My Story

I was diagnosed with a severe food allergy to soy in December 2008. At 31 years old, this is somewhat of an unusual diagnosis. However, I likely always had the allergy. As an infant, my parents were told I was allergic to wheat and peanuts. However, as a child, I had outgrown the peanut allergy (rare) and did not eat a lot of bread; it just bothered my stomach. I always had a "sensitive" stomach. It hurt a lot and would swell often. I hated wearing anything tight around my waist.

By age 15, I started having daily, horrible stomach issues. I started going to doctors. First treatment was for ulcers. I drank more milk and took medicine, and the stomach issues got worse. I was then referred to specialists. I had an endoscopy and colonosopy. I was told nothing was wrong with me physically. I was diagonosed with irritable bowel syndrome (IBS) and the doctor told me I must be depressed and should go see a pyschaitrist. I was in college by now and had wonderful resources for mental health. I went, talked, took medication and it did help me emotionally, but I still had horrible stomach problems. Everyone told me it was stress.

I agreed I was under a lot of stress, but the stomach issues would often be worst when I was doing something fun or relaxing. It really seemed like certain foods made it worst, but there were so many that seemed to bother me that I really couldn't pinpoint any one thing.

Also, I was starting to get really stressed and depressed because at social events I would worry about how bad the "attack" would be. The first thing on my mind at any place was where is the bathroom. When I started working out in the field all the time, I stuck to a very strict "diet" of food that seemed to not cause problems just so I wouldn't have to stop the work and drive into town to find a bathroom. After a while, it became just a part of how I was. Luckily, I met a wonderful, patient, and very understanding guy (my husband, Randy) who also accepted this was just part of who I am and tried everything to help make it better or more bearable.

Over the years, I would have better times and really bad times. The worst began shortly after my second son, Luke, was born in May 2007. Again, doctors attributed it to stress. I also was suffering from post-partum depression and started on anti-depressants again. It continued to get worse. Luke seemed to have stomach issues of his own and was fussy and couldn't sleep well. We suspected either a food allergy (our first son, Zach, had already been diagnosed with severe, life-threatening food allergies to peanuts and fish when he was 15 months old) or acid reflux. I cut out dairy (I was breastfeeding) and it seemed to help Luke. He did not have a food allergy, just lactose intolerance. So I continued to stay on a dairy-free diet to help. I went back to work at this time and had soy milk that morning. I ran to the bathroom 12 times that morning. Not a good way to start back at work after maternity leave. With that and the time to go pump breastmilk, I wasn't getting much work done. When the same thing happened the next day, I really was stressed. I tried rice milk and things calmed down. I slowly worked dairy back into my diet and started giving Luke lactaid when he fed. It worked so all was good.

I still had stomach issues and went to the doctor. I was referred to a research group that was for people to learn to cope better with IBS. The group was good and it really helped to talk with other people dealing with the same issues - how worried we were in social settings, wondering were the bathroom is all the time, how much it affects relationships and your life. We learned about the links between the physical and emotional. We also learned relaxation techniques. It was helpful and a good experience but I still had stomach issues.

By the summer of 2008, it seemed even worse. By September, I went to a new doctor for my annual physical and she was very understanding and open to more ideas. She thought it was classic IBS but did test me for celiac disease and gave me information on gluten-free and dairy-free diets (has been known to help IBS patients - news to me, but I was open to anything). Since I knew dairy-free didn't help from when I was on that diet for Luke previously, I just went gluten-free. I did feel a lot better, but I still had a few "attacks". As one final stone to un-turn, I made an appointment for allergy testing.

I went to my sons' allergist. He had been so good and understanding. He was really patient and the first doctor that didn't make me feel like I'm crazy. We talked and he thought it was wheat as well since I had it as an infant. He asked if there were any other foods we should check. I remembered my first day back at work and the problems with soy milk. He said let's check soy too. We were both shocked when the welt formed on my arm from the soybean skin prick test. But I was relieved to finally have an answer.

Well, relief soon turned into being overwhelmed as I realized that soy is in so many things. I also discovered that I reacted to soybean oil and soy lechitin as well. The Food Allergy and Anaphalatic Network (FAAN) states that soybean oil and soy lechitin are safe for most soy allergic individuals as these do not contain the soy protein. However, I do react to these as well. With most restaurants now using vegetable oil (aka soybean oil), I struggle with eating out. I loved eating out and trying new foods. This was a huge change in my lifestyle. It was depressing at first but, I felt physically so much better, that I started to realized it was going to be okay.

I still have my moments when I get really frustrated and depressed, but I try to remember the pain and the running to the bathroom and how I am so grateful to not have those issues anymore. I try to remember that I have learned how to cook and bake better. I'm saving money. I'm eating more healthy. And, probably most important, is that I'm learning how to function in this processed food and eating out society with a severe food allergy so that I can better help my food allergic child. He can eat more things than I can so I know he doesn't feel too deprived anymore (which was one of my husband's concerns).

So, I've been living with a soy allergy for six months now. I've had several accidental exposures at restaurants. Some reactions were more subtle and I really didn't think there was a reason for it and later would find out that yes, there was something with soy in it that I had eaten. Other reactions were quite severe (throat swelling, shortness of breath), even though I had told the server about my allergy and questioned the food ingredients and potential cross-contamination. I started to get so frustrated, I stopped eating out. I have recently started to eat out some, but it is rare.

I looked for online groups, discussions, blogs, etc. for other adults who have allergies to soy (including soybean oil and soy lechitin). I didn't find much. Maybe I don't know where to look, but I really didn't find much. The little I did find, the people said make everything from scratch and don't eat out. Okay, I'm doing that. But I want to travel. We have a trip to Disney planned this coming winter. I need to try to figure all this out.

So, I'm starting this blog in an attempt to put my frustrations down so I can stop complaining to everyone around me and hopefully start organizing my thoughts. I hope to compile a log of what works, what doesn't, tips, ideas, etc. And, hopefully some other food allergy sufferers will find me and offer advice. Or that my trials and observations will help others just starting to deal with food allergies. So begins the blog of my no joy for soy.