Meet the Mom behind the Story:
I am the mother of a 13 year old who was diagnosed with Severe Ulcerative Pancolitis in July 2012. My husband also has mild colitis which is controlled completely through controlling stress, diet and yoga.
Colitis and Testing for Food Allergies
My 13 year old daughter was diagnosed with severe ulcerative pancolitis in July of 2012. Her GI did not recommend testing her for food allergies but because of my husband’s experience of controlling his colitis through diet, we had her tested anyway – the test for 90 potential allergens. The results showed she was allergic to soy, eggs, almonds, green peas, milk and cinnamon. Now, needless to say, there is no way we could have ever figured all this out for ourselves because we never just eat one food at a time!
So, after we eliminated all that, she was going great on Lialda, VSL #3 and supplements like turmeric, fish oil, etc. Then suddenly…the cramps, the diarrhea, no blood or mucus yet, but we knew what was coming. We started trying to figure out whether she could have gotten any of the allergens. Sure enough, the 100% juice blend I’d given her the morning it started — had soy lecithin. Don’t bother to give me the “Bad Mother Award” for not checking before, I’ve already given it to myself many times over!
This is the first reason I wanted to share the story. If we didn’t know about the soy, it would feel like this just came out of the blue and we would feel and be so much more helpless. So far, every time she’s gone in the wrong direction, it’s been because she consumed one of the foods that is toxic to her body specifically. I know people say “pay attention” and you can figure it out. To me, knowing for sure is so much better! I cannot imagine trying to make food choices for her every day without knowing. It’s hard enough when you do!
Some ASA Medications Have Common Allergens
The second reason I wanted to share our story is also important…some of the ASA 5 medications have common allergens in them and pharmaceutical companies are not required to disclose this information the way food products are. Legally, packaged foods sold in the US are required to have labels with clear words (they can’t call soy “miso” and things like that) if they contain any of the top food allergens. Medications have no such requirement for inactive ingredients. We had to change her ASA 5 medication because she was on one that contained either corn or soy and the company would not disclose which (they said they didn’t know for sure – which is strange because even candy manufacturers are required to disclose!) Since corn and soy are two of the most common food allergens in the US, this truly surprised me and is one of the reasons I wanted to share our story. We are now convinced it was soy because she did not truly start to heal until we changed the ASA 5 medication to one that is confirmed not to contain soy.
I would hope that everyone who was struggling with ulcerative colitis would know whether they have food allergies and very specifically what those allergies are. The results even give you a rating of just how sensitive your body is to specific foods. It may not be the end all/be all answer for everyone but it is a piece of information that just might be critical. Warm wishes and gentle hope for all of you. Thank you for being part of our support community and thank you Adam, for giving us a place to gather.
written by “Mother and Wife of UC’ers”
submitted in the Friends and Family of UC’ers Venting Section