Gluten-Free Diet: Help! Where Do I Start?

I am frequently asked this question and earlier this week I promised a reader that I would blog about it in an effort to provide them with answers as they wade through the myriad of information on the gluten-free diet.  My first recommendation is to take a deep breath and breathe.  There are no easy answers if you are experiencing either health issues or behavioral/emotional issues or even depression, which may or may not be related to consuming gluten, dairy or other foods.  The intention of my cookbook, The Super Allergy Girl™ Allergy & Celiac Cookbook, was to help people with this very question.  I have included in my cookbook 100 pages of helpful information to people embarking on a gluten-free and dairy-free diet.  You will find many helpful downloadable and free documents on my website – information free for the taking.  For that reason, I will be as brief as possible here.  You can purchase the cookbook here on my website.

Where Do I Start?  This is a great question with no easy answers.  I will make some brief recommendations with the understanding that I have already written 100 pages of information in my cookbook to help people get started and be successful.  If you are considering the gluten-free and/or dairy-free diet for yourself or your child due to health symptoms, behavioral issues, emotional problems or cognitive functioning issues, good for you!
 

Step 1:  I recommend that you begin by seeing your primary care physician or pediatrician and ruling out celiac disease.  Celiac disease is currently one of the most under-diagnosed, if not the most under-diagnosed disease in the U.S.

About 97% of the people in the U.S. who have celiac disease don’t currently realize that they have it according to the University of Chicago Celiac Disease Program.  If celiac disease, which is an autoimmune disease with a genetic component, is the underlying cause or source of your health issues, it would be really, really good to know that, medically speaking.  Years down the road, you don’t want to be wondering if you or your child actually has celiac disease.  Because celiac has a genetic component, it would be valuable for you or your relatives to know if you or your child has celiac disease. 

The mistake I made, and it is the classic mistake that many others make, is to go on a gluten-free diet without ruling out celiac disease.  I have been informed by reputable individuals in a position to know, that if you are on a gluten-free diet for an extended period of time that you will invalidate celiac testing in the future.  My recommendation is to rule celiac disease out.  You can find good information on celiac disease testing on the Celiac Sprus Association, USA, Inc. website at www.csaceliacs.org, so I’m not going to go into celiac testing in this piece.

 Step 2:  After ruling out celiac disease, assuming you are agreeable to that recommendation, you can then select one of several options to try to assess what is contributing to your health issues, behavioral issues, cognitive functioning problems or emotional issues.  Here are some of the options you have:

Elimination Diet:  As the name implies, an elimination diet is one where you remove many or most common foods.  Once you have removed most foods, you then re-introduce foods to see if symptoms return or get worse.  This requires diligence and many people find it uncomfortable as the elimination diet offers few foods for consumption.  I have not found many parents willing to do an elimination diet, although if you are willing, this can be a helpful option.

Remove Gluten and/or Dairy from the diet:  In this option you remove either gluten or diary or both.  Gluten and diary are two of the foods that seem to impact many people, so I recommend if you are going to do this to remove both for a period of 6 weeks minimum with 3 months being a preferred period.  Gluten and diary remain in the human body longer than other foods, and if you don’t remove it for a long enough period, you won’t be getting a valid test.  If you are going to do this, by all means get a copy of my cookbook so you don’t have to suffer through it.  You can have outstanding gluten-free and dairy-free foods, so if you are going to try this option, give it a good go by getting resources so it is as easy as possible.  If the symptoms are improved or eliminated by being on a gluten-free and/or diary-free diet, you can then introduce gluten or dairy, one at a time, to see if they bring on the symptoms you are addressing.

Food Diary:  This is another investigative tool that is non-invasive.  It takes time, commitment and patience.  In this option, you write down what you eat, how much of each food and any symptoms, behaviors or emotional states in a journal.  Often by keeping a food diary, people can start to see patterns emerge and they can then make educated guesses as to what might be the source.  If you notice that you feel tired two hours after every meal, that might be helpful.  If you change what you eat and notice that you are energized, that would also be of value. 

Food colorings, additives & preservatives:  In some instances, individuals or parents will see improvements in emotional, cognitive, physical or behavioral functioning by simply removing food colorings, additives, and preservatives.  The rule of thumb here is if you can’t pronounce it, if you don’t know what it is or does, or it says coloring – it falls into this category.  The Feingold Association, www.feingold.org has a program to help parents and professionals in this area.  You can purchase their outstanding program or become a Feingold Association member through their website.  They are a very reputable organization, and I highly recommend their program, organization and website!

I’m Still Confused:  Where Do I start?  There simply is no easy answer to this question.  The important thing is just to begin somewhere.  You can start with any one of the options I have outlined above.  It depends on your personality, your situation, and your time and resources and what you are willing or unwilling to do.  When parents read the package inserts of some of the ADD or ADHD medications and see some of the serious and/or life-threatening side effects, many of them become willing to spend some time and energy investigating natural, non-invasive dietary changes.   It is unfortunate that there are no easy answers and no one-size-fits-all solutions when it comes to dietary intervention.  Two of my three children require the gluten-free, dairy-free and allergen-free diet for their cognitive processing, emotional well-being, and health.  Two of them are also highly reactive to food colorings and preservatives.  They don’t all react the same to the offending foods.  I wish I could make it easier.  What I have done with my cookbook is to put all the important information about special diets, ingredients, and the basics of what you really need to know in the first 100 pages.  There are over 225 outstanding recipes.  Just because you are on a limited or restricted diet doesn’t mean that you have to tolerate bad foods!  We have great tasting foods free of all gluten, dairy, eggs, tree-nuts, peanuts, and other allergens (Over 75% of the recipes are also free of soy and corn).

Will it affect people in our household who don’t have these issues?  If you are changing your diet because of celiac disease or to improve health issues, you will have control over how it affects the people in your household.  This is an area where not everyone does the same thing.  Some families cook two separate meals, one free of gluten and dairy and one meal that contains gluten.  I am unwilling to cook two different meals, and my children all have different food requirements.  My daughter has life-threatening food allergies to all diary, eggs, peanuts and tree nuts.  My one son will get a nice rash from eggs, but eggs won’t kill him.  I cook to the lowest common denominator, which means that the meals for my children are free of all gluten, diary, eggs, peanuts, tree nuts and coconut (the coconut is for me!).  You may be willing to make two meals as many families do that.  It will be a change for sure.  However what I can say with all honesty is that people do dietary changes because they see the results and it is safe. 

This is a very long blog, but it will make at least one reader very happy!!  Or maybe it won’t make her happy, but I at least kept my promise to answer her questions by today!!  Yikes, better get this published as it is 11:24 PM!!  I’d love to hear your comments and thoughts on this.  What results have you seen by changing your child’s diet?  What thoughts do you have to share with someone considering a change in diet to alleviate health symptoms, behaviors, emotional issues or cognitive processing?

Love,
Lisa

Comments

[manhattan allergist]

Oh, i thought you really want a help, you got me there. This is a really helpful site yours. It's good to know there are informative sites like this where people that has an allergy can turn on to. By the way, the steps in your diet is clear and really helpful.

-Keith

[Jennifer]

I removed milk from my own diet when my nursling was suffering from reflux. Her reflux improved and I felt fantastic. My life long excema vanished and I could think clearly, my mood swings evened out. I decided then and there to never go back. I tried soy to replace milk and all the symptoms came back in me and my daughter with a vengance so I eliminated soy also. My son then began to show signs of autism. I put him back on pumped breastmilk when I was avoiding milk and soy. His excema(much worse than mine)vanished also. He began to make eye contact again and actually focused enough to participate in an hour long therapy session. I then started reading about the gfcf diet for autism and took gluten away in addition to the milk and soy. He stopped head banging, spinning, flapping and was calmer. He was actually trying to communicate for the first time in years. I then noticed that hot dogs set him off and he was mean when he would eat hot dogs so I took away all cured meats, and the sweet boy I knew returned. I, then noticed that food coloring made him super hyper so we got rid of that too. We avoid hydrogenated oils, preservatives, MSG and artificial sweeteners for general well being. About a year ago I got Epstein-Barr and it knocked me for a loop. After that I began to exhibit signs of celiac disease and thyroid disease. I did have my doctor confirm hypothyroidism and eliminated gluten on my own without confirmation of celiac. I do feel somewhat better now that I am on thyroid medication and a diet free of the above offending foods. I have autism also and it really helps me in that area. My daughter is tube fed and I blend up real foods to put in her feeding tube. She doesn't tolerate milk, soy, corn, eggs and oranges. She didn't even tolerate Elecare formula, which the doctor said was our last hope. He was wrong, she tolerate real food just fine as long as it doesn't contain the above. She does fine with gluten, but not corn. My son does fine with corn, but not gluten. Makes grocery shopping quite interesting.

[buy soma online]

You ahve provided us the best option on our daily diet. This will be a cream of the crop for my family. Thanks again!

[Lynn]

This was very helpful to me. I love that your family avoids almost the same foods as mine (wheat, egg, milk, nuts, and sesame for us). I just posted about what our family eats on our new allergy blog yesterday with the goal of helping other families. It's not nearly as comprehensive or articulate as your post but I hoped it might help someone. Your book sounds like it would be very helpful to our family. (I fear I might have eliminated gluten before celiac testing might have helped me. I have had celiac-like symptoms my whole life, but eliminated wheat when nursing my wheat-allergic son. I feel fantastic, which could be nursing hormones or could be that I was reacting to wheat too!).