Killing your gut : Dietary link - could we be missing something?

With over 70% of our immune system being in the gut, it makes sense that more and more of us are looking towards our diet in order to better manage our symptoms. An under performing immune system means deficiency, and that is something an EM'er does not need!

Several members advocate gluten free , carb free , juicing and hypoglycemic diets . Personally a hypoglycemic diet has helped my co existing fibromyalgia . I have more energy and ,most definitely, noticeable respite from chronic gastro and urinary problems (GI). Feeling a little less fatigued is also impinging positively on my EM. Fatigue is a massive trigger for flaring ,so not feeling so exhausted means im better able to cope. Avoiding foods thought to be triggers such as spices, additives, alcohol and caffeine also seems to have impacted the daily ,pretty continuous flaring episodes.Intensity and quantity of flares getting slightly easier. Not saying im pain free , but I do feel like im getting a bit of a break :)

Swelling and itching have been two symptoms I have seen diminish- quite significantly!. Controlling my histamine intake has actually resulted in the most beneficial lifestyle change. My itching was intolerable, relentless- making me actually draw blood , and my legs were scarily swollen to x 3 size. I waddled like a duck and my skin was shiny, tight and so dry it looked like crepe paper :).A low histamine diet (plus antihistamine loratadine) has slowly helped reduce my legs back down to a pretty normal looking size. The most relief , however, is lessening of the accompanying itch.

Do certain foods exacerbate your EM or co existing conditions?

Do you follow a specific diet?

Please share your thoughts, diets, foods to avoid and any tips with community members

Attachments :

An elimination diet with some great recipes, and a toxicity test 'pulse test'. This pulse test can be done easily and, more importantly , for free at home.

Other links:

Antihistamines

http://www.livingwitherythromelalgia.org/forum/topics/antihistamine-therapy-in-the-management-of-em-revisiting-the-hypo

http://www.mindbodygreen.com/0-11175/everything-you-need-to-know-ab...

http://www.allergyuk.org/common-food-intolerances/histamine-intoler...

Hypoglycemic diet

http://gicare.com/diets/hypoglycemia/

Foods we think exacerbate EM flaring (Great post from last year started by dear member Frostbite )

http://www.livingwitherythromelalgia.org/forum/topics/foods-and-food-additives-that-cause-flares-in-em?id=6418999%3ATopic%3A59656&page=1#comments

Great article on excitotoxins 'The taste that kills' by Dr Russell Blaycock

http://www.infiniteunknown.net/wp-content/uploads/2011/07/Excitotox...

Top 7 foods to avoid for people that suffer inflammatory type conditions

http://www.healthyfoodhouse.com/top-7-foods-that-people-who-suffer-...

Diet to keep flares at bay? Old posts on topic

http://www.livingwitherythromelalgia.org/forum/topics/diet-to-keep-flares-at-bay

Are certain foods the root of the problem ?

http://www.livingwitherythromelalgia.org/forum/topics/are-certain-foods-the-root-of-the-problem

Anyone helped by diet?

http://www.livingwitherythromelalgia.org/forum/topics/anyone-helped-by-diet

153-DeterminingFoodAllergy.docx (50.9 KB) 154-Eliminationdiet.pdf (627 KB)

Top 10 anti inflammatory foods, herbs and spices.

http://www.healthy-holistic-living.com/top-anti-inflammatory-foods-herbs-spices.html

I have tried the full 3 or 4 month long elimination diet with the help of my doctor. I didn't see any change in my symptoms but lost a great deal of weight for sure. I know some people are more sensitive than others to certain foods so others may see more benefits than I did. I have resumed my regular diet because the small benefit I saw was not worth the cost and lets face it bland joyless eating required to maintain this. If I found eliminating a certain food group would ease any of my pain it would be worth it.

You have shared some great links Mads and hopefully others here can benefit from making some eating changes. Thank you for sharing those Mads.

Hi Guys,

I know I keep going on about diet and supplements, but its something most of our medics fail to look at. From my own work, I am convinced that this is something for consideration. Simplistically speaking, as the microvascular network supplies the nerve with nutrients shouldnt we look more closely at vitamin deficiencies/malabsorbtion that may be exacerbating matters (we really dont know do we?). Moreover, many of us have serious autonomic dysfunction, so giving our poor old bodies a break ie: rest rather than digest , would minimise expending that precious energy needed by our immune systems - remember 70% of the immune system is in our gut!

I know this is only one case study but its a protocol that suggests food for thought (no pun intended lol!). It highlights a nutritional supplement (basically a proprietary blend of reduced iso-alpha acids derived from hops, vitamin D3, selenium, and zinc), and an elimination diet (wasnt specified in any detail ,so I attach article on this separately).

'A Case Study Evaluating the Effects of an Inflammatory- Modulating Medical Food and a Nutritional Supplement Containing a Proprietary Blend of RIAA, Vitamin D3, Selenium, and Zinc in a Patient with Erythromelalgia and Raynaud’s Phenomenon.' (Kornberg, 2011)

Aside the study , just wanted to reiterate that the following supplements have been shown to reduce the pain associated with neuropathy:

  • Fat-soluble vitamin B1 (benfotiamine) - 150 milligrams (mg) one to three times daily

  • Acetyl-L-carnitine - 2000 mg daily

  • R-lipoic acid - 300 to 450 mg daily (or alpha-lipoic acid: 600 to 1000 mg daily)

  • NAC - 600 mg daily

  • Curcumin - 800 to 1600 mg daily

  • Gamma linolenic acid (GLA) - 900 to 2700 mg daily

  • EPA/DHA - 4000 mg daily, providing at least 1400 mg EPA and 1000 mg DHA

  • Vitamin B6 - 100 mg daily

  • Vitamin B12 - 1000 micrograms (mcg) of the methylcobalamin form, taken one to four times daily (up to 40 mg daily methylcobalamin may be used in extreme cases)

  • Vitamin C - about 2500 mg daily

  • Vitamin E - 400 international units (IU) daily (with around 200 mg gamma tocopherol)



If anything ,try to check:

  • Thiamine deficiency -.one of the simplest and cheapest things to remedy .The typical complaints of weakness and burning feet are often disregarded
  • Gluten sensitivity
  • B12 levels - too high or too low
  • Vitamin D levels -85% population deficient levels. High Vit D being used to help other neuropathies such as fibromyalgia, peripheral neuropathy etc.
  • Vit E - lot of work done on Vit E and neuropathy in cancer
  • Zinc - one of its functions is that it helps metabolise that vital B12

Thyroid function , too :)

http://www.livingwitherythromelalgia.org/forum/topics/spotlight-on-...

155-Eliminationdiet.pdf (627 KB)

Whats killing your gut?

http://www.rodalenews.com/gut-health

Read this great article on intestinal bacteria and immunity .

http://www.sciencedaily.com/releases/2015/03/150331121455.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Fpain_control+%28Pain+Control+News+--+ScienceDaily%29

My wife and I have always felt that diet does play a role in this condition… And eating certain ways helps for sure… Whether or not it can take it away is a question we want to answer. Not sure if it will work, but we are about to try the Wahls Protocol Diet… It’s a take on Paleo…

Amazing this article! Many years ago I was diagnosed has having Helicobacter pylori (H. pylori) and later suspected of having Crohn’s Disease, but it came back negative. During one of my many endoscopy examinations the gastroenterologist asked if I had rheumatoid arthritis and I said not diagnosed but I was sure I had even though the docs said not. He said the two things very often go together. Then I had a major flare up of what was diagnosed as Rheumatoid Arthritis! I always seem to be one step ahead of the doctors. So now reading about diet and thinking I have EM although again not what the doctors say, I do wonder if it is diet connected. So, it's well worth a try as the doctors aren't helping. I had a telephone appointment with my GP on Monday and asked what happens next? His reply was "Well nothing". So, I said does that mean that I have to suffer the rest of my life with these problems and he said it did, except he would mess about with pain killers! I think I have had every pain killer in existence and non of them have the slightest effect. The only thing that helps as like we keep saying is to but them in a bowl of cold water, well not really cold but it feels it as my feet are so hot. At the moment they are having to go into freezer bags first as I have two ulcers and dressings on and so I can't get them wet. One thing for sure it can't do any harm to try and find out about diet and use supplements.

I find anything spicy,alcohol,& tomato sauce, make me flare,I was told to drink cranberry or raspberry juice as rich in vitamin c,I was also told to try and eat a handfull of mixture of nuts,seeds,oats,etc a day.I no I don’t drink enough during day but as easy as it is I don’t,and eating a handful of seeds,nuts,etc I did for about a week or so as my husband brought me a couple of bags from health shop but for some reason I didnt carry on so weather it would have benefits I’m unsure

I have no experience with food restrictions or diet changes to comment on, but I am so very glad that you are getting some relief from the intensity of your symptoms!

Every holistically oriented physician and other healthcare practitioner I’ve seen for more than 15 years has believed the gut is the starting point for virtually all that ails us. A number of books address this as our “second brain” and there’s a lot of evidence on this. But I’ve found it tough to maintain a rigorous diet due to both effort and expense.

Great article on malnutrition(2015).

Shows different deficiencies (photos) and what could be missing in your diet. First one is red skin rash. Looks interesting.

http://reference.medscape.com/features/slideshow/malnutrition?src=wnl_edit_tpal&uac=222157BT#page=1

Celiac disease

http://celiac.org/celiac-disease/what-is-celiac-disease/

Gut- brain connection in mental health and chronic disease

https://www.psychologytoday.com/blog/evolutionary-psychiatry/201404/the-gut-brain-connection-mental-illness-and-disease

http://www.easy-immune-health.com/Increased-intestinal-permeability.html"/>

Ten diet rules for chronic pain sufferers

http://www.health.com/health/gallery/0,,20309924,00.html

Deactivating the master enzyme switch NB: Great research links on this one :)

http://www.wellnessresources.com/health/articles/master_enzyme_switch_deactivated_in_chronic_fatigue_syndrome_and_fibromyalg/

Have you got a disrupted gut clock ?

http://www.wellnessresources.com/health/articles/disrupted_gut_clocks_linked_with_ibs_gerd_obesity_and_other_gi_concerns/