Follow Your Gut: What's eating my daughter's stomach? (Part 1)

A Mother's Intuition

Ever heard of “mother’s intuition?”  It is that tiny voice in a mom’s head that says “hmm…something is not quite as it seems.”   That voice was what drove my friend  Emily to forgo her pediatrician’s relaxed approach to her young daughter’s stomach pains and embark on journey directed by her mother’s intuition.   Over coffee  at our local java stop, Emily described the events of the past two years to me.

Emily’s daughter, Nicky, who is now 6, began having constipation and separate periods of stomach pain at age 4.  She  was also having difficulty maintaining attention for age appropriate tasks, causing her  parents to discuss attention deficit disorder with their pediatrician.  While the physician leaned more toward treating the symptoms of the gastrointestinal (GI) issues, Emily asked herself why her daughter was in such agony.  What was causing this?  Because Nicky’s paternal grandmother had a history of stomach ailments and found relief via a gluten-free diet, Nicky’s parents suspected a gluten intolerance.  They took her off gluten in January 2011, and within 2 week the stomach aches and constipation went away.   Interestingly, so did her difficulties with attention and her tendency to be impulsive, which is a hallmark for children with ADD.

Over time, Emily did not worry about cross contamination or the occasional gluten-filled cookie.  Her daughter typically preferred to eat gluten-free foods, eating “lots of fruits and veggies, minimally processed foods” and only rarely,  a food with gluten.   By August 2011, Nicky had returned to daily tummy pains and the discomfort of chronic constipation.   Kindergarten had started, and at first, Emily suspected the culprit to be the stress that such a big transition can cause for a child.  But, by the start of 2012, mother’s intuition was shouting “Do something about this!” 

Time to Act

First stop: allergy testing.  A blood test for celiac, not always foolproof, came back negative.  Additional blood tests and scratch tests for food allergies were negative, but further testing revealed that Nicky had the permissive gene marker for celiac.  Consequently, Emily’s next step was to take Nicky to a pediatric gastroenterologist, who ordered a series of tests to rule out a multitude of causes for Nicky’s pain, including stool testing for parasites, an ultrasound of her liver and pancreas and tests for gastroesophageal reflux disease (GERD).   Again, all tests came back negative, leading Emily and her husband to consider taking one more step: an upper GI endoscopy involving anesthesia and a small bowel biopsy.

“What went through your mind when you considered this next step?” I asked my friend.  Emily gazed into her coffee, taking herself back to that moment.  “The risks of anesthesia.  I had the choice to do it or not to do it and that felt very heavy.  Ultimately, we decided to do it because it was important that we knew  for sure if we needed to avoid cross contamination or food temptations.”   Emily’s anguish over Nicky being 100% gluten free for life was clear.  “Mel, I mourned the loss of gluten.  I truly mourned it.”

Join us for Part 2 of “Follow Your Gut.”

In Part 2 of this article,  Emily is instructed to do a “gluten challenge”,  feeding Nicky plenty of gluten for the next 8 weeks prior to the endoscopy to ensure that the biopsy results would be accurate.   While she mourned the loss of gluten, the flood of gluten over the next 2 months proved to be the most challenging aspect of this journey, as little Nicky’s symptoms became almost unbearable for a mother to watch.

 For more information visit:  How to Get Tested for Celiac Disease.

About Melanie

Melanie Potock, MA, CCC-SLPMelanie is speech language pathologist who specializes in feeding.  Her work brings her into the homes and schools of her clients, kids, who for various reasons have difficulty with food or with eating. She works with kids and their parents to develop effective strategies that help children become “more adventurous eaters”.  At least 50% of her clients have food allergies or intolerances, and for them, “adventurous eating” takes on a special meaning.  Melanie is also the author of Happy Mealtimes with Happy Kids” and the executive producer of “Dancing in the Kitchen.”

More Posts from Melanie

Read PART 2:  Going through a Celiac Biopsy

Why Children with Autism are Often Picky Eaters

Review:  The Magic of the BellyFull Kit (From the Hopeful Company)

How Can Parents Feel Less Stress with a Food Allergic Child in School?

REVIEW: Make Me Over Gluten-Free! (Mineral Fusion Make Up)

 

As seen in Women's Lifestyle Magazine's May, 2012 edition.  Photographs by Daniel E. Johnson of Wealthy Street Photography.

Believe it or not, I'm quite camera shy (really).  In this snap happy world of social media, and with my obligations as a blogger for The Tender Palate and writer for Women’s Lifestyle Magazine, my graciousness in front of the camera leaves a lot to be desired.  It’s rather unsettling to emerge from my somewhat secluded life and “let” perfect strangers document my secrets as they emerge on the map of my face, the turn of my posture, and through the self-conscious gates of my eyes.  Internally, I’m very comfortable with who I am.  But when the vacant lens of modern technology curves ominously toward me, I become the awkward stranger who can’t do anything right.

So for this article, I decided to buck up, accept my insecurities and flaws, and just get over it – right in front of you.  

Thanks to photographer, Daniel Johnson (of Wealthy Street Photography), and makeup artist and Women’s Lifestyle Magazine beauty columnist, Marianne Bockheim, I was able to repair my relationship with that dreaded device called “the camera” and get some tips on how to look better in front of it.   They both helped me feel incredibly comfortable.  Marianne worked her magic on my face with gluten-free makeover using Mineral Fusion ™, “Minerals on a Mission ™” make up.  She also offered some great advice on how to use these wonderful products.    

Mineral Fusion Makeup. Photo by Daniel E. Johnson, Wealthy Street Photography

I Chose Mineral Fusion™ for Three Reasons:

1.    It’s gluten-free status.  

“...all of our products are gluten free. However, no, our facilities are not certified as gluten free. We know our products are gluten free because we perform testing on our finished products. Those results have always resulted in undetectable levels of gluten, which indicates there is no cross-contamination occurring at our facility.  Moreover, our equipment is thoroughly cleaned between product runs, as required by the US FDA.”
~Tim Schaeffer, Mineral Fusion’s SVP of Marketing

Please visit www.mineralfusion.com for specific ingredient and processing information.

2.    Mineral Fusion has a low toxicity rating in the Skin Deep database from the Environmental Working Group (www.ewg.org/skindeep). 

3.    The products work.  They work well and are locally available.

FACE PRIMER & CONCEALER DUO

COLOR:  NEUTRAL

Primer & ConcealeMarianne began with my naked face and applied the Face Primer.  This clear gel creates a smooth canvas for the foundation.  Use the lighter half of the Concealer Duo to cover up any discoloration, and the darker Concealer in the center of under eye puffiness to help “flatten” the puffy curve.  Use a thin application of the Concealer on the eyelid from lash to brow to prepare for the eye color.

PRESSED POWDER FOUNDATION & BLUSH

COLORS:  NEUTRAL 2 FOUNDATION; "TRACE" BLUSH

FoundatioUsing a chubby brush swirl the Pressed Powder Foundation over the entire face.  This evens out your skin, and sets the Concealer.

Then, with a brush, sweep the blush along the cheekbones from ear to apple to define.  Since the apples of most cheeks already contain color, you may not need to apply much blush (or any) to this area.

EYE PENCIL

COLOR:  COAL

Before using the liner, apply the lightest neutral eye shadow from lash to brow.  Apply the liner to the top lid starting from the outside corner of your eye.  Move inward with short, choppy strokes along the lash line.  This makes it easier to control how thick or thin your eyeliner is.  Buff the line with a brush to soften.  Use the same choppy eyeliner strokes (outside to inside) on the bottom lid, too, stopping about 1/3 of the way across the lid.  Using a brush, add a little copper eye shadow over the eyeliner to create a softer, different look.

EYE SHADOW

COLOR TRIOS:  “DIVERSITY” & “ STUNNING”

Marianne used two medium toned eye colors directly on the lid (pink on the inside and copper on the highest point of the lid).  She swirled the darker brown around the outside “V” of the eyelid itself.  With a good brush you don’t need to work too hard at blending.  It just happens.

LENGTHENING MASCARA

COLOR:  GRAPHITE

Take one swipe on top of the lashes (root to tips).  Then place the brush under the lashes, push at the lash base, and then wiggle the brush through the lash tips.  This is a great way to reinforce the eyeliner, or even give you the illusion of eyeliner if you choose not to wear it.

LIPSTICK & GLOSS

COLOR:  GEM

Outline the lips with a lip pencil or with a brush using the lipstick itself.  Then fill in your lips with the lipstick.  We used a little lanolin (my personal trick) to the lips to add a lasting shine.

HOW DID WE LIKE THE MINERAL FUSION?

Review first seen in Women's Lifestyle Magazine, May 2012, p. 30I wore the makeup for several hours after our session (I worked into the wee hours of the night) and it has some serious staying power.  The only thing that smudged subtly was the mascara, and it wiped right off without disturbing the rest of my face.  The colors are beautiful, and I am incredibly happy with how my skin looks and feels while wearing it.  It feels good and natural.  Just the way I like it.

Here’s what the expert had to say:

 “I really love the pigment and blendability of the Mineral Fusions make up.  Traditionally, mineral makeup wasn’t known for holding color.  But advances in technology have helped change that.  Mineral Fusion has a wonderful intensity of color and I love it’s luster.  The colors are really user friendly, it isn’t difficult to figure out how to apply it.  You have a great deal of control.  Even the most challenged of skin can wear this make up well. “  

~Marianne Bockheim, www.intelligentbeautysolutions.com

THE IMPORTANCE OF GLUTEN-FREE MAKEUP

According to a recent study (published in October, 2011), gluten (derived from wheat, barley and other grains) in cosmetics, shampoos and skincare products can pose a threat to people with wheat allergies and celiac disease.  Gluten particles are thought too big to be absorbed through the skin, but people may accidentally ingest small quantities of lotion, lipstick, or other products if they have the product on their hands or use it around their mouth. People with celiac disease and wheat allergies (IgE reactions in particular) can also react to topical application, and ingredients can be hidden.  Vitamin E, for instance is often derived from wheat.  The study cited one woman who started using a new lotion, then developed an itchy, blistering rash on her arms, as well as abdominal bloating and diarrhea - all of which disappeared once she stopped using the lotion.

I was excited to find Mineral Fusion Cosmetics and hope you will be, too!

ABOUT ELISABETH VELTMAN

Pictured with Makeup Artist, Marianne Bockheim (left)Writer, owner of Blue Pearl Strategies, and lover of all culinary delights, Elisabeth is a Tender Foodie. She started The Tender Palate, a website for foodies with food allergies where she consults with experts from every area of the Tender Foodie life. She believes that everyone should live deliciously and have a healthy seat at the table. Find her at www.tenderpalate.com.  (Pictured with Marianne Bockheim)

Golf Pro Michelle Wie Goes Gluten-free

Wie Inspired by Djokovic

Last Thursday, Michelle Wie, the U.S. golf champion and phemo, announced to the Tapei Times that she has gone gluten-free.  Her choice was inspired by Tennis Champ, Novak Djokovic.  In March, Djokovic announced that a gluten free diet was a key reason that his tennis game has improved so dramatically over the course of that season. 

The Tapei Times quoted Wie:

“I am allergic to everything in this world, I don’t really digest food very well . . . so I just thought maybe if I cut out gluten, I can feel better because I heard that it causes inflammation, everything ... but it’s been week three and I feel a big difference.”

Wei began her career at 16 and is currently going to Stanford.  She mentioned that she has no trouble balancing her class load at Stanford with her golf career. 

“You know, my joints don’t feel sore as much, I digest food a lot better, my hands feel less swollen so I feel really good,” she said.

 The Wall Street Journal wrote about Djokovic's rise from January 2011 to May 2011:

Djokovic's season has gone from good to great to outrageously, impossibly, unrealistically phenomenal.

Recent Studies Conducted Because of Gluten-based Illnesses

This is further evidence that supports Dr. Alessio Fasano's findings that no human being can properly digest gluten. The Tender Palate interviewed Dr. Fasano in December to help the general public become aware of and better understand his resarch.

Gliadin is a strange protein that our enzymes can’t break down from the amino acids (glutamine and proline) into elements small enough for us to digest.  Our enzymes can only break down the gliadin into peptides.  Peptides are too large to be absorbed properly through the small intestine. 

 As with Djokovic, It will be interesting to watch Michelle Wie throughout this year's performance.  It will also be interesting to see how the medical, research, marketing and farming industries behave as more celebrities and athletes adopt this diet. 

Read the articles and interviews with Dr. Fasano

Interview w/ Dr. Alessio Fasano (Part 1):  Should No One Eat Gluten?

Interview w/ Dr. Alessio Fasano (Part 2):  How to Get Tested for Celiac Disease

Interview w/ Dr. Alessio Fasano (Part 3):  Gluten Sensitivity, A New Food Allergy

Interview w/ Dr. Alessio Fasano Part 3: Gluten Sensitivity (a new "food allergy")

Let's Review

THERE ARE 3 FORMS OF GLUTEN-BASED REACTIONS:   Celiac Disease, Gluten Sensitivity, and a Gluten/Wheat Allergy.  There are four different types of wheat allergy -- and each type behaves differently.

In Part 1 of this interview series, I was most privileged to speak with Dr. Fasano about gluten, our bodies’ response(s) to it, wheat allergies, and why so many people today have problems with wheat (plus rye, barley, spelt, triticale, etc.) and gluten-based products.  I learned a surprising fact:  no one can properly digest gluten. Read more...

In Part 2, we discussed testing for celiac disease.  Celiac Disease is a severe auto-immune disease triggered by the gluten protein.  Dr. Fasano and his team put together information on how to get tested for celiac disease.     According to Dr. Fasano the latest research shows that you need to have 4 out of the first 5 of the following markers in order to be diagnosed with Celiac Disease.  Read how to get tested...

Gluten Sensitivity - The New Kid on the Block

In this post, Part 3, Dr. Fasano's team answered questions about what Dr. Fasano calls "the new kid on the block", or... gluten sensitivity.  My thanks to Dr. Fasano and his team at the Center For Celiac Research.

TF: What is gluten sensitivity?

Dr. Fasano: As the word “sensitive” suggests, gluten sensitivity is a reaction to ingesting gluten, which is found in wheat, barley and rye. Symptoms can arise throughout the body and range from fatigue and “foggy mind” to diarrhea, depression and joint pain (see more on symptoms below).


TF: How does gluten sensitivity differ from celiac disease?

Dr. Fasano:  Although symptoms (particularly gastrointestinal) are often similar to those of celiac disease, the overall clinical picture is less severe. Recent research at the University of Maryland Center for Celiac Research shows that gluten sensitivity is a different clinical entity that does not result in the intestinal inflammation that leads to a flattening of the villi of the small intestine that characterizes celiac disease. The development of tissue transglutaminase (tTG) autoantibodies, used to diagnose celiac disease, is not present in gluten sensitivity.

A different immune mechanism, the innate immune response, comes into play in reactions of gluten sensitivity, as opposed to the long-term adaptive immune response that arises in celiac disease. Researchers believe that gluten sensitive reactions do not engender the same long-term damage to the intestine that untreated celiac disease can cause.


TF:  What are the symptoms of gluten sensitivity?

Dr. Fasano:  Just as in celiac disease, gluten sensitivity can affect all body systems and generate a wide variety of symptoms. Gastrointestinal symptoms can include diarrhea, bloating, cramping, abdominal pain and constipation. Behavioral symptoms can include “foggy mind,” depression and ADHD-like behavior. Other symptoms include anemia, joint pain, osteoporosis, and leg numbness.


TF: How many people does gluten sensitivity affect?

Dr. Fasano:  Research from the University of Maryland Center for Celiac Research indicates that it affects approximately 18 million people, or six percent of the population.


TF:  How can I tell if I have gluten sensitivity and what should I do?

Dr. Fasano: This is something to discuss with your family physician or health care provider. If celiac disease and other conditions have been ruled out, i.e., irritable bowel syndrome and other forms of intestinal inflammation, talk to your doctor and dietitian about a gluten-free diet. Please do not undertake the gluten-free diet as treatment without the supervision of health care professionals as nutritional considerations as well as health considerations must be taken into account with this treatment.


TF:  Do I still need to be tested for celiac disease if I think I’m gluten sensitive?

Dr. Fasano:  Yes. You need to be tested for celiac disease to rule out the possibility of long-term complications. Accordingly, do not go on a gluten-free diet until the possibility of celiac disease has been eliminated through testing. If you go on a gluten-free diet and are then tested for celiac disease, the tests could be falsely negative due to the lack of autoantibodies in your blood serum.

Read how to get tested for celiac disease here.


TF:  Is there a test for gluten sensitivity?

Dr. Fasano:  Although researchers at the CFCR are working to develop tests for gluten sensitivity, currently there are no definitive blood tests for the condition.


TF:  Is there a cure for gluten sensitivity?

Dr. Fasano:  Just as in celiac disease, there is no cure for gluten sensitivity. The only treatment currently available is the gluten-free diet.

Other Articles on Gluten-based Reactions

Interview w/ Dr. Alessio Fasano Part 1:  Should Anyone Eat Gluten?

Interview w/ Dr. Alessio Fasano Part 2:  How to Get Tested for Celiac Disease.

About Dr. Fasano & the Center For Celiac Research

Alessio Fasano, M.D., is the director of the University of Maryland Center for Celiac Research, professor of pediatrics, medicine and physiology at the University of Maryland School of Medicine and director of the Mucosal Biology Research Center at the University of Maryland School of Medicine.  Dr. Fasano is an expert on gluten/wheat allergies and celiac disease.  In 2011, he led the research team who discovered a new immune reaction called "gluten sensitivity".

University of Maryland Center for Celiac Research is an institution engaged in clinical care, diagnostic support, education, and clinical and basic science research in Celiac Disease.

The paramount goal of the Center for Celiac Research is to increase the awareness of Celiac Disease in order to provide better care, better quality of life, and more adequate support for the Celiac Disease community.  To view the CFCR's brochure, CLICK HERE.

Aimee's Story: Second Thoughts About Thanksgiving.

Welcome to Aimee B. Smith, our new guest blogger and parent of a food allergic child.  This post is part of a series about dealing with food allergies in social situations -- this series will discuss handling Thanksgiving.  

Upon Arrival

From the moment I step out of our car on-to the snow-packed drive of my aunt’s house, my nose catches a whiff of the delicious aromas of roasted turkey, baked stuffing and homemade pumpkin pies.  The smell takes my mind and taste buds back, evoking all the warmth and nostalgia of Thanksgiving. But before my belly has a chance to rumble with the anticipation of gorging on the holiday spread, a sharp pain stabs my gut. Anxiety overtakes me: Will we be met with sly glances or unpleasant teasing again?  Will my daughter’s food intolerances consume the dinner table discussion? Will I be slammed repeatedly from every direction with questions like, “I forget, what gluten is exactly?” and, “Now tell me again, why can’t she eat this?” The knot wrenching my stomach tightens. Am I prepared to handle the slew of well-meaning but perpetually clueless references of, “I don’t understand…” and “Don’t worry so much, a little won’t hurt her.”?

Second Thoughts

I am having second thoughts about being here. Maybe our family’s dietary baggage is too great a burden to others.   Should we even have come to this dinner? This is as bad as, maybe worse than taking Raina to her friend’s pizza party or attending a neighborhood picnic. I’m scared for her safety, afraid she may ingest the wrong foods.  But it’s not just the allergens, disguised in mouthwatering dishes and desserts that I fear. My concern goes deeper –what if my daughter feels like an outcast, or that she feels somehow less of a person because she can’t eat what others are indulging in? 

Giving Thanks

My eyes turn to find Raina. She’s skipping up to the steps with glee. My Uncle Bob opens the door as full of high spirits as my little, bouncing girl. My aunts push him aside and run out with open arms and wide, glowing smiles to welcome and hug Raina tightly. I relax for a minute; my fears are subdued watching everyone’s joy. 

I remember the lessons that Melanie Potock, Raina’s feeding therapist, taught us: Eating should be enjoyable and relaxed.  It’s as much about the act of sitting down and enjoying each other as it is the food.  We aren’t here just for the food. 

I take a deep breath, allowing myself a break for just that instance from the overbearing stress I put on myself to manage these sorts of situations. As I let out a deep sigh, I remind myself of the pressure I place on myself to ensure Raina’s safety and that I’m doing a great job.

As I waddle up to the steps, laden with bags of my own allergen free pumpkin pie, gluten/egg/dairy free, green chili cornbread and homemade gravy I think perhaps this year can be better. I inwardly repeat my daily mantra, “It’s getting easier each day.  It’s getting easier each day…”  

Aunt Margie jolts over to grab a bag and, peaking in, says, “Oooh, look as these goodies! Your cousin, Lizzie, will be so happy. She’s on some crazy diet, off the dairy and gluten as well.” 

“Really!” I reply in shock then burst out a big smile, eager to greet my cousin, our new comrade on our allergen-free team. 

While I can’t always have faith that my family or friends will understand Raina’s needs or bend over backwards to accommodate her, I can hope that each year will improve as we all grow. I’m certain Raina will someday grow to be her own advocate and we, as a family, will find improved ways to cope with our stresses. Now that, is something to be thankful for!

About Aimee

Aimee B. Smith is a mother to four year old Raina, her miracle girl who was born a micro preemie at 24 weeks gestation. Aimee and her family embarked on an allergy-friendly journey after discovering Raina suffered from multiple food intolerances. The process has opened up a whole new adventure of cooking, shopping, dining and socializing for her and her husband. She is an avid writer, who finds inspiration for her art through her strong spirited daughter and the challenges and triumphs of motherhood.