The Alternatives- Diet and Nutrition, Part 1

 

*Since this is a politically charged topic, I have included many hyperlinks throughout the text that refer to original articles and scientific support for the statements that are made. Please take a moment to review the primary research for yourself! The links will open in a new window, so you won’t lose your place.  Always speak with you doctor prior to making any changes in your child’s treatment plan.

 

A few months back, the New York Times ran an article that sparked a great debate, especially in the juvenile arthritis community. The article entitled  “The boy with a thorn in his joints” (NY Times magazine, February 3, 2013) started rather innocently, walking the reader through the early stages of detection and diagnosis of juvenile arthritis in their young son. It is a story that many of us could relate to as parents searching for answers, trying to figure out what to do next, and feeling just a little fearful of the ramifications of choices made for our children.

 

The rest of the article however, deeply divided readers. Although the author went on to include valuable information on diet and nutrition, the presentation felt one sided, almost from an anti-medical perspective. While many applauded the efforts to bring diet, nutrition and alternative treatments to the mainstream, others were concerned, even angry, at the implication that juvenile arthritis was a disease that could be “cured” by a few herbs and dietary changes.

 

Although some children may find that alterations in their diet ARE very helpful, others may not see the same types of results. It is imperative to consult a doctor before making any dietary changes for a number of reasons. Trading pharmaceutical therapies for homeopathy and/or diet based changes without traditional medications can have serious consequences, including acceleration of disease, crippling joint damage, blindness or even death.

A concerning as this is, it doesn’t mean that there isn’t a place for the types of treatments described in the article. It does mean they should be considered in conjunction with traditional treatments, under a physician’s watchful eye.  In some cases, dietary changes are a part of traditional treatments. Take Celiac’s disease, for example. For children with this autoimmune condition (where the body’s immune system is triggered by gluten consumption) elimination of all gluten will allow the gut to heal, and symptoms (including JA type joint pain) to subside over time. However, the gluten free diet has become a popular parent- diagnosed change, even without a celiac’s diagnosis, or the doctor’s blessing. In some cases this can cause more harm than good!  Not only can the complete elimination of certain foods or food groups result in a nutritional deficiency, but “replacement “ foods, like processed gluten free baked goods, often contain less healthy ingredients to improve taste or texture. In addition, the some of the gluten substitute ingredients can even be harmful to certain people. If the child has a G6PD deficiency, the bean flours used in many gluten free breads and baked goods can actually make them sicker!  This is why it is critical to consult your child’s doctor BEFORE making any drastic changes.

Including the doctor in the development of your child’s nutritional program is also important because he/she can inform you regarding potential food to drug interactions (like grapefruit reducing the efficacy of cyclosporine) or the need to increase certain foods (dairy with prednisone,  or foods with folic acid in conjunction with methotrexate) when taking certain medications.

So what can a parent safely do on their own? Every doctor would agree, as simple as is sounds, a adopting a healthy diet is key, but often overlooked. Healthy eating is not a “diet” per se, but a lifestyle change that promotes consumption of food for good health (not just for taste or convenience.) Eating healthy means consuming fewer processed foods, reducing amounts of salt and refined sugars while increasing consumption of nutrient dense foods. The Standard American Diet (also known as SAD) is the exact opposite, high in processed foods, refined sugars and sodium. Even “healthy “ foods may have hidden ingredients, for example chicken breasts from the meat counter are often injected with a sodium solution (some even containing gluten) for enhanced flavor! With new research pointing to links between processed foods, high sodium and autoimmune disease, it is definitely something that should not be overlooked.

Improving your family’s diet may be met with some resistance, but the benefits are worth it. For the same reasons that you would put premium fuel in your car, you should consider “premium” fuel for your body! Here are some tips to get you started:

1)    Buy “real” food- if you can’t pronounce the ingredients, look for another option, or at least one that has fewer “offending” ingredients. If your Grandmother wouldn’t recognize it, it’s probably not a real food. (for a primer on real food visit here )

2)    Eat a wide variety of foods.  We all have our favorites, but eating a wide variety of foods helps to ensure the body will get a good mix of vitamins, minerals and nutrients for optimal performance. It stands to reason that giving your body the “fuel” it needs for optimal performance will help prepare it for the challenges it will face fighting any disease!

3)    Exercise moderation- too much of a good thing is bad, even with “healthy” foods (remember #2? We need variety!) Strive for a balance, even with sweets. If the eating plan you adopt is too restrictive, it will be difficult to maintain.

4)    Go slow. Don’t change everything in a day, or even a week. Build in healthier choices gradually, and get rid of the unhealthy choices a little bit at a time. It doesn’t mean that you have to throw out everything in your pantry, but choose to buy better foods on your next grocery run. Phase out the bad foods, or only allow them occasionally when you are out. Not having the temptation in your home can make a world of difference! Our example is soda. Although we know its bad for us, I do allow it when we are out to eat, especially with other families. It helps reduce the amout of soda we drink, and it makes my kids feel just as “normal” as their friends, even though we dont keep it in our home.

5)    Splurge every now and again. This way your kids and your family won’t feel denied. The results might even surprise you! One of my kids begged for circus peanuts (you know those really icky, super sweet orange marshmallow things?) Finally, I gave in. It was his choice for the once a week, no–holds-barred treat that I allow in our home. He ate one. We had been eating so clean for so long that he couldn’t even stomach it. It tasted awful to him! No more begging for circus peanuts, and no thinking I was the meanie mommie! When you don’t feel denied, its also easier to stick to a good eating plan.

6)    Set goals to help your progress. For us, we started with eating some kind of  salad with at least one meal a day, and then moved on to adding fish to at least two meals a week.  When these became habits, we added another healthy goal, like subbing fruit for dessert once a week. You get the idea.

7)    Include your family in the choices.  They are much more likely to eat it if they have some say…take a vote, “salad or mixed veggies at dinner tonight?” “strawberry or blueberry smoothie for breakfast?” Older kids can help with the meal planning or shopping for less dissention. We also have the two-bite rule in our house- if you try two bites and absolutely hate it, you can get a pass. Eventually we have found that our kids develop a taste for foods if they aren’t pushed as hard, but are encouraged to try.

8)    If all else fails, hide it. For some strong food dislikes, we have found that masking the flavor in other things that my family does like, helps sneak in the “offending” foods. Berry smoothies can hide a handful of raw spinach (its true!) and spaghetti sauce can cover the flavor of just about any veggie if it is cut up fine enough (or cooked and pureed first, then added to a sauce- just don’t add too much in the beginning!) A great cookbook we have used  to help  get you started can be found here: Deceptively Delicious: Simple Secrets to Get Your Kids Eating Good Food (this is an affiliate link) We have found that the bulk of the recipes are just as good if not better than our old standbys, but boosted with nutrition from ingredients kids would normally find “icky.”

9)    Consider speaking with a nutritionist or dietitian. Many insurance providers will cover a visit with a certified professional in your healthcare system. Utilize it! One visit can help you identify the places where your family’s diet may be falling short or deficient. They are also a wealth of information for helpful tips!

Countless studies have been done on the effects of a healthy diet for overall health and mortality reduction, and doctors have been harping us for years to pay attention. A good diet does improve health, period! Parents looking for a way to improve their child’s health in addition to medical treatments should consider making healthy changes in the family diet first, then consider adding specific dietary changes for the child with JA after consulting with their pediatrician and rheumatologist. While diet and nutrition may not be a “cure” for JA, it can definitely contribute to the overall well-being of your child.  In part two, we will cover some other diet specifics.

 

 

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Comments:

  1. Well, I don’t have much to add to the lengthy comments, just wanted to let you know I really enjoyed your article. Thought it was brilliantly done.

  2. Thank you so much for this well-balanced and well-informed post. I’ve had JA for 45 years now and most of that time, there wasn’t any treatment. So I tried a number of alternatives. None of them worked made the JA go away. What they have done, however, is help me with symptom control and to feel better. I take Western-style medication to suppress my disease and use a good diet and credible alternative treatments to be healthy and feel even better.

    One of the things that annoys me to no end is the way certain alternative treatments are said to be “natural” and “no medication.” I did some research for a post for HealthCentral about these issues and as part of that research, spoke to a practitioner of Traditional Chinese Medicine. He told me that the four marvels powder used for the boy in the New York Times story isn’t “no medication” as it was described. In fact, it is a powerful anti-inflammatory that has to be used correctly in order to have the desired effect. Additionally, it also has some pretty serious potential side effects and should, for instance, not be used by pregnant women.. In other words, it’s a medication.

    • Thank you Lene, I agree, many supplements that are touted as “all natural” or availble over the counter should still be taken very, very seriously. You make an excellent point!

  3. Catherine says:

    Last point: suggesting a balanced diet (including sweets and grains etc) to someone with an inflammatory condition is akin to suggesting sugar to a diabetic. Sure they would probably need the insulin anyway but unless they manage their diet properly they’ll need more and risk worsening their condition. Same goes for a celiac and gluten. Why put yourself in a position where you are guaranteed to need more meds than you might otherwise require? Especially considering how long these kids have to take them for. Balance is entirely subjective and unless you test the body and enlist the services of a person qualified in nutrition you can never achieve it. “Traditional” medical qualifications exclude nutritional training almost entirely. Our kids’ doctors are not qualified to do this. And we certainly aren’t.

    • Catherine,

      You make some very good points, and they are in keeping with everything that I mentioned in the article. I pointed out that a healthy diet is often overlooked as a tool for improving general health BEFORE specific diet changes are made. When my son was placed on the Celiac diet, we never, NEVER “cheated” and only went back on a limited gluten diet after genetic testing proved that the biopsy and blood results were from a different issue, not Celiac’s.

      My intent is not to demean parents who have no other options available to them, or to marginalize cases like yours, which obviously have many more issues to deal with than JA alone. Your replies strengthen the position that I have maintained, that dietary changes are not something that should be approached without consulting your medical team first, as food can be helpful (as in a helathy diet, rather than one filled with refined sugars, flours and excessive sodium) but also that “healthy” foods can cause problems with drug interactions, or as in your case, specific medical conditions.

      I had similar experiences with drug failures with my son that wreaked havoc on his system, and even resulted in hospitalizations. It was not until we found a rheumatologist that was also committed to integrative healthcare that we saw any major improvements. I have also known committed mothers who have tried to implement integrative medicine and seen less dramatic results in their children. Perhaps due to the fact that all the child’s conditions and nuances for treatments had not yet been uncovered?

      This disease is not a one size fits all, and that must be taken into consideration as well.

  4. Catherine says:

    Hi
    I don’t know you and I’m sorry if you have JIA, it sucks. But really….healthy food is worth considering? Really? Alongside traditional treatments? How is a biologic a traditional treatment? And where in the world does one find a doctor who takes food seriously enough to actually bother with educating parents, most of whom probably still soften the pain of the injection site with some kind of processed sugar?

    Please do yourself and your readers a favour. Read ‘The Autoimmine Epidemic’ and next time you try to more-or-less-but-not-quite suggest that a healthy, whole, unprocessed diet is absolutely essential for people suffering from these diseases, mean it. Don’t undermine the message before you even start.

    Regards
    JIA mom sick to death of sanctimonious pill pushers.

    • Hi Catherine,

      Yes, I have TWO children with JIA, and it has been a difficult road, although my children are both doing quite well now. I have also read the Autoimmune Epidemic, and it has been listed under “helpful books” under the “shop” tab since the publication of this blog.

      The intent of this series is to provide information on complementary and alternative treatments that may be beneficial to children with JA. In this post (the first) my objective was to illustrate the power of a good diet, and provide evidence-based research to support it. (if you followed the hyperlinks, you would see that I provided scientific research to back up my statements regarding the link between processed foods and autoimmune disease.) Although I still believe that traditional treatments (those prescribed in western medicine, and yes, including biologics) can be VERY important in controlling JA, many parents overlook the first step- a solid, healthy, nutritious diet, with consideration given to foods that may complement or counteract medications they have been prescribed. We have been very fortunate to have doctors who do listen to us, and do take the time to educate us in this area. If your child’s doctor does not do that for you, I would strongly suggest seeking another opinion, and hopefully you will find a reputable physician that shares your common goal.

      I also believe that in order to be successful making such big life changes, that compromises need to be made, and an all or nothing approach rarely works. In the same spirit as the fable of the tortoise and the hare, slow and steady wins the race. Before you know it, you are there, without burning out. Again, the intent was to give the average family practical tips and suggestions on how to get started, while still maintaining a bit of practicality for the typical reader. Very few are willing to make and stick to a complete diet overhaul without taking baby steps first.

      In no way was the message of a healthy diet playing a positive role in the control of autoimmune disease undermined in my post- I encourage you to read through it again. I do not believe that diet alone can “cure” JA, it is a scientific fact that at this time it is an incurable condition. Parents that consider diet alone as a means to “cure” JA are putting their children at risk, and that is something that I will NOT encourage. I do believe that healthy eating, along with specific diet modifications for JA have made a difference for my children, and that is the purpose of this series… to share that experience, backed by scientific fact, with other families in the same situation.

      Thank you for taking the time to respond, and best of luck to you in finding relief for your case of JIA.

      Sincerely,

      Kim Miller, Author- Living With Juvenile Arthritis

      • Catherine says:

        Thanks Kim and apologies for the tone of my first comment. I was referred to your post during a debate about this exact topic and the approach perfectly illustrates the point I was trying to make. I was unfortunately a little grumpy at the time.

        That JIA is incurable is undisputed but what I’m taking issue with is how food and supplements have been relegated to the “nice-to-have” along with other “alternative” therapies which may or may not have some incremental value – as opposed to being considered as integral to treatment as the drugs themselves.

        Diet is always described in terms of “improving general health” and “complementing traditional drug therapies”. Changes are often managed alone without the expert guidance of a qualified nutritionist and the benefit of sensitive blood, genetic and other tests to fine-tune the diet in such a way that it calms rather than irritates an already over-zaelous immune system. You’re absolutely right that certain foods can worsen JIA – spinach, in certain genetic conditions, is one of them. Oranges are another. Broccoli and carrots can be horrendous depending on how they’re prepared. Removing gluten but increasing consumption of other – super healthy – grains can wreak havoc. It depends entirely on the individual, their genetic make-up, the severity of their disease and how much damage has been done to the gut.

        While your advice is excellent for healthy families wanting to improve their overall health, if I hadn’t have known better it would have made my daughter’s arthritis worse. The only reason I know better is because for the past 7 months I’ve had no option but to treat my daughter through diet and supplements only – no drugs at all. Having failed on cortisone, methrotrexate and Enbrel she caught TB just as we were about to swap to a new biologic. It meant coming off everything overnight and watching her suffer through a month of what’s called Immune Reconstitution Syndrome while settling her on the truly awful combination of antibiotics that make up the standard TB protocol. Facing a full return of the pain she had been in pre diagnosis (both ankles, both knees, hips, lower back, left hand, neck and jaw) we needed to find a way of, at the very least, managing her pain. I stumbled onto a basic low-inflammation diet, read all I could, found a credible nutritionist and set about trying to ensure my daughter would survive the full 12 months of TB treatment.

        What I’ve learned has stunned me. I’d considered a diet change before, experimenting with the obvious gluten and occasionally even trying a reduction in dairy. Neither seemed to make much difference and while we remained more-or-less gluten free, I could not really justify the additional effort of completely overhauling our diets for whatever minimal improvement we may or may not achieve. We’ve always eaten healthily – whole grains as opposed to refined, organic where possible, water instead of juice, lots of veg etc. How bad could it have been?

        Here are some of the things I’ve learned from the nutritionist which were never addressed in any shape or form by the rheumatologist:
        My daughter has a MTHFR genetic defect which means that the standard folic acid supplement given with methotrexate is useless to her. By the time this was identified she has been on the drug for almost 3 years. Folic acid is fundamental to the body’s ability to detox. Take it away and see what the additional toxic load does to an over-reactive immune system! Her ability to produce glutathione, described as the mother of all anti-oxidants – was also severely affected.
        My daughter has a marker on her IL-6 gene (knowing that we found it less unusual that she didn’t respond to a TNF blocker…kind of wish they’d thought to test for this before subjecting her to 7 months of a drug that did little other than give her TB…).
        Other genetic markers include at least two others associated with inflammation.
        Low levels of good bacteria in her gut coupled with moderate levels of both Hemolytic Strep and Klebsiella. She also had Blastocystis hominis which is easily treatable with antibiotics but can be catastrophic if left untreated. Imagine being left untreated while on long-term immunosuppressants…
        Her urine had incredibly high levels of oxalates which may well have caused crystals similar to kidney stones in her joints. Oxalates are especially high in spinach for example. Oxalates are not an issue in a healthy gut but are awful to a person with any form of leaky gut or autoimmune condition.

        What the above means is that a generally considered super healthy breakfast of organic rolled oats and organic full cream yoghurt sprinkled with blueberries and almonds is an almost guarantee of pain for my daughter. It also means that vitamin C for example is a really bad idea – an otherwise natural choice for anyone trying to achieve greater health. I would never have been able to create a diet that accommodated all my daughter’s issues in a way that was healthy and that simultaneously lowered her levels of inflammation. And it’s hard! We are sugar, grain, legume and dairy free and my daughter eats a limited number of fruit and veg to accommodate for oxalate levels. The result? Instead of writhing in pain and not moving she races around on her bike (which she uses because she can’t walk yet). Her CRP has come down from 98.3 to 53 and continues to drop. Her allergy count has come down from 455 to 153. Her liver, kidney and thyroid function (which were all in the toilet in Feb) are back to normal. She can’t walk yet but she has almost no pain. She is not on any anti-inflammatories or pain meds at all. She does however take a significant number of supplements – all, ALL, prescribed by the nutritionist who monitors and adjusts doses according to how she tests.

        In contrast there are families all over the world attempting to achieve greater health through well intentioned efforts like yours while under the terrible strain of a child in pain who won’t go into remission. Because let’s face it – very few of them go into medical remission, let alone total remission…and even then they don’t stay there. They try gluten free but over weekends let up because “an all or nothing approach rarely works”. It’s hard and after a few weeks of no change they give up and report back that diet doesn’t work as a way to manage JIA. They self-prescribe supplements which they give intermittently because they are frankly too overwhelmed by everything else going on in their lives to expend energy on something that frankly won’t make any real difference.

        None would ever consider stopping the ‘traditional’ meds over a school holiday or weekend (“to give the poor child a break”…I’m quoting myself and my vague attempt at gluten free last year) or randomly increase doses or mix meds without the express approval of the rheumatologist. Most found the best rheum they could afford but are advised to “consider a nutritionist” when it comes to altering their sick child’s diet.

        I feel that vague and general advice on diet and supplementation undermines the efforts and needs of people like us who have no other choice. The traditional is no longer available to us and won’t be for another 5 moths. So we’re left with what came before – food. But it’s not a hocus pocus “alternative” non-scientific treatment. Done properly it is dependent on testing the individual (properly and repeatedly) and designing a nutritional support programme based on very specific genetic markers and predispositions. Every time I read of another mom who has tried a week or two of gluten free and failed to achieve an improvement and who then writes diet off as a credible way to treat JIA, I wish she’d rather not bothered. And every time a food/ supplement approach is described as complimentary I know that less and less people take it seriously. My own case is neither here not there. I’m very lucky to be married to a man who can afford for me to take time off work to literally dedicate myself to the study and implementation of a nutrition-based programme as a way to treat AI diseases. Not a single medical aid in South Africa will cover any nutritionist, supplement or test not ordered by a doctor – so it’s been an all cash experiment. We’re really, really lucky we can do it. Until it’s taken out of the “alternative” suite and placed firmly in the “traditional” one it will continue to be a luxury of the wealthy which strikes me as particularly unfair to the children of those with less means.

        Again, apologies for my tone before. Like most JIA families we’ve had a tough time since we got the diagnosis and we’ve just learnt that my son has exactly the same autoimmune profile as his sister. I fully intend on managing his environment in recognition of this profile, not in spite of it and hope with all my heart it will be enough to prevent him from developing one of these insidious diseases. But if he does, I will know that I have given the meds the very best shot they have to work properly…because his immune system won’t be overloaded with inflammatory food, toxins and allergens. Not addressing this, in my opinion, essentially doubles the work load of the drugs. It’s no wonder they’re so often failing to achieve what they were designed to.

        I haven’t read much more of your blog but I hope your children are stable and not in pain.

        regards
        Catherine

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