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Lately I’ve been feeling like my leaky gut is an alien that’s taken over my body, like in one of those sci-fi movies my boys watched as kids. My leaky gut and all its accompanying symptoms control me physically and emotionally. My gut dictates my family life, my work life, my social life. It tells me where I can eat and what I can eat. It makes me tired and angry. It keeps me from traveling and doing the things I used to do. It makes my brain feel like mush and the wrong words come out of my mouth.
I wish I had an antidote to cure my leaky gut, so that I could return to the person I once was, the one who felt Super Human. Of course, back then, I didn’t know I felt Super Human. I did not appreciate my health, my energy, my memory, and my non-eczema skin because I didn’t know any different.
If I could go back in time, oh how I’d live my life differently. I wouldn’t starve myself in high school because I wanted to fit in 28-waist Levis. I wouldn’t have lived on lettuce and beer in college. As a young mom, I’d skip the processed convenient foods and focus more on the outer aisles of the grocery stores. I’d follow the advice of my sister-in-law, an osteopathic doctor, who touted organic and non-GMO foods way before it was cool.
In my thirties, I’d take probiotics when I took antibiotics along with prescribed painkillers for the first medical procedure . . . and the second . . . and the third. I wouldn’t have believed the first two doctors who diagnosed IBS; instead, I would have listened to that voice in my head that said something else was wrong. Nor would I have believed the next two doctors who diagnosed gall bladder disease and not celiac disease and food allergies. Yes, the cheese sticks made me sick but not because they were fatty! Because they were full of wheat and dairy!
When my father died, I would have taken long walks in the Vermont woods instead of drowning my sorrow in wine and Ben and Jerry’s. I would have believed that stress does impact your health.
But I can’t go back.
None of us can.
We can only go forward.
We can do all the things we should have been doing all along. We can continue educating ourselves about our leak guts and accompanying illnesses. We can stand up for ourselves at our doctors’ offices. We can listen to the voices in our heads when they tell us something isn’t quite right, or maybe I need another doctor’s opinion or test, or maybe the diet I’m following isn’t working.
Most importantly, we can support one another.
When you’re having a bad day, reach out to someone who understands; there are dozens of online support sources. Check out the websites, bloggers and nonprofit organizations who dedicate themselves to educating and supporting various autoimmune illnesses.
And when you’re feeling good–maybe not quite Super Human, but good nonetheless–help someone who is having a bad day.
It’ll make you feel even better.
After writing this post, I realized you could replace “Leaky Gut” with “Celiac Disease” or “Food Allergies” or “Multiple Chemical Sensitivities” or “Lupus” or “Lyme Disease” or an other autoimmune illness and the meaning of my words would be the same. Coincidentally, it happens to be “awareness week or month” for just about every autoimmune disease. So if you want to substitute “leaky gut” for the illness you have and share this post (with a link back to me), please feel free to do so.
I explained to the white-coated chef at the Marriott Residence Inn that I had celiac disease and a bunch of food allergies so I couldn’t eat the potatoes cooked in butter or the eggs or the yogurt or the cereal.
While I scooped fresh blueberries from the waffle station to top my Bakery on Main oatmeal, she circled me like paparazzi around Gwyneth Paltrow.
I knew what was coming.
“What are your symptoms?” she asked loud enough to make my husband cringe.
I looked around the room full of men and women in business attire and families with young children on school break and said softly, “Unpleasant ones.”
Now I have no problem talking about celiac disease and food allergies. After all, I spill my guts in this blog (pun intended). Of course, you may notice I hide behind a lemon in sunglasses.
But if I’m in public, I’d rather not talk about my bathroom habits. And I’m almost positive these people eating their bagels and cream cheese didn’t want to hear about my flatulence and IBS.
This gal was relentless. “How unpleasant?”
Really? You really want me to talk about my diarrhea and painful cramps before I’ve even had a cup of coffee? I glared at her. “I experience gastrointestinal issues.”
She got it. Finally.
Blushing, she said, “Oh, I just asked because I have eczema and people tell me maybe I should go off gluten.”
Why didn’t she just say that!
“Have you gone off gluten to see if it helps?”
“I probably should,” she said. “But I couldn’t possibly live without bread and pasta.”
Let me share another story.
We are at a restaurant and the waiter asks what kind of allergy I have: “Is it the kind that makes you run to the bathroom, or run to the hospital?”
I know what you’re thinking: I’m making this up. I wish!
I could have told this waiter–who happened to look like one of those bronzed guys with the abs of steel in middle-of-the-night infomercials–if I eat even a crop of the sauce with the cream, I will spend the next three days glued to the toilet seat. I could–and probably should–have told him it didn’t matter what kind of allergy I have–both symptoms are bad. If I continue to get sick from restaurants like his, I could get cancer.
Actually, I can’t remember what I said. I’m pretty sure I went to the bar and ordered a goblet of wine, and my husband ordered me a plain filet with olive oil, salt and pepper and steamed broccoli (my go-to-allergy-safe meal).
Now some people–I can think of several of my fellow bloggers–can easily speak out about their bathroom habits. Erica Dermer has a chapter in her book, Celiac and the Beast, titled “Let’s Talk About Butts: A Story of a Girl, Her Rectum, and the Scope That Loved Her.” Erica probably wasn’t raised by a mother who ordered “chicken chest” for dinner, as I was.
Ironically, Erica doesn’t have the nasty GI symptoms that many of us do. In the first line of her book, she says, “I wish I could tell you that if I ate a bowl of Pasta Roni right now, I would swiftly crap my pants. I only wish this because then you would plainly see that something is very, very wrong with my insides.”
Erica goes on to say that her symptoms appear days or weeks later–sores in her mouth, a swollen tongue, extreme tiredness. “I experience the same life post-gluten as every other celiac,” she writes.
While we all are in this together, our symptoms may be similar and different. Celiac disease has over 300 symptoms! 300! Throwing food allergies into the mix only complicates matters. Your autoimmune system reacts to proteins in foods differently from my autoimmune system.
So when a waiter, a chef, your spouse’s boss, or someone in the grocery store checkout line who sees you buying Udi’s gluten-free bread asks you what your symptoms are, feel free to share if you like. But I prefer telling them to go to one of these websites:
Fare has recently launched SafeFare, a resource center to make dining out safer
Make sure you print out NFCA’s Celiac Awareness Month 2014 Toolkit
* * *
May is Celiac Awareness Month, and Food Allergy Awareness Week starts May 11, 2014. Please share information about celiac disease and food allergies–especially symptoms so people will stop embarrassing An Allergic Foodie.
They are putting a cell tower in front of my house.
- Allergic to Life: An Interview with a Survivor of Toxic Mold (adventuresofanallergicfoodie.com)
- Allergic To Life: An Interview with a Survivor of Toxic Mold Part 2 (adventuresofanallergicfoodie.com)
- Cell towers and its health hazards in residential areas (hfkusa.wordpress.com)
Why Do Smells Make Some People Sick? Jan. 22, 2012 — Science Daily
Do you get a headache from the perfume of the lady next to you at the table? Do cleaning solutions at work make your nose itch? If you have symptoms prompted by everyday smells, it does not necessarily mean you are allergic but rather that you suffer from chemical intolerance. According to Linus Andersson at Umeå University, this hypersensitivity can be the result of an inability to get used to smells.
Normally your smell perceptions diminish rapidly, as when you enter a friend’s apartment. Even though you clearly notice smells just inside the door, you don’t think about them for long. For people with chemical intolerance, on the other hand, smells seem always to be present. Psychology researcher Linus Andersson has exposed both intolerant and non-intolerant individuals to smells and compared their reactions.
“The hypersensitive individuals felt that…
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This is Part 1 of an interview with the author of Allergic to Life: My Battle for Survival, Courage, and Hope. Part 2 appears tomorrow.
Having been allergic to mold since a child, I thought I knew something about mold’s impact on one’s health. Then I read Kathryn Chastain Treat’s recently released memoir, Allergic to Life: My Battle for Survival, Courage, and Hope.
Treat, an active wife and mother of two daughters, was exposed to toxic mold when she reentered the workforce at age 44. Suddenly, her life was turned upside down. She developed such life-threatening allergies to chemicals and food that she was forced to become a reluctant recluse, only leaving her home for medical treatment.
But Kathryn Chastain Treat is a survivor. After reading her incredible story, I couldn’t wait to ask her some questions.
Kathryn, you are one of the bravest people I’ve ever met! Thank you for sharing your story, which is really your family’s story. When you became so ill from multiple chemical sensitivities (MCS) and other health issues, you had to travel out of state for treatments. Your daughters were in high school and college then, and texting, Facebook, Skyping hadn’t been invented. How did you maintain relationships with them?
Amy, it was extremely difficult to maintain a relationship especially when I spent so much time miles away from them. Even when I was home, my younger daughter was a two-and-a-half-hour drive from me, and I couldn’t go into her apartment that she shared with others. I was fortunate that I had always had an extremely close relationship with my daughters. We tried to talk on the weekends when they weren’t in school and I was not in treatment. I sent many notes and letters to them through the mail. It would have been nice to have had access to a computer or if Skype and texting had been available to me. There were so many things I missed because they couldn’t share pictures—their latest haircuts, a fun find, a trip they’d gone on–and I couldn’t help my older daughter choose her wedding dress.
I bet your daughters will always treasure those notes and letters! Is there any concern that your daughters or grandchildren have a genetic predisposition to develop life-threatening allergies like yours?
It does scare me that my daughters might have the same genetic predisposition and be in the 25 percent of the population that can be made very sick from mold. My older daughter immediately can sense when she goes somewhere that may be moldy, and she leaves. Both daughters are more aware of the dangers of mold and the toxicity of chemicals. My older daughter has three children and tries to be as careful as possible with them; she uses fragrance-free laundry products, steams her tile floors with water only, and prepares most meals from scratch. My oldest granddaughter has a mold allergy so my daughter is careful about where she takes her.
To avoid exposure to chemicals that could cause you to go into anaphylactic shock, your husband built you a safe house–he sounds like a great guy!–and you two lived separately. Later, he moved into your house. What was that like, living separately and then sharing a house?
Living apart for seven years was extremely difficult. Part of that time I was out of state and the rest of the time in a house close by. When my husband had a heart attack, he moved in with me so I could care for him. It forced him to give up his belongings, including his vehicle because of possible exposure to mold or chemicals. Now when he goes out, he must change clothes in the garage and then immediately wash his clothes.
When my husband moved back in with me, we’d been used to living alone and we both had our own way of doing things—it’s still a challenge! It’s like two individuals marrying later in life and suddenly thrust into a relationship where they must give up some of their idiosyncrasies.
How often are you able to leave your home now? I’m curious what your average day is like.
After years of treatment and keeping myself isolated, I am now able to venture into a store for short periods if I wear a charcoal mask. I try to go when the stores are less crowded. If I stay too long, my brain becomes foggy and my chest starts to tighten up. There is a fine balance of how often I can do this or how long I can be out.
My daily routine is so much different from the beginning of my illness. Most days I get up, shower, dress, eat breakfast, then check my emails and take care of business. I separate my supplements out for the day and then figure out what I have energy for doing around the house. Cleaning house now is done in segments throughout the day and throughout the week. I am a list-maker. There is always more on the list than what I can physically or mentally accomplish.
My previous routine was much more time-consuming. Not only did I have to sort out my supplements, but they had to be done by day on the 4-day rotation I was on because some were food based. I took daily antigen injections and those had to be given in 4-day rotations. My food was also eaten in 4-day rotations so I had to figure out my meals based on what day of the rotation I was on. Then I did sauna therapy every single day (40 minutes) and oxygen therapy (2 hours). My day was done before I did any housework or got on the computer.
I know all about the dreaded 4-day rotation diet of food and supplements, but adding the injections, oxygen and sauna must have been grueling! Thank you for giving us a glimpse into what life is like for you.
Tomorrow, Kathryn will share more information on multiple chemical sensitivities and what we as a society can do to help.
For a signed copy (US Only) of Allergic to Life, click here.