RLS and Celiac Disease

[mi_mariposa]

Hi everyone,

I have suffered for years from RLS (almost 2 decades). Over the last two years, my doctor had my ferritin levels checked and they were so low they were practically non-existent! Low iron stores can increase RLS symptoms.

After years of seeing doctors to determine why my vitamin/minerals levels are so low, I finally have a diagnosis: Celiac Disease. It is an autoimmune disease in which the body mistakenly believes gluten is harmful -- the body produces antibodies that end up attacking the lining of the small intestine. One of the most common symptoms of Celiac is malnutrition (due to the body not absorbing nutrients from food) because of the damage done to the small intestine. Celiac affects 1 in 133 people, but up to 97% are undiagnosed. See celiac.com (http://www.celiac.com) for more information about the disease.

Those of you suffering from RLS, I highly encourage you to work with your doctor on having your blood tested for Celiac. There are a few tests that can be run, including IgA endomysial antibodies, IgA tissue transglutaminase, IgG tissue transglutaminase and total IgA.

I wish I had this information years ago - please think about having yourself or a loved one tested!

[jcc]

There is a gluten sensitivity/celiac disease forum here, although it is not as active as it used to be... there are a few people who do check in and respond to posts.

In addition to iron deficiency, B12 deficiency can also cause symptoms of RLS. That is what happened to me. I later found I am gluten sensitive, although my family has not been "lucky enough" to get a celiac diagnosis. I say not lucky enough because so many people suffer from gluten sensitivity who don't quite meet the criteria for celiac disease... and therefore.. have a hard time finding doctors to dx it.

So, I do encourage anyone with restless leg syndrome to be screened for iron deficiency, B12 deficiency, and celiac disease/ gluten sensitivity.

mi_mariposa, you might want to can scan the right bar of The Gluten File for information that might be interesting to you. I hope your doctor told you that all blood relatives should be tested, too! And that for those who test negative, repeat blood testing should be considered at 3-5 yr intervals or if symptoms present.

I'm glad you found the answer. The average time it takes for someone to be dx'd is 13 years. Hopefully it is getting better, but ...
http://jccglutenfree.googlepages.com/delayofdiagnosis

....according to a recent youtube presentation by Dr. Green, 99% are undiagnosed!
http://www.youtube.com/CeliacDiseaseCenter

Thank you for spreading the word!

Cara

[mi_mariposa]

Hi Cara - you are right about the B12 deficiencies - I have that too! Thanks for the link to The Gluten File - I will certainly review.

My family refuses to get tested even though I bug them about it every time I see them...maybe one of these days my pleas will get through. My sister has hypothyroidism (like me), Sjogren's and other problems; I am sure she has Celiac.

For those reading: If your insurance covers it, I would ask your general physician for the blood tests - what do you have to lose? :-) If they come back positive find a good GI to work with. You might find that your RLS symptoms greatly diminish once gluten-free.

[jcc]

Dig Dis Sci. 2009 Sep 3. [Epub ahead of print]
Celiac Disease Is Associated with Restless Legs Syndrome.
Weinstock LB, Walters AS, Mullin GE, Duntley SP.
Department of Internal Medicine, Washington University School of Medicine, 11525 Olde Cabin Road, St. Louis, MO, 63141, USA, lw@gidoctor.net.
PURPOSE: Celiac disease may be associated with restless legs syndrome (RLS) because of an association with iron deficiency. Often, RLS negatively affects quality of life but may remain undiagnosed. This study evaluated the association between celiac disease and RLS. RESULTS: The incidence of RLS among 85 patients with celiac disease was 35%, with a prevalence of 25% compared with 10% of spouses (P < 0.02). In 79% of patients with RLS and celiac disease, neuromuscular symptoms began during or after onset of gastrointestinal symptoms. Iron deficiency was present in 40% of celiac patients with active RLS compared with 6% of patients without RLS (P < 0.001). After 6 months of a gluten-free diet, RLS symptoms improved in 50% of 28 patients. CONCLUSION: Screening for celiac disease in patients with RLS is important since this commonly overlooked silent disease may be a correctable factor for some patients with idiopathic RLS.
PMID: 19731029 [PubMed - as supplied by publisher] http://www.ncbi.nlm.nih.gov/pubmed/19731029
Sleep Med. 2009 Aug;10(7):763-5. Epub 2009 Jan 12.Click here to read Links
Celiac disease as a possible cause for low serum ferritin in patients with restless legs syndrome.
Manchanda S, Davies CR, Picchietti D.
University of Illinois at Urbana-Champaign, College of Medicine, 506 S. Mathews Avenue, Suite 190, Urbana, IL 61801, USA. smanchan@illinois.edu
OBJECTIVE: To describe celiac disease (CD) as a possible cause for low serum ferritin in patients with restless legs syndrome (RLS). BACKGROUND: Low iron stores have been found to be a risk factor for RLS with serum ferritin levels less than 45-50 ng/mL associated with increased severity of RLS. It has become routine clinical practice to test serum ferritin in the initial assessment of RLS. CD is a common genetic disorder that can cause iron deficiency. METHODS: Consecutive case series of four patients with RLS and serum ferritin below 25 ng/mL, who had positive screening tests for celiac disease. RESULTS: We report four patients who had serum ferritin < 12 ng/mL and positive screening tests for CD. All had CD confirmed by duodenal biopsy and response to a gluten-free diet. RLS symptoms improved in all four, with two able to discontinue RLS medication and two responding without medication. CONCLUSIONS: In patients with RLS and low serum ferritin who do not have an obvious cause for iron deficiency, we suggest looking for CD by simple, inexpensive serologic testing. Diagnosis and treatment of CD is likely to improve the outcome for RLS, as well as identify individuals who are at risk for the significant long-term complications of CD.
PMID: 19138881 [PubMed - in process http://www.ncbi.nlm.nih.gov/pubmed/19138881