My Scleroderma Diet: Plenty of Juice Smoothies, No Caffeine or Alcohol

My Scleroderma Diet: Plenty of Juice Smoothies, No Caffeine or Alcohol

This week, Scleroderma News reported on the recent study, “Watermelon stomach and colon in a patient with diffuse cutaneous systemic sclerosis,” published in the journal Modern Rheumatology.

The news article informs us that:

GI complications, such as hemorrhages, low esophageal motility, and bacterial overgrowth, are common in systemic sclerosis patients. At times, patients can have watermelon stomach, which is characterized by vascular lesions coming from the pylorus, the valve that connects the stomach to the duodenum. These lesions are formed by dilated capillaries with chronic inflammation, and have been long recognized as one of the causes of GI tract bleeding.’

This one-patient study is thought to be the first reported case of “watermelon stomach and colon.” This is encouraging for scleroderma patients and medics alike, as it shows progress in understanding the nature of the disease process, with the colon also found to have a stripy appearance caused by blood vessel damage.

Gastro-intestinal symptoms are common in systemic sclerosis patients, both those with limited as well as diffuse subsets. ‘Watermelon stomach’ can occur in the most serious of cases, where damage to the stomach lining takes on the appearance of the stripes of a watermelon.

One of my current biggest challenges in managing my diffuse symptoms is my GI tract activity. Such activity starts in my mouth (dry mouth, small mouth, difficulty in swallowing and chewing) and extends to excess acid reflux, intense stomach pain, bloating, and frequent bathroom visits — by way of a few examples of the symptoms to juggle.

In December 2012, 15 years post-initial diagnosis, I had a personal eureka moment in “upping my health game.” I documented my progress at the time:

issuu.com/potion/docs/hot_news_web/8

cosmicfairy444.blogspot.co.uk/2014/07/my-juicing-progress-update-as-published.html

cosmicfairy444.blogspot.co.uk/2015/06/my-juicing-progress-june-2015-30months.html

Well, 43 months later, I am still dedicated to my daily juicing and diet regime. As I’ve already noted, the impetus for sticking to it is that I feel sooooo much better. I still have some (quite a lot) of work to do to return to how I felt pre-diagnosis, but this is the best I have felt since 2012.

The change in my diet has enabled me to see and feel improvements with a range of my symptoms. During the last 3.5 years, I have only needed antibiotics on a few occasions, due to dental extractions as opposed to ulcer infection. Granted, this may also be due to me taking bosentan 125 mg twice a day continuously since October 2012. However, continual antibiotic consumption over the preceding three years played its part in creating havoc with my gut. Acid influx was out of control, along with internal candida in my esophagus. Hardly surprising that I constantly felt so bloated, tired and lethargic, and was unable to eat much, as after a few mouthfuls, I felt full.

Back in December 2012, having spent another week in bed due to a virus, my “eureka” moment arrived and, from my bed, I ordered a juicer and the Jason Vale 7-day juicing program. By Day 2, I felt better and noticed a very welcome difference. By Day 7, I felt so much better that I have continued with daily juices ever since. For the first seven days, I made fresh juices, turning my kitchen into my pharmacy. After the first week, I reintroduced solid food.

My ‘Eureka’ Diet

In essence my diet changes include:

I start my day with the juice of ½ squeezed lemon with warm boiled water and ½ teaspoon of organic honey

Vit C SmoothieDaily Vitamin C Smoothie

I juice: 1 peeled orange, strawberries, blueberries, ½ pineapple, and then blend this juice with ½ banana and the same amount of natural yogurt. I add the yogurt as it neutralizes the acidity of the fruits, minimizing acid reflux potential.

Green Juice

Most days, I prepare this at the same time I make my smoothie, and then store the juice in the fridge until ready to consume.

I juice 2 golden and delicious apples, ½ peeled lime, cucumber, ½ pineapple. To this juice, I add 1 teaspoon of Spirulina powder, 1 teaspoon Wheatgrass powder, a probiotic capsule, and ice. The final product may not look very appetizing or appealing, but it actually tastes quite sweet and refreshing!

GreenJuice

Reduce pasta and bread, carbohydrates, starch, sugar consumption. Do not drink alcohol or caffeine. Do drink at least 4 pints of filtered water a day.

Believe me, abstention from both alcohol and caffeine was a difficult feat. However, their consumption was not a helpful for my body, even though the alcohol numbed the pain and made the world even more of a beautiful place. The “hangovers” were too intense and went on for too long. Again, not surprising, since alcohol is a natural depressant.

As for caffeine, I now, occasionally, have a cup of tea, but very rarely coffee. I feel that I abused my body with coffee during the first seven years of diagnosis to get me through qualifying as a female barrister in a male-dominated profession. During this time, I was eating very little in an attempt to minimize my GI symptoms. Frequent toilet trips whilst being an officer of the court do not work well together. Eventually, my body responded by collapsing, and I had to cease my court practice.

No meat

Again, I would never have believed that I would become a “vegetarian,” but the desire to feel good keeps me away from bacon sandwiches and roast chicken dinners. Eating meat proved to be quite a challenge for my digestive system to process.

Although this may look as though it requires huge discipline, the fewer bathroom trips, increased energy, less lethargy, and less stomach pain is the reward! I find that if I lapse and consume a “trigger food,” my body responds accordingly.

My diet is now a daily habit and  norm for me, as I want to feel good.

My lovely American friend and scleroderma patient Kelli Schrag has also improved by changing her diet and incorporating daily juices. I help Kelli with the “Healing Loving Scleroderma with Real Food” Facebook page where we post regular updates, tips, and recipe ideas.

Over the years, time and experience have taught me that “prevention is better than cure” when trying to control my diffuse scleroderma symptoms. As we know, there is currently no cure, with treatments targeting only symptom suppression.

Daily fresh juices provide my body with a hit of nutrients, minerals, and vitamins that do not place too much stress on my fragile digestive system by having to be broken down and processed by my body. All in all, I want to feel good.

I discussed GI symptoms in Day 11, 21, 26 of the June Scleroderma Awareness Month campaign. Here are links to those articles:

https://sclerodermanews.com/blog/2016/06/10/day-11-scleroderma-awareness-month-gastro-intestinal-involvement/

https://sclerodermanews.com/blog/2016/06/17/day-21-scleroderma-awareness-month-upper-gastro-intestinal-tract/

https://sclerodermanews.com/blog/2016/06/22/day-26-scleroderma-awareness-month-lower-gastro-intestinal-tract/

Also, here’s a link to recently published UK Scleroderma guidance for GI issues: www.rheumatology.org.uk/includes/documents/cm_docs/2015/s/ssc_full_guideline.pdf

Here’s the UK Scleroderma Study Group’s best practice guidelines for GI management: www.scleroderma-royalfree.org.uk/UKSSG.html

Editor’s Note: The opinions expressed in this blog article are not those of Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Scleroderma. Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

4 comments

  1. Bethy says:

    Thank You for your informative and helpful articles, Nicola!

    As someone with diffuse systemic scleroderma, I am wondering if you have tried blending instead of juicing? Juicing supposedly creates a huge spike in our blood sugar, whereas blending is not as bad, due to including the complete fruit and/or veggies along with the skin and fiber.

    Thank You again,
    ~Bethy

  2. Christine Wilson says:

    I think I might give the diet a try . As probably not as bad as Nicola . But getting that way . . Charging to loo . Dry mouth food getting stuck night mare ha ha

  3. Marla says:

    I would recommend reading books by Kris Carr and most recent book by Dr. Neil Barnard about cheese addiction, where he states that dairy products are very bad if you have an immunological disease (as scleroderma is) and he explains in great detail why. Dairy has also proteins that are very allergenic and cause immune response. So eliminating dairy, gluten, wheat is a must! Being vegan is very helpful and most holistic doctors recommend that for any type of immune dysfunction. They also say that green tea is very promising. There is no cure for scleroderma but following a healthy life style helps a great deal!

  4. dawn peake says:

    Morning I was newly diognosed a week ago with Systemic Scleroderma after suffering for over a year with severe symptoms that i knew were getting worse and i just did not feel well. Because i have back issues and im going through the change i kept putting things down to this. So did my GP. The dysphagia got so bad that i was referred to a reaumatologist who did blood tests that confirmed the diognosis as positive. Im terrified not sure if this is shock, my gp says this feeling is normal but i dont know which way to turn. Any advice of how to help the anxiety side. Im going to start juicing to try and feel more upbeat as the tiredness is major at the moment. I want to take a positive approach if possible. thanks Dawn

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