the patient celiac

Celiac Disease and Muscular Pain, Weakness and Atrophy by Irish Heart

10 comments October 30, 2014

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!

Comments
Cally
Hi Jess,
Just wondering if you had actually muscle wasting and nerve pain in your arms and hands, i have been a celiac since i was 18months old am now 39 and on a gf diet most of my life but got RA ten yrs ago and now it seems my arms are giving up on me since i had my baby boy almost 2yrs ago.
Have now been grain free, dairy free and nightshade free for 6 weeks but am still battling from day to day am very skinny 40kg and feel like am still not absorbing food properly, am hoping my gut is slowly healing and i will see results soon but this nerve pain is terrible :( do you think it is related to my celiac?
7/21/2016 6:12:57 PM
Sharon
In reply to Jess.
A few years ago at a celiac conference the dietician who works with Dr. Fasano noted that MSG was safe, but warned that Brewer’s Yeast was not because it is now being recovered from the beer brewing process. It was the talk of the conference as Dr. Oz had been touting it as a great source of B vitamins recommending to sprinkle on popcorn and veggies as it had a cheesey flavor. I had never tried it and honestly have never followed up on this or even checked out the label on any at the market to see if gluten was listed.
7/21/2016 6:11:39 PM
Ana Pimenta
In reply to Jess.
Sorry Jess! I did not get it at the first time. I even commented it with my husband saying that when we did your interview I missed this part… well glad for you!!!! And you are completely wright gluten can do us (celiac patients) really bad! Even after diagnosis we must be vigilant and avoid glúten contamination. Many people think is too much but it is really important for the health point of view. It can delay our recovery and also bring new diseases. All the best.
7/21/2016 6:11:17 PM
Jess
In reply to Ana Pimenta.
Hi Ana,
It’s great to hear from you and your story of recovery is inspiring. I am still amazed by how much damage gluten can do to our bodies.
Irish Heart is actually the guest author for this post, I came across this article on Facebook and she gave me permission to repost it.
Hopefully you two can meet each other on here!
Jess
7/21/2016 6:10:37 PM
Ana Pimenta
Jess it seems you were writing part of my medical history “Nearly 3 years after diagnosis, I am still rehabbing my muscles. I’ve spent a small fortune on physical therapy, occupational therapy, massage therapy, pelvic floor therapy programs and also osteopath, acupuncture, hydrotherapy. Without this intervention, I doubt I’d be walking now, read a bedtime story to my kids, drive, sit at the pc table, play with my kids, cook …. live with some quality! All the best and again thanks for sharing your “thoughts” with us!
7/21/2016 6:09:53 PM
Jess
In reply to jennifer.
Hi Jennifer,
Thanks so much for asking this. My understanding is that some brewer’s yeast is GF and some isn’t, depending on the source (sugar v. barley). For example, Blue Bonnet brand brewer’s yeast is made from beet molasses and is GF. Here is a link from Gluten-Free Living magazine’s website explaining the differences between types of yeasts. I will ask Irish Heart for her opinion as well.
Jess
7/21/2016 6:09:01 PM
Jess
In reply to Dana.
Thanks Dana! The marathon was an amazing experience (I hope to get a post up about it soon) and I ran right through your old stomping grounds.
It’s good to hear from you and I hope that you and your family are having as smooth of a transition as possible into your new home. We’ve got about 7 months until our big moving day!
Jess
7/21/2016 6:08:43 PM
cat
I get this completely! I recently went for a sports massage where I was told I have the posture of a 40 year old (im 25) and the shoulders of a professional prop (rugby player). as you can tell I was thrilled.. iv also seen physio, mctimony Chiropractor, chiropractor, osteopath, reflexology, acupuncture.
7/21/2016 6:08:24 PM
Jennifer
I thought brewer’s yeast is by product of beer and so is not GF.
7/21/2016 6:06:55 PM
Dana
Good luck Jess! I’m so impressed and in awe of all you marathon runners. Hope it goes well!
-Dana
7/21/2016 6:05:55 PM
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