Links betw nutrition and LE/LI symptom severity

[CCT67]

We all know Secondary and Primary Lymphoedema, and Lipedema are not the consequence of a poor diet. Despite what uninformed others may think or say to the contrary, perhaps in attempt to be helpful (a Lymphie friend of mine was told to eat mangoes to make her swelling stop while another was told it was purely an excess weight problem), these are diseases with no known cure. At least not yet. The good news is a lot more funding is now going into lymphatic diseases research and there is much greater medical and scientific motivation to find cures. Multimillions have been allocated via the National Institutes of Health to lymphatic diseases clinical and scientific research groups internationally. However we certainly still have a long way to go before we see ALL health professionals educated about LE & LI.

Until we have a cure our existing daily treatment eg compression therapy, CDT, SLD/MLD/pumps, etc will remain mainstay of symptom management, and slowing disease progression. The newest addition to this list is food/diet/nutrition. There is emerging research in the area of food and lymphatic inflammation and dysfunction. A good number of patients with Lipedema and Lymphoedema find severity of symptoms can be reduced, sometimes significantly, through specific dietary considerations. Many in this forum in addition to myself can attest to this. If you haven’t already seriously looked at the link between your own symptom severity and what goes into your gut after passing through your lips, it’s worth doing. If you’re asking why the gut matters... The gut is crucial as it’s where the lymphatics start within our body.

The attached video presentation from the 2019 Annual Lymphedema Symposium at Harvard University is worth watching. While professor Erlich’s delivery is a dull monotone, the content is very interesting due to recent research findings so stick with it. He’s one of the authors of the recent edition of the Lymphedema and Lipedema Nutrition Guide.

Another recent, excellent book is The Complete Lymphedema Management and Nutrition Guide: Empowering Strategies, Supporting Recipes and Therapeutic Exercises. Strategies in this book are backed by research and clinical evidence.

Hopefully these resources will provide insight and may become a valuable addition to your LE and or LI management/treatment tool kit.

A Lympherry Christmas to all

Catherine xx 🦋

youtu.be/krBvYTfxJks(Not working as expected?)

[Perido]

I'd find it difficult to manage without bread, partly because I tend to be underweight. I'm hoping the spelt/rye mix or whole rye breads, usually sourdough, that I buy (sometimes make) are OK?

[BADFoote in reply to Perido]

We live in a gluten free craze right now, but without testing, you can't tell if it affects you or not.

Rye flour contains less gluten than wheat flour, (which makes rye bread significantly denser) but Rye flour isn't gluten free. The good news is gluten doesn't bother everyone.

You test to see if it affects you by eliminating it from your diet for 10 days; then have 1 slice of bread and wait 2 days to see if there were any side effects, (e.g., gas, bloating, stomachache).

[CCT67 in reply to Perido]

Hi Perido

I eat Rye sprouted bread which is yeast free as all riding agents wreak havoc on my lymphatics.

Gluten doesn’t effect me but I do have an wheat allergy (red itchy rash all over if I eat it) so I’ve stayed clear of wheat flour for 18 years.

My LE instantly reacts negatively with extreme additional swelling within 1 minute of consuming: all dairy products, table salt, all chemicals/preservatives, rising agents (yeast, baking soda & powder), fizzy drinks, artificial sweeteners & sugar, lemons & limes, and alcohol of all types. Consequently I haven’t eaten/drunk any of the above for nearly 15 years. It’s not worth going through the agony of my lymphatics reacting to them and taking days and 1-2 MLD therapy treatments to recover.

I really only eat foods as they grow from the ground, totally unadulterated and mostly organic plant -based. I have worked out which foods harmonise with my lymphatics and which ones don’t 😊

[Perido in reply to CCT67]

Hi CCT67

Following treatment for cervical cancer, January 2017, I've developed secondary LE in one leg, extending from lower abdo to toes. I still feel that I'm a bit of a novice in learning what works for me in controlling it; but I'm fairly proactive about it and I'm up for trying most things in the name of trial and error. I've been interested in food/nutrition for a long time so it's very illuminating to hear how diet affects your LE.

I'm not aware that my LE is as sensitive as yours to diet but having said that I've never been one for fizzy drinks, artificial sweeteners or alcohol (very occasional wine). I keep an eye on my sugar and processed food intake; could possibly reduce my salt a bit although I mostly use sea salt or himalayan salt. Sprouted Rye bread is yummy so might try that when I've found out where to get it from. My fruit and veg have been mostly organic for many years; we get a veg box delivered most weeks. I like dairy and seem to be OK with it; most of my milk is goats milk but recently I'm having more plant based milks - it's a shame that organic ones are not fortified with calcium and vitamin D which is important for me as I have a high risk for osteoporosis (already broken a wrist). I take a vitamin D3 supplement but don't really want to add in more supplements as I feel I have enough to do managing my LE along with various other side effects from my cancer treatment; it would mean yet more expense and things to remember.

[CCT67 in reply to Perido]

Hi perido

I’m very sorry to hear of your cervical cancer as well Osteoporosis risk.

LE is a huge learning curve in many ways, from diet to all the other aspects of daily treatment. My LE is Primary due to shortfall of lymph vessels, nodes etc and it’s global ie everywhere I have skin it’s swollen. I have issues with lymph periodically leaking into my lungs which can causes breathing issues. Regardless of primary or secondary LE is such a beast and burden.

Here is the sprouted rye that I buy locally. Not sure if you’re in the Uk (this is a UK site)

everfreshnaturalfoods.com/s...

I drink either GM-free soy milk and almond milk, nothing but organic nuts and spring water, nothing else added. I’m not really a fan of vitamins added to milk/non-dairy milk because the version of calcium and vit D is not usually the most bio-available form and is therefore simply chemicals. I don’t take a raft of supplements as I try to get everything through the food I eat. I mainly take D, B-complex, magnesium, and a handful of Ayurvedic herbs such as ashwaganda. I eat a log of fresh ginger and turmeric as they are anti inflammatory and immune boosters.

An important mineral especially for Lymphies is magnesium which is essential but our body doesn’t produce. Walnuts contain magnesium so I eat a lot of them, I also take a food grade magnesium supplement before bed as it helps with the restless leg effect I get when lying down. A lot of Lymphies find magnesium benefits them. I buy Terra Nova and Viridian brands

Unexpectedly, I found that my swelling isn't as painful or extreme since discontinuing all fish, poultry and meat. I stopped eating them due to the environmental impact and was pleasantly surprised to find it also helped my LE. A few excellent documentaries on Netflix are Forks Over Knives, Game changers, and Cowspiracy

[Perido in reply to CCT67]

Hi CCT67

Thankyou for sharing this, I'm feeling inspired to try out some more dietary options. I've been wondering about magnesium so I might start with the walnuts. I'm in the UK so the link for sprouted rye is helpful for me.

I like your honesty about LE being a burden and acknowledging that it is a huge learning curve. Of all my cancer side effects (which includes some profound bladder issues) the LE is definitely the worst one. When I first discovered I had LE I felt a bit cowed by the oncologist, who was somewhat dismissive about the condition suggesting that all I needed to do was 'just wear cycling shorts'!