What’s Up With My Unusual Food Sensitivities?
Mammalian products seem to pose an issue for columnist Karen Del Vecchio
Wow! I was completely surprised by the overwhelming response to my recent column about my dairy intolerance. While I’ve known for a while that gastrointestinal (GI) upset is an issue for many of us with Ehlers-Danlos syndrome (EDS), I had no idea how many of us dealt with food sensitivities until I saw everyone’s comments.
I’ve always been susceptible to stomach issues. Even as a child, before I was diagnosed with EDS, I would often deal with GI discomfort. I was apparently a chronically colicky baby who consistently denied my parents the right to a decent night’s sleep. (Sorry!)
As a teenager, I was diagnosed with slow transit constipation, which meant it took my body longer to move food and waste through my digestive tract. Only after my EDS diagnosis did I learn that indigestion is a common EDS issue.
In the past year, however, my GI symptoms have definitely gotten worse. What’s strange is that I’m unable to eat the same foods as people with alpha-gal syndrome, but I test negative for it.
Alpha-gal syndrome is an allergic reaction to mammalian products or other items containing the sugar molecule alpha-gal. That includes dairy, beef, pork, lamb — anything derived from mammals. I started to realize that these foods were causing me discomfort, but I didn’t think they could be related until a friend asked if I had alpha-gal syndrome.
I went to an allergist, and the test came back negative. Because I don’t experience anaphylaxis (thank goodness!), I’m not technically considered allergic, yet if I eat any of these food products, I get terrible GI symptoms. The doctors aren’t sure why, but as long as I avoid these products, my symptoms completely disappear.
Like my doctors, I’m not sure what to make of this. I’ve never been a big meat eater, so giving up pork and beef wasn’t a big deal for me. However, I’ve learned that dairy and meat derivatives are found in a wide variety of products. I have to read labels carefully and Google anything I don’t know. The easiest way to explain what I can eat is a vegan diet with the addition of chicken, turkey, eggs, honey, and seafood.
Thankfully, as long as I avoid mammalian foods, I feel just fine. My pain levels also decrease, as I’m not eating foods that can cause additional inflammation in my body.
While it can be frustrating at times to have to be so careful, I remain grateful that I don’t have anaphylaxis and that I only needed to remove certain foods from my diet to feel better. I’ve always enjoyed cooking, and I’ve been able to try new dishes and adjust my favorite recipes. There’s never a dull moment in my life, that’s for sure!
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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Gin Petty
I was diagnosed with alpha gal after a run-in with a lone star tick last spring and have been learning how to deal with it since then. (And yes, it truly is amazing how many things include mammalian byproducts.) Because the allergy is so newly recognized (2009), many doctors are not current on information and are simply not prepared to deal with patients who present with alpha gal symptoms. At one time a positive diagnosis depended on numbers. Only those who tested IgE greater than 0.10 were considered positive. That has changed. Now doctors are saying "pay attention to your body even if you test negative." If your symptoms are consistent with alpha gal, you have alpha gal. It is not necessary to suffer anaphylaxis to have the allergy. Some people, like me, have only GI issues, no hives, no swelling, no breathing problems. So even if you test negative, don't dismiss that diagnosis.
christy kennedy
Hi, Thanks for all your great posts. Very helpful. Here's something interesting I just learned recently. Among other things, two of my four kids had industrial-strength constipation for many years, and starting as infants. We noticed sensitivities to dairy and other foods, tested, and tried to eliminate triggers and did every other "this will fix it" suggestion and remedy we came across, but the GI issues were incredibly persistent.
Skipping a long list of functional and immunological issues . . . I spoke to Dr. Eli Penn in GA last year when my 26 yo daughter had a zoom appt with him. I'd listened to one of his talks and heard him say "Hirshsprung's disease" is associated somehow with EDS and that it is "present at birth (congenital) as a result of missing nerve cells in the muscles of the baby's colon" which, in combination with perhaps a lack of structural integrity, is maybe why our, and especially our kids' colons were so stretched and non-functional. These two kids have one copy of a variant associated with Hirschsprung's disease, so we think that also may be partly why our son had emergency surgery to repair an intussuception when he was 9 months old. "It just happens," was what we were told at the time.
I probably don't have any suggestions you don't already know, but finding out and if it is a thing, making sure health care providers know, might help with some of the disbelief and head scratching that so often happens.
Sharon Forsyth
Thanks for sharing your story! Some people who test negative for alpha-gal IgE do have alpha-gal syndrome, despite the test result. Also, often doctors order the wrong test, esp. the test for alpha-galactosidase deficiency but also beef/pork, etc. In addition, skin prick tests are unreliable for diagnosis of AGS. Expert Dr. Scott Commins outlines a protocol for sorting out what is going on in these seronegative cases in his paper Diagnosis & Management of Alpha-gal Syndrome: lessons from 2,500 patients. It might be worth ruling out this possibility as AGS isn't just a food allergy, it's an hypersensitivity to many medical products, and people with undiagnosed AGS have died after administration of some of these products.
Jody
I had the same experience. It was thought I had alpha gal so I followed the non-meat and non-meat by-products. Finally, I went to a nutritionist and did a mediator release test and it was determined that I have Mast Cell Disease. I have a very special diet she created just for me based off her LEAP training and the MRT test. EDS and Mast Cell are common together. It got to the point I was reacting to even my thyroid medications and was even fainting and had anaphylaxis. Now that I know about Mast Cell, I learned that I have to work with a nutritionist from now on. My daughter was diagnosed with Mast Cell as a new born by a team of French Doctors in the US. She is now age 25 but it took this long for me to understand that Mast Cell is genetic and shows up eventually.
Sharon Forsyth
Jody, FYI, most thyroid medication is made from dessicated pig thyroid and many people with alpha-gal syndrome react to it. It's one of the more problematic medications for us. There are synthetic alternatives, if you think this might be the issue. Up to 5% of people with AGS develop symptoms consistent with mast cell activation syndrome.