Hi all! It’s a super busy week for me as I wrap up work and prepare to travel to New York to represent all of us with celiac disease in the NYC marathon on Sunday November 2nd as a member of the Celiac Disease Foundation’s Team Gluten-Free. I will be back to posting soon, but in the meantime wanted to re-post this excellent article about celiac disease and muscular issues that was written by my dear friend Irish Heart (shared with her permission). Like Irish Heart, I have suffered from neurological and musculoskeletal symptoms from my celiac diagnosis, which have, fortunately, improved with time. Hope you’re all doing well! -Jess
My musculoskeletal and neurological systems took the biggest hit while I was suffering from years of malabsorption prior to my diagnosis. I was constantly in pain and losing the ability to tolerate exercise. Nearly 4 years after diagnosis, I am still rehabbing my muscles. We’ve spent a small fortune on physical therapy, occupational therapy, massage therapy and pelvic floor therapy programs. Without this intervention, I doubt I’d be walking now or have the full use of my arms. You can’t imagine what I have been through to get to this point, but suffice to say, I no longer have curled shoulders, rigid muscles, an inability to sit, stand or lie down for long periods, burning neuropathic pain from entrapped nerves and my muscles don’t feel like “wood” (as they were described in a report back in 2010). I do still have some mobility issues and I do still have painful knots called trigger points in some muscles, but I am not the head to toe giant knot I once was. Trigger points are not to be confused with tender points as used in the FMS “diagnosis”.
The pain level has reduced from a “just kill me now 10” to an “I don’t feel like crying every day 4”. And I’ll take it!
If you are like me, you’ve done all you can to get well and resolve the various extra-intestinal symptoms and conditions you developed because you were so ill and suffering from malabsorption for so long.
If you still have sore muscles, please don’t accept the all-purpose “fibromyalgia” syndrome that doctors slap on anyone with muscle pain and soreness. It’s much like “IBS”…a collection of symptoms, not a diagnosis and the treatment plan is abysmal and often useless.
Some suggestions, based on 3 years of reading articles:
(1) have blood tests done to rule other conditions that may co-exist with CD such as lupus, MS, myopathy and hypertonia.
(2) make sure your thyroid is functioning properly
(3) take a good B-Complex (Country Life has certified GF vitamins. for example)
And get your muscle-support from foods!
Calcium. Milk products or fortified non-dairy such as soy, rice or almond, canned salmon and sardines with bones, bok choy, brown rice, English walnuts, almonds, green leafy vegetables such as broccoli, collards, turnip greens, beet greens and dandelion.
Potassium. Fruits and vegetables are a richer source than animal foods. Try bananas, beans, pumpkin, chick peas, romaine lettuce and endive. Good animal sources are milk products, meat, poultry, and fish.
Iron. This mineral is well absorbed from kidney, liver, oyster, seafood, meat, fish, poultry, and egg yolk. Plant sources are not as easily absorbed. Try brown rice, peas, lentils and beans.
Magnesium. Rich plant sources are soybeans, buckwheat, black-eyed peas, almonds, cashews, lima beans, Brazil nuts, pecans, whole grain rice, peanuts, walnuts and bananas. Rich animal sources are halibut, them haddock with less in other fish, shellfish and chicken.
Phosphorus. Milk products and liver. Rich plant sources are peanuts and tree nuts like almond, cashew and walnut. Good amounts are in chickpeas, lentils, lima beans, cocoa and chocolate.
Selenium. Brazil nuts, pork kidneys, lamb kidneys, beef kidneys, pacific oysters, turkey giblets, snapper, lamb liver, halibut, chicken giblets, mussels – blue, chicken liver, tuna – canned, salmon, scallops, bacon, liverwurst, pork liver, crimini mushrooms – raw, sunflower seeds, shitake mushrooms, oyster mushrooms, corn bran, rice bran, corn flour, white rice flour.
Protein. Meat, fish, shellfish, milk and eggs are rich in protein. Best plant sources are tree nuts, soybeans, peanuts, legumes and seeds.
Vitamin B1. Pork, whole or 2% milk, salmon, halibut, chicken, beef and egg. Plants are pecans, sunflower seeds, filberts, walnuts, chestnuts, beans, peanuts, avocado, peas and brown rice.
Vitamin B3. Liver then oyster, milk, clams, pork, beef, chicken, egg, and trout. The richest plant source is almond. Good plants are brewer’s yeast, black-eyed peas, spinach, peanuts, chestnuts, avocado, asparagus, broccoli, soybeans, beans, brown rice, and orange juice.
Zinc. Highest animal source is the oyster. Rich animal sources include canned salmon, beef, liver, turkey neck, shellfish, poultry and fish. Good plants are soybeans, pumpkin seeds, dry peas and beans, brown rice and sunflower seeds.
Further reading here: “Health in Depth: Muscle Weakness in Celiac Disease.” By C. Libonati. Published on www.glutenfreeworks.com on July 3, 2010.
And finally, please don’t settle for living with pain. Find a good therapist to help you slowly recondition your muscles and start you on a gentle stretching and/or weight training program. Gentle yoga is especially good as is Tai Chi. Best wishes as you continue your healing!