Talking Allergies

Fear of Food
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Author:  gwentheeditor [ Tue Mar 27, 2007 5:49 pm ]
Post subject:  Fear of Food

Once you folks get your magazines, I'm really curious to hear whether any of you or your children have experienced the "Fear of Food" syndrome that Jennifer Van Evra writes about in our new issue.

I find it an intriguing subject. And yes, I've had some experience of this myself.

Author:  Helen [ Tue Mar 27, 2007 8:33 pm ]
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Got the magazine--read the article. Yes. Been there. done that.

For a period of time after a severe anaphylactic reaction in highschool, I had trouble sleeping, and I lost about 10 pounds. I forced myself to eat every meal, but I really didn't feel like eating much. Involuntary gagging was a part of my reaction, and for awhile, eating made me feel like gagging slightly.

It didn't help anxiety levels any that a few days after the reaction I went to visit relatives where there were nuts, peanut brittle, chex mix, etc. on the coffee table beside the couch that I slept on.

Also, while the peanut butter in my home went into the trash bin following the reaction, I got anxious about eggy things in the fridge----I wouldn't eat anything from a jar that was next to the mayo for instance.

I did have one major anxiety attack a few days after the reaction---I was in a car for a prolonged period of time and got worried about the reaction coming back. It was so bizarre---either my arm or my entire side of my body (can't remember which) was paralyzed (just from anxiety).

Author:  gwentheeditor [ Wed Mar 28, 2007 10:01 am ]
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Did you develop strategies to work your way through such anxiety, or did the passage of time simply do the healing?

Author:  AnnaMarie [ Wed Mar 28, 2007 1:09 pm ]
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I really liked the article. I wish I had read it when I was going through it. :lol:

I was suffering severe anxiety attacks -- which feel very similar to anaphylaxis. Tightening of chest, difficulty breathing, light-headed, racing heart. And, of course, thinking of being itchy can make you itchy.

Author:  _Susan_ [ Wed Mar 28, 2007 10:04 pm ]
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My husband had a lot of anxiety at first when I was still drinking milk. He was terrified that he would give our daughter milk instead of soy milk. Eventually, I relented when he found Coffee Rich. I just couldn't bring myself to drink my coffee with soy milk.
Now that our home is truly allergen free (as certain as one can be), I get anxious just thinking about bringing in anything that may contain her allergens. We made sure that the catfood is free of her allergens as it tends to get spilled on the floor a bit.
After her first true anaphylaxis reaction, I went through a couple of weeks where I was in a fog. I literally could not think. I thought I was coming down with a cold because I felt like I could not breathe properly. Now, I know that it was stress. I remember an Indian Summer day and she and I were at the park. I was sitting on a park bench and she was diging in the sand under the play structure. All that I could see was her right foot and ankle and it looked so small and fragile. I just thought about how close we came to losing her. How small she is and how she depends totally on us to esure that everything she eats is allergen free.
Time has helped. We are a very safety concious family. Always have been even before she came along. Both my husband and I are the certified worker reps for our companies Occupational Health and Safety Committees-it's just how we think and operate. Thinking about all that we do and all of our plans should another reaction happen helps me to keep perspective.
I did have a moment at the Kyle Dine concert but it was just a wave of emotion and I was able to get a grip. It's that fine line between wanting to allow your child to experience childhood as a carefree time where they feel safe and secure while at the same time raising them with the awareness they must have to stay safe when you are not there is a delicate dance. I was in awe of how many of us try so very hard. I think we are doing a great job.
Putting my energy into advocating for increased awareness, safe schools for all Canadian children and discovering new safe products helps me convert negative energy into positive energy.
Coming here to support and be supported helps a lot. Just the act of putting word to my feelings helps to turn free-floating anxiety into concrete thoughts that can be explored or dismissed.
Sorry to have rambled.

Author:  gwentheeditor [ Wed Mar 28, 2007 10:44 pm ]
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Don't apologize. You are such a lovely writer and clear-headed thinker. What you wrote just now was powerful, touching. Not rambling at all.

Author:  krasota [ Thu Mar 29, 2007 10:03 am ]
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My husband was misdiagnosed with dozens of food allergies (via SPT) five years ago.

He developed an intense fear of food. It's lessened greatly, but he still experiences it.

He lost a lot of weight, getting to about 30-40lbs underweight. He didn't eat much and when he did, it was a very strict rotation diet. He was diagnosed with depression and generalized anxiety disorder. The meds made him nuts. The therapy didn't help. He had "reactions" every single time he ate, whether it was on his safe list or not.

And after a year, we realized that hey--he didn't really have allergies to every single one of those foods.

After two years, we found out that he was having post-prandial drops in blood sugar, a la reactive hypoglycemia. The strict diet was making it *worse* because there was a lack of complex carbs. I saw his reactions--heck, I gave him the epi-pen for one of them and went to the ER twice with him. They LOOK like anaphylaxis, but are really just very low blood sugar.

So . . . five years on, he's doing much better. He can't get rid of the anxiety about food because he still has reactions from time to time, generally to seafood of various sorts. He watches his diet carefully--lots of small meals a day, wholegrains, healthy meats and fats. We're a gluten-free, soy-free, peanut-free household (my needs). He exercises cautiously, since his health-balance is still kinda precarious.

He *is* allergic to shiitake mushrooms and avoids all mushrooms. He had a positive RAST for crustaceans, so he avoids those on doctor's orders. He was tested after reacting to molluscs--he went to a new allergist to have bloodwork done to allay his anxiety, he figured it was his weird reactions. His mollusc RAST was negative.

Oddly enough, I *do* have life-threatening food allergies. And I have a history of disordered eating, but I don't have the same kind of food fears.

Author:  Helen [ Thu Mar 29, 2007 12:02 pm ]
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Coping strategies? No, didn't have any of those. It could have been worse--I didn't have any more panic attacks except for that one, and I was eating three balanced meals a day even if I wasn't eating as much as I used to. The aversion to food went away on its own . . I can't remember how long it lasted, but it wasn't longer than a couple of months.

Counselling might have helped. But it also would have helped if I were given more basic information on the use of and efficacy of the epipen. I wasn't confident that it would be effective seeing as it wasn't until the second dose was administered in hospital that I had any relief from my symptoms. Now I know that the reaction progressed that far because I waited too long to go to the hospital and that it isn't uncommon for people to require a second dose.

After the reaction itself I experienced a few days of really intense anxiety because the doctor in the ER had intimated that the reaction could come back . . .but the possibility of a biphasic reaction wasn't explained fully.

Author:  Jennifer [ Fri Mar 30, 2007 10:06 pm ]
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Hi there,

Jennifer Van Evra here... just thought I'd jump in and say thanks so much for your thoughtful comments. I'm so glad the article has initiated some discussion about a very important - and rarely talked about - issue of fear caused by life-threatening allergies.

I have definitely been there as well!

Author:  shirley [ Sat Mar 31, 2007 10:22 pm ]
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I sent an account of my daughter's anxiety after a severe reaction along to the magazine via email, Gwen. I could post it here.

After reading the article in the magazine, she and I talked about her anxiety, and little did I know that she is having lots of "little" anxiety attacks that feel like an allergic reaction - tight chest and throat, light headedness - she can usually rationalize it away, especially if she hasn't eaten anything, but is having a harder time than I realized actually distinguishing - wondering, am I having a reaction? am I having a reaction caused by anxiety? can anxiety cause an allergic reaction?

Author:  ethansmom [ Sun Apr 01, 2007 11:07 am ]
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Not necessarily the same scenario, but I (not food allergic) felt a lot of anxiety every time my son ate anything for a good couple of weeks after his last (and only) anaphylactic reaction. He had his reaction immediately after eating dinner at home and it was all "safe" food. We still aren't 100% sure what caused it. I noticed that I would watch him with bated breath as he put each bite into his mouth. Any little cough, sound, anything that he would make while eating and I would sit up straight and watch and ask if he was OK. It wasn't logically based at all -- the feelings would just rise up in me. I was able to process why I was feeling what I was feeling and work through it and it dissipated on its own. It really did shake my world for a bit. He did not seem to change his behaviour around food afterwards - at least not that I was aware of.

Author:  ficbot [ Sun Apr 01, 2007 9:49 pm ]
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I don't think my subscription was in time to get this issue, but I checked it out in the store today (I saw it in the end-cap display at Indigo). Great article! As an adult who was recently diagnosed and never had it before, I find that eating out has become difficult for me because there is an uncertainty in that what was safe before is not safe now, and what is safe today might not be safe later. My allergist told me it is really important not to be paranoid, but it is hard not to worry when you can't be 100% sure.

Author:  AnnaMarie [ Sun Apr 01, 2007 10:37 pm ]
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shirley wrote:
- she can usually rationalize it away, especially if she hasn't eaten anything, but is having a harder time than I realized actually distinguishing - wondering, am I having a reaction? am I having a reaction caused by anxiety? can anxiety cause an allergic reaction?

Shirley, I understand what your daughter is going through. Distinguishing between *real* and *anxiety* can be difficult. I will try to explain a bit about what I did.

First, I needed to realize and accept that anxiety really could cause something that felt like an allergic reaction. Then, I would pick what seemed the worst (scariest) at that moment. Maybe it was my heart racing so fast I thought it would burst....or maybe I felt like I was breathing through a straw and would suffrocate. I would close my eyes and actually visualize it improving. For example, I would visualize my heart slowing beat by beat, and I would concentrate on deep breaths. At that point, I would usually realize I was actually taking deep breaths -- and therefore I could take them. Usually that was enough to convince me it was *all in my head* and the symptoms would start to go away.

Often, I would still take benedryl -- better safe than sorry. But I don't think it was necessary.

My understanding is that the symptoms I was suffering (anxiety symptoms) were because when you feel extreme fear your body releases adrenalin. Which is also what your body releases to fight off an allergic reaction. (Anyone with medical knowledge, feel free to confirm or deny this. I don't remember where I heard it.) Anyway, for me, that information meant it all made sense -- in my head if nowhere else -- and I was able to control the fear. At first, I would have to repeatedly visualize. Now, it only takes once. Yes, I do still occasionally go through this -- but rarely, and I take control quicker.

The few times it turned out to be an actual allergic reaction, visualizing did not help at all.

Author:  katec [ Mon Apr 02, 2007 10:36 am ]
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Our daughter was diagnosed at 14 months and at that time she was having many skin reactions to her allergens in addition to reactions due to accidental ingestion. So for us, we were not only fearful of food but also to "dirty" doorknobs, grocery carts, handshakes in church, and kisses from relatives and friends. It seemed like the world around us was covered with her allergens. Our daughter did not lose weight the first year, my husband and I both did. Cutting out her allergens from our diets was a huge change for us. I was pregnant again also in the first year following her diagnosis!

I think knowledge helped relieve fears most for me. The more I read and learned the better equipped I felt to deal with her allergies. I was better able to distinguish between what was a perceived danger and what was a real concern. We did not want her to be anxious about the world around her and to be fearful of food. We tried to teach her age appropriate rules and did not give her adult worries. We decided to take a proactive approach to situations so that anxiety and worry is reduced. When we go to food events, we contact the host to find out about the logistics of the event and we try to anticipate scenarios and prepare accordingly.

Right now we are comfortable with our management strategies but I know that as she grows older and is more independent it will be difficult at times to keep fear in check. As her awareness of her allergies grows, her concern might increase also. It is like we are all living in a cycle of "fear management." You might go a long period in a comfortable stage and then something changes (teenage years, new job, university) or an accidental exposure happens and anxiety returns and you work hard to get back to your comfort zone.

Author:  shirley [ Mon Apr 02, 2007 9:50 pm ]
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Thanks, AnnaMarie - I am going to send your post to my daughter. really good insight. Jane described her anxiety as trying to monitor yourself while your mind and heart are going wild. hard to monitor yourself when you are so distracted by the anxiety.

Katec, you are so right about the "fear management" - cycles of fear - right now I am experiencing one of my bad cycles, even though I am not allergic - I am trying to get a grip on myself with respect to my daughter travelling to Germany in five weeks.

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