On August 8, 2015, I celebrated three years on a TED (Total Elimination Diet).
If you had told me my TED would last three years back in August of 2012, I wouldn’t have believed you. If I did finally believe you, I would have curled up in a ball and cried.
Nonetheless, three years later I am still eating the highly restrictive diet necessary to keep my son alive in those early days.
Few TED’s are perfect from the get-go; mine has undergone changes over those years. At first, I was eating 12 items. That was quickly reduced to 10 items. Eventually, it dropped to 6 items. (Grass-fed beef, organic russet potatos, olive oil, sea salt, black pepper, and stevia, in case anyone wonders what finally allowed Zac to start finding safe foods!)
Now I eat those 6 things, plus all of Zac’s new safe foods, which means that while my diet is still small, it is actually quite easy to maintain. I can finally make anything from appetizer to dessert with the limited items I have to eat.
I still carry all my food with me to work…and all my water, too. Honestly, there are times I would love to be able to simply call for room service rather than deal with cooking my own, safe food on the road; then, though, I think about where the chicken or beef or vegetables would come from in that dreamed-of room service meal and, suddenly? The effort involved is worth it again.
Never again will I eat as I did pre-FPIES.
For starters, I lost 63 pounds I desperately needed to lose by going on such a restrictive diet. Though my weight has fluctuated a bit since spring, when Zac began to wean, and I’ve put back on about 6 of those lost pounds, I’m still healthier and more trim and active than I had been my entire adult life. I won’t lose that.
Secondly, I discovered I have food intolerances along with my boys. While my health isn’t perfect since the onset of the TED (I have had a few infections and general sicknesses along the way), I no longer suffer from constant, debilitating sinus infections as I always did prior to the TED. I no longer have any symptoms of IBS, which I’m sure I would have been diagnosed with had I ever bothered to pursue a diagnosis. My sleep, sporadic though it may be, is far better; I fall asleep easier and faster, and sleep better when I am asleep than I ever did pre-TED.
I never want to return to my life of general malaise and feeling “run-down” all the time.
Third, my knowledge of our food supply is FAR greater than it was back when I ate the SAD (Standard American Diet). I don’t have the time or energy to devote fully to it, but I’ve become a bit of a food activist over the last 3 years. It’s appalling to me how corrupt and wicked our food supply is, and even more disheartening to know that so many Americans spare that issue so little thought or concern.
Will I avoid restaurants and convenience food forever? I really can’t say. With my lifestyle as a Flight Attendant, I can’t guarantee I won’t “cave” once in a while on the road and simply grab a salad somewhere. Honestly, though, based on my food intolerances and the fact that I don’t want to ever feel so badly again, my options for “caving” will be rather limited. Odds are, I’ll be carrying everything I eat with me to work for the rest of my career.
I simply prefer to eat real food these days.
After three years on a TED, I considered what I might say to someone just embarking on one.
Honestly, at this point I’ve come to the conclusion that TED’s are miraculous, wonderful things that I believe every person on earth should seize as a personal health discovery aid. So many people are probably unaware of food intolerances that manifest in symptoms that make them feel terrible and are hard to treat or fix; finding the cause in their diet would alleviate much of that discomfort and/or harm.
However, for Mama’s doing a TED for their FPIES or food allergic child, it gets a little trickier. I’ve heard of so many women who went on a TED for their child only to find their own health got WORSE. Women who were already healthy and fit lost a distressing amount of weight until they were malnourished and sickly. Women who suddenly had alarming health issues pop up once they changed their diet.
I believe I got very lucky with my TED.
Still, in the beginning I didn’t think I would be so lucky. I thought it was a certainty that I was absolutely wrecking my health completely in order to keep Zac alive…and I still jumped in to my TED 100%.
I would do the same today, even if the outcome had been different. My sons health was – and is – worth it to me.
Further, I would encourage any Mama with an FPIES child to pursue a TED. Mine has lasted a long time; in fact, while I’m not completely sure, I think it may be one of the longest breastfeeding TED’s in the FPIES world. (I know some who have done it longer, but it seems most manage to end their TED within 2 years.) So while two years of poor health is NOT a good thing, NOT advisable, and NOT recommended…if the alternative is your precious baby suffering intense pain, how could you not at least give it a try?
If it’s too much for a Mama’s body to handle, well, then she at least knows she gave it a good try. She at least knows she did the best she could for her baby by leaving no option unexplored. That’s motivation enough for me – and for most of the other FPIES TED mama’s I’ve spoken with!
While I think TED’s are a little known and potentially powerful diagnostic tool for the general population, I know FPIES TED’s are a different animal. For me, my TED for Zac turned into a TED for me, as well. Other FPIES mama’s aren’t in that situation.
Their TED is strictly for their child, and it may prove disastrous to their own health. I’ve said it before: Mama’s have to water their own roots so they can take care of their family properly.
It’s a terrible position to be in when you realize the TED that is helping your child is almost killing you. I have no great advice for the Mama’s in that situation, except to say that you have to do what is right for you and your child.
Usually the FPIES mama’s recommend a woman on a TED who is in such a position do formula trials for her child BEFORE she weans, simply because there are far too many examples of our ‘rare’ children reacting to even elemental formulas. Eliminating your child’s only safe nutrition before knowing you have a backup could prove disastrous in the long run.
Many of those trials do end up with safe formulas, which means a TED Mama can wean with the sure knowledge that she did every single thing in her power to keep her child healthy and alive.
For those unfortunate Mama’s whose formula trials end in reactions, well, there are still options. She can continue to nurse on her TED, knowing that her health is suffering but it IS temporary; by keeping her baby non-reactive, she can sooner discover safe foods that lessen the breastmilk dependence and speed up the time frame on weaning.
Some Mama’s have delved into the world of homemade formulas. I’ve heard of some made with hemp milk, and some that use liver as a base. There are options out there; though, having not used any of them myself I have no additional information about them.
In the end, after three years on a TED and three years in the world of FPIES, I still believe that TED’s are a worthwhile endeavor for FPIES Mama’s. Even if it proves unsuccessful, the knowledge that you tried carries a lot of weight.
Besides, whether successful or unsuccessful, any TED done for a nursing baby will be temporary. My three year TED is a long one, but it won’t last forever.
Yours won’t either.
Have you done a TED for your FPIES baby? How long did it last?