weight. No one seemed concerned as I was heavy before I became pregnant. I was told it was because I was eating healthier when in fact I was just unable to eat much at all.
I began to have panic attacks after everything I was eating, even my safe foods, and would need to have a shower after I ate anything, sometimes even a glass of water and vitamin. I did stop taking vitamins unless they said they didn't contain egg, soy or dairy.
My son was born and right away my eating was cut almost in half. I saw the allergist again 10 days post partum for another skin test and this time tested positive for corn (great! how much stuff can have corn in it? again, I was sadly mistaken) and negative for soy. I was confused and my questions were answered with vague responses of "just don't eat anything with those foods in them" and then I was being shoved out the door with brochures to buy mattress covers for mite allergy.
I was even more confused and anxious as ever.
I had had in the past 4 years three bouts of anaphylaxis (two food and one medicine) and was very fearful of another.
I went to my GP with a list of questions and begging him to help me. He got me into another allergist and to see an ENT, Nutritionist, Therapist and a Speech Pathologist.
This was 2 months post partum and I was down 40 pounds from prepregnancy weight. I was so scared to eat almost anything. Unsure of what was a real allergy there was 10 things on my safe food list. Then I found a corn allergy site and listed what I was eating. I was told all of those things contained corn. I didn't eat a thing for 5 days.
Google became my best friend as I tried every imaginable possibility of some way to find myself help.
I saw a new allergist and tested positive for soy and corn. He send me for milk, egg white and yolk RAST. All three came back negative. It was 4 months since my son was born and I was down 50 pounds. I was alarmed that no one seemed very concerned about me at all. Every doctor that I went to said it was anxiety related yet not one of them was able to find me help. I was extremely frustrated explaining myself to the doctors especially the nutritionist who insisted I just "eat". I felt very alone as I figured I was the only one experiencing such paranoia with allergies.
I am now six months post partum and 65 pounds down. I don't have much weight left before I am underweight and still have no idea where to turn for help. I've even called eating disorder clinics who don't know where I could get help.
I have another appointment with my GP on Monday in a last ditch effort to get him to really try to find someone.
I have a friend whose son has allergies and she suggested looking here.
So does anyone know where I can get help?
Sorry this is so long and thank you for reading.
Melissa

Oh Melissa, you've been through so much! All of whatyou are saying would be scary enough to endure but to be pregnant at the same time...wow.

So, I'm assuming your son is fine and he must be on a bottle because from the sounds of this, there is no way you'd be able to nurse.



Was this a blood test or a skin prick test?
What led you to be tested in the first place?
Do you have an auto-injector?


Well, you're not pregnant now! Without knowing more, I tend to agree with you that your problem initiated with the allergies. You have seen many Dr's trying to get definative answers but this is a condition with vague answers. Allergists need your history to be able to put all of the puzzle pieces together.

The vexing problem with food allergies is that we do need to eat to live and yet, that very activity acn be dangerous.

1. You need to know what you can eat.
Make a list of the food you know you can eat.

2. You need to know what the risks of anaphylaxis are and what to react to.
You stopped eating after a panic attack after eating an apple (OAS). Where you given information about OAS? Can you tolerate cooked apple? You need to learn what to do about allergic reactions how to identify which are serious and which are mild as well as how to manage the anxiety.

3. You need to find a professional that you can work with and stay with.
Developing a relationship with a Dr. whom you trust and who has a clear picture of your condition will benefit you.

4. You need ways to cope with the anxiety that comes with food allergies.
It is normal to be anxious and you will have times you feel OK and others when you feel overwhelmed. You need the tools and support to function for your sake and your son's.

5. You need to take control back in your life.
Your anxiety will lessen when you start to feel in control. You have allergies; they don't have you. I caution you to read slowly and don't try to take too much information in too fast.

What town are you in? Is there a support group you can attend? Do you have help looking after your son?

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

Melissa, a hug first. You poor thing - as Susan has said, what a tough, tough time you've been having.

Good for you that you've got the resolve to look for help. It is available through the right experts (not that awful nutrionist!), and let's see if we can also be of some minor assistance and definitely support here in getting you get back to feeling your former self.

At Allergic Living mag, we've written quite a bit about anxiety and food allergies. Sometimes it is just a matter of identifying which foods to avoid - and this has clearly been confusing in your case. But allergy and anxiety experts have also told us that, following anaphylaxis, some people will develop anxiety around many foods (not just their allergens), because they no longer trust what's on their plate and fear reactions. This can even be a form of post-traumatic stress.

Read the excerpt of this article here: http://www.allergicliving.com/features.asp?copy_id=93 It's from 2006, and that issue is sold out. But if you send me a "pm" with your address, I'll send you one of my own few copies.

In doing another article on preparing kids to manage anaphylaxis without scaring them, I became aware of the Anxiety Disorders Assn of Canada. They're here, and could probably put you in touch with a good anxiety expert if you need one. http://www.anxietycanada.ca/english/contact.php They seemed very helpful when I called.

Their B.C. chapter also has some wonderful online resources/videos:
http://www.anxietybc.com/resources/introduction.php

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Allergic to soy, peanut, shellfish, penicillin

Hi Melissa,

Thanks for sharing your story. While I don't have much advice for you, I can say that I totally relate to your anxiety. While my anxiety is under control now, after a major reaction for about 6 months I couldn't eat safe foods without anxiety attacks, having a shower in the middle of a meal (like you said), feeling like there were hands gripped around my throat, etc.

What eventually made me get better was seeking counselling for it. After I described the physical sensations of an allergic reaction, the feeling of slipping in and out of consciousness, not being able to breathe, etc. the therapist described my reaction as "an ordinary reaction to extraordinary events." Seeing it this way really helped - it wasn't that I was a total nutjob, this really was an awful situation and I was doing the best I could with it. Sounds like you are, too.

For me, it was learning to trust myself again, that I could prepare safe meals for myself and that I could handle a reaction if one happened. I didn't eat at restaurants for at least a year, and only ate food I had prepared myself.

I would suggest seeking counselling or therapy, and learning strategies for coping with the anxiety symptoms as they come. I'm sure this is something you've thought of, but it made a world of difference for me.

Take care of yourself, and know you're not alone in this!

L

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ana to peanuts, nuts, eggs, shellfish, bananas
mild asthma and eczema, seasonal allergies

Melissa, I hope you've had a chance to read the Corn Allergy section. Please read it...there is a ton of information there that might be of help to you in trying to figure things out. There can be corn in/on things like milk/dairy/cheese, fresh fruit, fresh meats, vitamins, medication, etc. etc. etc.

Skin prick



I was having reactions to a lot of foods and trying to figure it out on my own was not working.



Yes, two. On me at all times.



The allergist I am seeing now is wonderful. He has taken a full history and listens to me. I see him every two weeks right now.




The problem with that is I do not know what I can eat. I have foods that are "safe" then someone will say to me "oh that might have soy/corn in/on it." Well that's great and all but how do I know for sure? It just adds to the anxiety. If I removed everything I read or listened too I would be down to tap water and even at that someone said fluoridated water contains corn. I don't know what to take at truth or myth.



Yes! Absolutly!!! That is my biggest issue. I do not know how to find out the answer to that. I do not know if the corn or soy allergy is anaphylaxis. I am to assume the peanut is (as per allergist #1 &2) but are the others just allergys? About 15 years ago I tested positive (skin prick) to a whole slew of things all of which I kept eating and all of which gave me very little or no bother at all (except for strawberrys which made my mouth slightly itch). Is the corn and soy like that or is is serious and how do I go about finding that answer?
I was given information about OAS but then I heard is can sometimes people can have anaphylaxis reactions to some of those items listed. How do I know if that is me. I clearly see myself in a circle of anxiety and paranoia accociated with all this and do now know how to get out.



Absolutly. I don't know how to find that doctor and what type of doctor that would be.



This is all very clear to me I just do not know how to find the help.



I have been reading about allergys for the past year. Almost everything I have read since then has only scared me and deepened the anxiety (with the exception of this site and a few others)



I'm in south Vancouver Island. I have help with my children if I need it.

Thank you very much for your reply!
Melissa

Thank you very much. That article is one that came up in a google search I did. I wasn't able to acces it so I will take you up on your kind offer. I will pm you.

Thank you very much!
Melissa

Thank you SO MUCH for posting this. I really thought I was the only one.



What kind of therapist was it?



I trust myself to be totally safe I just don't trust what I am cooking. Hmm...that was quite the condradiction.



Thank you!
Melissa

Thank you for your reply. When I am feeling a bit less anxious about it I'll take a look.

Melissa

There is a support group, the Metro Vancouver Anaphylaxis & Allergy Group. I would encourage you to meet with people in your community who are dealing with this problem. Maybe they can point you in the right direction regarding Safe foods or medical professionals.

Members come from across the Lower Mainland area of B.C. This group is parent-run and all parents of children with life-threatening allergies are encouraged and welcome to join. Even if you can't attend our meetings in person you can always stay connected to the group electronically and will likely meet someone from your community that is willing to provide information, educational, resources and of course support. For more information about this group please email: vancouveranaphylaxis@gmail.com

I hope it helps and we're always here!

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

Thank you for the info. I'm going to email that group.

Melissa

Melissa, I hope all gets figured out for you very quickly.

Just a note as to the time this is all happening to you, when I had my last child I was very reactive to items that had never bothered me before.
I am sorry I cannot remember how long it lasted (ten years ago) but I reacted to foods and antibiotics that had never bothered me in the past. I must say this was not anaphylaxis type of reactions but hives and such. But since I have had many anaphylaxis reactions in the past I was getting to where I was afraid to eat many things.

When the article came out in allergic living about food paranoia, it was so great to read, I am not alone.
With time, testing, and learning ways to cope, it all came together.

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Me-Allergic to Peanut, Tree Nut, Coconut, Shellfish, ASA and Asthma
My Husband and Children No Allergies

My allergist has always said 'if you are already eating it and it's not a problem, keep eating it.' So if something 'may have' corn but you have been eating it and it's fine, he would say keep eating it and if it later becomes a problem, we can re-evaluate.

Also with fruits, with OAS you can usually have them cooked. Have you tried having cooked fruits?

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Asthma and eczema
Drug allergy (succinylcholine)
Food (corn, raw apples, green beans, tree nuts, flax)
Misc (pollen, grass, mold, dogs, cats)

Thanks for weighing in Ficbot, I was thinking that you and Eldi would have some good advice!

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

Hi Melissa,

I was a student at the time so it was a counsellor from the student health clinic. This person didn't have any special knowledge or expertise relating to allergies but was still able to help me develop coping strategies to lessen the anxiety. I also found that talking out the irrational thoughts I was having took away some of their power.

I also have a very supportive partner who would sit down with me, help me pass some time when I needed a break from food, would indulge me by telling me that no, my face wasn't swelling (even when I knew it wasn't), etc. That was very helpful, and I would suggest having someone you can talk to or call when you're in those moments of panic. Just having my partner say, "look, we've been through this before, we know what's going on, and it will pass" made a world of difference.

I also love ficbot's comment about what her allergist said - this is so true. Also, the less processed the food you're eating, the more you can generally be sure of what it's made of, right?

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ana to peanuts, nuts, eggs, shellfish, bananas
mild asthma and eczema, seasonal allergies