When Food is the Culprit

Food Allergy.

Food Intolerance.List of types of diets

Food Sensitivity.

No matter the label, it means everyone’s unhappy.

Your child’s unhappy because his body is always “talking back.” You are unhappy because your child is struggling. He might be telling you through his behavior. His body might be telling you through it’s reactions (hives, dry skin, gas, diarrhea, constipation, hair loss, and more). He might be feeling so unsettled that he chooses not to eat – but he can’t tell you why he’s not eating. He loses weight. He gains weight.  And on it goes.

The list of reactions, physical and behavioral, that can be due to a food allergy, intolerance, or sensitivity is endless and random.

What’s a parent to do?

Step One: Trust your gut. 

What I mean is parents know when something’s up.  I am a big fan of parents’ instincts when it comes to kids and health. Our son’s toughest experiences are prime examples of  times when Mother knows best.  

Step two:  Be plan-full in your approach.

Too often, when we, as parents, believe we know what’s up, we implement the solution before fully understanding the problem. What happens is an immediate issue may be solved, but more may be lurking in the background.  This is almost always true when it comes to food allergies, intolerances, and sensitivities.

When our son, who has Down syndrome, autism, and is nonverbal, had what we termed, “life-limiting diarrhrea” (though he scheduled it well – always between 10:00 and 11:00 in the morning), my research led me to lactose intolerance. I removed all lactose from his diet. Voila! The diarrhea was gone.

Then I read an article about emerging issues in Celiac Disease. Hmmmm.  I read, “Lactose intolerance may be a sign of early stages of Celiac Disease.” Great.  We had done a Celiac panel and it had come back negative. So I moved forward, haunted by this article. Two years later, the diarrhea was back. Sure enough, his Celiac panel had changed. We implemented a gluten-free diet, the appropriate treatment, and life has been great ever since.  I don’t know that we could have changed the course given the information available at the time, but we could have if it happened today!

The best approach is an evidence and practice-based, systematic approach. This can be a difficult thing to do without some support and coaching. Which leads me to…

Step three: Work with a qualified medical professional using a systematic approach.

This is especially true when tests come back “inconclusive.” So what does this mean? It means making a commitment to follow a well-documented approach to discovering food intolerances, sensitivities, and allergies. Not every blood test will reveal what you need to know, though most allergies will be easier to discover.

Food intolerances and sensitivities are more difficult. This is due, in part, to a growing scientific understanding of how our body demonstrates them. For example, a person who is gluten intolerant, rather than having a true allergy to gluten called,  Celiac Disease, will produce “inconclusive” tests when a Celiac panel is done. Yet your “Mommy Radar” is screaming that is the issue!

This is when it’s useful to work with a Registered Dietitian who has experience with an elimination diet. Elimination diets are tricky things.  To do it well and get the best results requires commitment. It takes time and planning. It also takes a lot of patience when dealing with your child. Working with a dietitian skilled in this area will help you survive the experience with more hair left on your head. It’s still a lot of work, but the dietitian can help guide you and your child through the process as quickly as possible.

The dietitian may or may not choose to use blood work to help define where to start when re-introducing foods. The science around those tests such as ALCAT (1) and LEAP’s MRT testing (2),  are in a grey area of acceptance. (3) Used in combination with an elimination diet protocol, however, they can be a useful tool in discovering what your child – or you – are most sensitive to.

I am on the fence about use of the blood work given the scientific controversy. However, the research curve for food intolerance – rather than allergy – is definitely increasing. I expect the landscape to change dramatically over the next five years.  Like many things, the blood tests are expensive and not typically covered by insurance. It doesn’t do any harm, other than the trauma of the blood draw and your bank account and it may provide some direction in the process of an elimination diet. In my opinion, these tests must be accompanied by the elimination diet to truly uncover your child’s puzzle.

The widely accepted gold standard remains a well-executed elimination diet and reintroduction of foods. It requires the partnership of a qualified health care professional, such as a registered dietitian, and someone who will coach you from beginning to end in a manner that is useful to you and your child. For parents of children with Down syndrome and related disabilities, this means working with an dietitian who understands your child’s “health personality” and is able to understand the difference between behavior that is communicating a reaction to food and behavior that is communicating a reaction to something else (a person, an environment, the need to make choices, and the list goes on).

You never know, you may find that your child has no negative effects to food. That’s a good thing!

Warmly,

Joan

Want to know more about doing an elimination diet? I’d be happy to talk with you to see if it’s something you are interested in working through with me for yourself or your child.
Click here to schedule a 30 minute “Get to Know You” conversation.

Footnotes:

  1. AlCAT Worldwide Cell Science Systems.  (Accessed 11/11/12)
  2. LEAP MRT Testing.(Accessed 11/11/12).
  3. Barrett, S. Allergies: Dubious Diagnosis and Treatment. (Accessed: 11/1//12)

 


							
Posted in Cooking, Disability-related, Food and Sensory Sensitivity, General, Gluten-free tales, Health, Health Litearcy | 2 Comments

November Non-Fiction Writing Challenge

Well.

I’m not at all sure I’m up to the challenge, but I’m in. November is NaNoWriMo (National  Novel Writing Month). A writing coach who works with people who write nonfiction (like me) has launched WNFIN (Write NonFiction in November). I decided that is the challenge to take on.

It’s hard to say if I’ll finish the project in the month of November (who in their right mind chose NOVEMBER with Thanksgiving and    – for those with children in Portland Public Schools – the (lack of ) school schedule??  Regardless, I’m using this to launch my desire to finish writing my book on weight management for people with IDD by the end of 2012.

I won’t be posting everything on my blog at www.JoanMedlenRD.com, given that I’m not sure how they’ll turn out. But I will post here. So if you want to comment on the process, insert your questions, share your stories, this is the place!

I do best when I know people are interested in the end result, so please participate!  I promise to make it worth your while.

Thanks for going along on the ride with me!

Warmly,

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Zip It Up!

connect-white

As parents, we spend years working toward our children moving out and living independently. Many live in apartments or town homes with a room mate. Some live alone. Others live with a group of people similar to college students – sharing space and splitting the bills, but taking care of their own cooking and shopping. Others still live in a group home setting. Even there, the shopping and menu planning can (and should) be something everyone’s involved with.

The real magic of all this is coordinating everyone involved! It is rare that an adult with Down syndrome or IDD does everything involved with food (planning, shopping, preparing, eating, cleaning) on their own.  That means there’s more than just Mom and Dad involved in the process.  For many, programs such as Dropbox, Google Docs, and iCloud have helped with this process. However that still means keeping track of a file that may need input and editing a number of times.

Is there an easier way?

I think there is!

I’ve recently started using a website (and it’s apps) to do coordinate people around the task.

With one website, I can work with someone to plan a menu around their preferences, include or create recipes, and create a master shopping list. I sync this with everyone involved. The list is then compared to items on hand and updated. Other nonfood items needed at the store are added to the list. The list automatically syncs for the entire team. The shopping team opens the app on their smart phone or iPad at the store, marking items as they are added to the cart. Then, when a menu is prepared, the cooking team brings up the menu, clicks on the recipe and a meal is made!

The real beauty is in the sync. Whether your “team” consists of one or 12 different people, when recipes, menus, and lists are updated, it updates for everyone. If someone forgets their smart phone, they can print the list off the website or log in with a different device!  It’s all ready to go.

The recipes are not customized for those who struggle with reading or who need more visual cues, so any modifications to that still need to be made. However, in many cases – whether I think it’s best practice or not – instructions are verbally given to someone  In this case, the app will do the job.

The best part?

It’s free.

I’m still working out the processes with my own team. I’ll fill you in as I go along!  If you don’t want to wait, head to the website and try it out:

ZipList

Here’s a link to my latest crockpot recipe: Pulled Pork  (I am not sure I can share this link this way, so let me know if you can’t get to it).

Enjoy!

joan sig

PS: Ziplist has a great feature to add recipes to your recipe box as well. You can keep your recipes private or share them with the world. It also allows you to “clip” recipes from websites with one click. I tell you, this thing is great.

Copyright © 2012 Joan Guthrie Medlen, MEd, RD

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Supplements – De Ja Vu?

Last year I wrote a blog post titled, “Does Learning Only Go in One Direction?” In it, I ask,

“Do the concepts we learn only go in one direction–from the general public to those with disabilities? Or can we learn important skills from people with disabilities and modify the concept to fit our lives, too (the reverse direction)?

When it comes to supplements, the disability community has been in the lead for more than a decade.

Recent articles about the risks of using vitamin supplements sounds so familiar. Using specialty supplements has been a constant in the disability community for decades. In fact, some of my best friendships in the disability community began because of discussions around supplements. That was before the laws regulating health-related claims. Those laws have been extremely helpful as far as I’m concerned. Yet even with those limitations, supplements continue to surge in popularity for everyone as a quick fix to better health.

The reports in the past week have highlighted that supplements are not the risk-free fix for poor eating habits or to prevent health problems. In fact, some are causing more harm than good!

Before I say much more, I do want to point out an important fact. As a science, nutrition is very young. We are still learning how vitamins, minerals, and other nutrition-related elements are used in our body. In fact, when I took my registration exam – just 24 years ago – Selenium and Zinc were so new their effect on our body was not clearly understood. Now we know they are essential minerals, that Zinc is useful in fighting off infections and Selenium has a role in memory among other things. So it’s not surprising that what we’re learning about the role of vitamins and minerals – and how much is too much – is changing.

In 2002, the recommended daily intake (RDI) of vitamins and minerals, the National Academy of Sciences added some very helpful information: an upper limit and signs of excess. Looking up everything you can get in a food is tedious – whether you do it with a program or by hand. But knowing the signs of excess, as well as the signs of deficiency, is a useful thing. Consuming too much of a vitamin or mineral is not limited to supplements or fortified foods. It can be done eating real food too. It’s something I consult when I suspect a child is getting too much “nutrition” in the combination of whole foods, fortified foods, and supplements.

I found it so important that people realize there are upper limits that can have negative effects, I chose to include those tables in my book, The Down Syndrome Nutrition Handbook: A Guide to Healthy Lifestyles (pages 12-21).

My Advice?

  • Keep it simple. Eat whole foods.
  • Encourage a variety of foods.
  • Go for the “crunch”! Choose fresh fruits and vegetables.
  • Plan your menus – it helps you manage time so you don’t need the supplements.
  • An over-the-counter multivitamin is appropriate for selective eaters. More is likely excessive.
  • When in doubt – choose food.

These are lessons learned more than a decade ago for me as I navigated life with my child who has multiple disability labels. If eating a variety of foods, or getting to the crunch of fresh foods is a challenge for your child, your family, or you, consider signing up for the Wellness Walk, my coaching series for creating quality health, quality lives, and a community vision.

 We can- and do – learn from each other. Learning goes both ways.


PS – Don’t forget! There’s a 20% discount on products and services until October 31!

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Does the Label Matter? “Dietitian” meets “Nutritionist”

I haven’t had this conversation for about 26 years.  For some reason, it’s coming up fairly regularly now, and I see it’s an important point to make.

I want to be L A B E L E D.

A Dietitian, that is.What is the difference between a dietitian and a nutritionist?

Why? Because you wonder, “What is the difference between a ‘Nutritionist’ and a ‘Dietitian?'”  No need to deny it. You know you do.

I know this because once we talked about it, almost every other health care professional in the room at the Down Syndrome Medical Interest Group Meeting in San Antonio said, “Oh…I’ve always wondered about that! Good to know!” These are some of the most respected names in health care for people with Down syndrome in the United States. And they didn’t know. So don’t feel bad.

Simply put, anyone can call themselves a “nutritionist.” But only some can call themselves a Dietitian.

Let’s compare the two.

Dietitian:
Dietitians are registered nationally, and licensed by their state in which they practice. To be registered, one must have at least a BS in Dietetics or Nutrition and complete an internship (or an approved alternative) following graduation. But wait, they’re not done yet! Once these criterion are met, a person is eligible to take the registration exam, administered by the Committee on Dietetic Registration. Once a person successfully passes this exam, they may call themselves a Registered Dietitian and place the letters. “R.D.” after their signature. Last, one can apply for a license to practice in each state they choose to practice medical nutrition therapy.

This rigorous training teaches the RD to work with you – in tandem with your health care team – to create a nutrition therapy plan that fits your lifestyle.

Nutritionist:
Anyone can call themselves a “nutritionist.” There are no education, ethical, or license-related standards to govern the use of the title. It’s not necessary, but you can obtain a type of certificate from any number of programs – available in magazines, over the internet, on television, and more – for some “training” in nutrition.

Some Dietitians have jobs with the title “Nutritionist.” For example, Dietitians working in the Women Infant and Child program (WIC) are called “Nutritionists,” but their job description requires they are a Registered Dietitian. All individuals working in accredited hospitals, regardless of the job title on the door, are Registered Dietitians.

What about “Coach”?
Another job title to take note of is one that has the word “coach” applied to it. There’s any number of combinations: wellness coach, nutrition coach, lifestyle coach, health coach, and so on. Although accrediting organizations do exist for coaches, there is no regulation on how the term can be used. In the end, anyone can call themselves a “coach.”

Don’t get me wrong. There are some amazing nutritionists and coaches. There are people who can’t meet the rigorous training or pass the registration exam, but have the educational background, for instance.

But there are some who are very scary too. And then, there are those who really just want your money. You may meet a Dietitian like this too. The difference? If you meet a Dietitian whose medical or ethical judgement  you question, you have a course of action.

Nutritionists are not held to ethical standards. There is no mechanism to complain and perhaps strip them of their credentials. If you have a complaint about the professional ethics of an RD, there is a mechanism to do this – just as with physicians.

For example, I make great tools to help people change their environment or develop skills that transform their environment to promote quality health, quality lives, in a connected community. I will coach you to that outcome whether you use my cookbooks or not. I will also sell you my tools without requiring you to participate in any of my programs. They are mutually exclusive.

The short answer is that a Registered Dietitian is someone who is highly trained, whose credentials are monitored, and who is required to complete relevant continuing education to keep their credentials.

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Walking the Walk….Eating the Choices

The most intense learning situations in my life have been in my role as Andy’s Mother. The most rewarding learning experiences come from working with Andy and others who are on this journey with us.

I can tell when people wonder if I actually do the things that I talk about in my own home. It’s a reasonable question, really. Andy, with all his uniqueness, is his own person. What we do is tailored to his success.

Tonight is a great example.

Earlier this year we took trips to our local New Seasons Market, with photos of cuts of meat and text for the specific order, and purchased different cuts of meat. Andy  now thinks the meat department is the best part of the store.

Andy decided that today he wanted to be in charge of our dinner menu. It caught Charli, Andy’s support provider, and me by surprise, but we grabbed a couple of the meat order cards and let him make a choice. He chose chicken kebobs.

Chiken kebob Meat Order request cardChuck Roast Request Card

Off we went to the store. Andy marched straight back to the meat counter, where we met Mason. There were a few people there, but Mason was ready for the next order. As Andy handed over his card, Mason grinned from ear-to-ear, saying “I love this!”

He then asked if he could show the card to his coworkers. They all smiled as they watched Andy waiting – not so patiently – for his kabobs. One person asked if I made these cards. I just smiled and said, “Yes.” (they take less than five minutes to make). They were only impressed for a moment. Andy drew the attention back to himself by peering over the counter to check on Mason’s progress.

Mason handed over our brown wrapped kebobs, and Andy took the package with great pride.

2009 © Phronesis Publishing

Off we went to pay.

As shown in Cooking by Color: Recipes for Independence, I use a broad guide for planning a balanced meal: if the meal has 3 of the 5 food groups, it is balanced. I always warn parents and  providers that this can lead to some odd menus.

Here’s how it went:

I offered Andy a choice of rice or noodles to go with his GF Teriyaki Kabobs. He chose Penne pasta.

Hmmm.

I tried again by offering rice noodles or Penne.

He chose Penne.

I offered a choice of tossed  salad or sauteed vegetables.

He chose sauteed vegetables.

So I chose to mix the vegetables in with the pasta – something I do often.

folowing the menu planning guide in Cooking by Color: Recipes for Independence

Menu

Chicken Kabob
Penne Pasta with sauteed Broccoli & Carrots
Milk.

Hmm.

He proudly – and I do mean proudly – ate every bite.

Walking the walk…eating the choices. It’s an adventure I wouldn’t trade for the world.

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A Blast from the Past: Creating Solutions – Disability Solutions

I am pleased to be able to offer electronic copies of Disability Solutions to visitors to my site. This work represents 10 years of investigation, learning, and collaboration with many talented professionals and parents. The articles, are provided here with the same mission as originally intended: To do good for, and with, people with Down syndrome and related disabilities. Many of the topics are timeless and some are one-of-a-kind!

The work related creating, editing, and publishing Disability Solutions was key to my growth as a professional and, more importantly, as a Mother. Every issue touched my family directly, and still do. I hope they will continue to inspire you as well.

You can access the back issues (as pdf files) here.

Many people put in hours of time, free-of-charge, to create these issues. If you are interested in reprinting any of the articles, please honor the following guidelines:

  • Do not change the article.
  • Cite the author fully.
  • Cite the source : reprinted from, Disability Solutions, Vx,Issue X. Accessed at http://www.DownSyndromeNutrition.com on (insert date of access).
  • You may not use any content in any issue of Disability Solutions for profit. That means, you may not reprint articles in a book or any other publication you plan to sell for profit.

If you have any questions, please do not hesitate to email me. (Joan@downsyndromenutrition.com This e-mail address is being protected from spambots. You need JavaScript enabled to view it )

Reprint Information for Disability Solutions

Disability Solutions was designed to be shared in the public domain, especially for families. If you would like to reprint or share material from Disability Solutions in a book, newsletter, electronic, or any other format for which you will receive any payment, permission is required.

When you do reprint material, please include the author’s name and list Disability Solutions as the source. Please send copy of the article reprinted or the URL of the web page where it is located. Please send requests for permission to the publication address.

Copyright Statement for reprints:

Please include the following when reprinting anything from Disability Solutions

” (Year) © Copyright Creating Solutions. This article is reprinted with permission from Disability Solutions Vol X, Issue X. For more information, visit http://www.DownSyndromeNutrition.com”;

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