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The Lupus and Gluten Connection

January 3, 2011
By Guest Blogger
|50Comments|


Today I am healthy, vibrant and pain free, but it wasn’t always this way. A few years ago, I became afflicted with intense, severe muscle pain and joint swelling, leading to hospitalization. It wasn’t until I discovered I had a severe gluten intolerance that I was able to turn it all around.

My symptoms began with random traveling joint pain. Then more joints started to ache. My feet were so swollen that my shoes would barely fit. Symptoms quickly worsened: bloody urine, heart palpitations and shortness of breath. Off I went to the emergency room. After being evaluated, I needed to be monitored, but there were no beds available for admission. Next stop, mediflight to another hospital in another state. I was diagnosed with lupus nephritis with multi-organ involvement.

Three hospitals later and on a slew of medications, I retreated with family as my body required 24-hour care. I needed assistance getting out of bed, washing my hair and just walking. I had so much brain fog, depression rapidly set in. What was happening to my body? Thoughts of taking my life came during my worst days as I lay in bed, sobbing alone. Days and weeks passed, and I pondered what had happened to this healthy, organic food eating, juicing, supplement-taking, bottled water-drinking body of mine.

I realized that my joints would scream after most meals. I requested a gene test for celiac disease from my specialist. She said, “Don’t even waste your money!” I found the test online and ordered it. Lo and behold, I had two gluten sensitive genes, one from each parent. It was at that instant that I became gluten free and within days my brain fog started to clear up, and the joint and muscle pain began to resolve. That was my salvation and the birth of a gluten-free fanatic.

As I have come to realize this journey as my gift, my mission is to spread awareness of the link between gluten and lupus or possibly other autoimmune disorders. I strongly acknowledge the potency of nutritional food choices; it literally saved my life. I now share my story with lupus support groups in New York City.

Today as a nurse practitioner and celiac educator, I focus on testing for gluten intolerance and celiac disease, as well as treat and nurture patients with celiac disease from the afflictions gluten can cause, especially multiple vitamin deficiencies. If you have joint or muscle pain, infertility issues, anemia, brain fog, irritable bowel syndrome, thyroid disorder, osteoporosis, gastrointestinal or an autoimmune disorder, get tested (preferably gene tested) for celiac disease. It can ultimately stop the rapid progression of this rising autoimmune epidemic in women.

Today I am a healthy and a vibrant gluten-free cook and foodie working on my first gluten-free cookbook. I empower women, especially those who have suffered a chronic illness, to live beyond their diagnosis and to live a full out and fabulous life!

Margaret A. Romero is a board-certified nurse practitioner specializing in women’s health and integrative medicine. She has a private practice at the Giving Nature Center in Chelsea, New York City.

Photo Credit: Kevin Lallier



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50 responses to The Lupus and Gluten Connection
  1. Thank you SO SO SOOOO much for this, Margaret! I am suffering from SLE lupus, with fibro & rheumatoid arthritis “overlap”. This story could have been my own, it is so close to what I have gone through & am still going through. I eat well, and have changed my IBS with daily refrigerated acidophilus (a godsend). I also juice regularly & have noticed that helps my lupus a lot… but I would have NEVER thought about gluten being a cause! I plan to talk to my doctor about gene testing me as soon as possible. You may well have changed my life forever… I thank you!

    One last thing though… I have no clue how to eat gluten free. When will this cookbook be available & in the meantime, can you offer me any other helpful books, tips, links, etc??? I very much appreciate it! God Bless you!!!!

  2. Margaret,

    Great blog post and a very compelling story. Thank you for sharing it and increasing awareness of the toxicity of gluten. There are so many of us out here with similar stories and my goal is to help people not just get by, but thrive with gluten intolerance. I also view my celiac disease as a gift and am grateful for this opportunity. I’m on a mission to help others. As you are, I’m also very passionate about this. I’m a nutritionist and exercise physiologist (and organic food eating, committed yogi) and believe it takes a mind/body approach to truly heal and find radiant health.

    Thank you for being part of the solution!
    Peace, love and gluten-free goodness.
    Melissa

  3. HI Margaret

    Thank you for sharing your story! I too know how it feels to be at the lowest of low points in bed and completely dependent on others to keep you functioning, showering etc, and then to come out the other side (thankfully!).
    Keep yup the great work…I intend to keep sharing the message of health too! :)

    Casey

  4. Margaret, thank you for sharing your inspiring story with us! What an eye opener this blog is!
    Thank you for spreading the word out there and educate people about gluten.
    Can’t wait for the cook book to be out!
    Keep it up!

  5. Thank you all for the encouragement! Lydia, my cookbook won’t be out until at least the end of the year. But my very first one that I bought that was so simple was GlutenFree Quick and Easy by Carol Fenster. You can also check out my blog,www.glutenfreeguidetohealth.com for some easy tips on how to get started. Also http://www.celiaccentral.org is very helpful. I know it may seem overwhelming but the transition can be pretty easy as you are only substituting not eliminating. Try to find some cooking classes or nutritionists in your area as well. Rachael Ray’s website also has a gluten free recipe section!

  6. Margaret, thank you so much for this post. I’ve been struggling with autoimmune problems for a decade and now have a multitude of symptoms and a positive ANA. I’ve noticed that I often feel worse after I eat and I’ve asked my doctor to check for gluten-intolerance and celiac disease but he hasn’t. I’ve been thinking of just going gluten-free myself but then I know I can’t get tested, right?

    Anyway, thank you for sharing your story and casting more light on this connection.

  7. Rhea,
    You can always do the gene test, so if you are gluten free for a while, you won’t need to start consuming it! If you do the blood tests, know that there are high false negatives that come with that test. Listen to your body, good luck and be well!

    Margaret

  8. This is such an inspiring post on a number of levels. First of all, congratulations on not backing down and fighting for your health. Although it angers me that we have to fight the healthcare system to get healthy, good on you for getting yourself tesed and finding the link between your lupus and gluten.

    I am 31 years old and have struggled with joint pain and an arthritic right hand and wrist for years. I’ve seen numerous specialists and have had more than a few MRIs and have yet to be diagnosed with anything specific or prescribed anything more than a wrist brace (never thought of that on my own! Gee, thanks!). Physical and occupational hand therapy were helpful, but of course my insurance stopped paying for it. When I left my job last year and tried to buy my own insurance, my bone spur on my right hand was deemed a preexisting condition that prevented me from purchasing coverage. A friggin bone spur! So I can only imagine the injustice faced by those with much more serious conditions trying to get health insurance.

    As of today–and partly inspired by Crazy Sexy Diet, which I am loving–I’ve taken all added sugars (even “healthy” ones like agave and the like–nothing but fruit for me) and gluten out of my diets and am following the 21-day cleanese. In addition to decreasing my online time (oops!) and focusing on adding more movement, I hope this will help. Your story gives me hope.

    Finally, I was an editor for a few years (those years on the computer were a huge contributor to my joint issues) and last year began taking prerequisites for nursing school in order to become a certified nurse-midwife and women’s health nurse practitioner. My mother is also a nurse and I’ve seen firsthand that nurses and other healthcare professionals are often the worst at caring for themselves. Just see all the workers who smoke outside of hospitals and the awful food in their cafeterias. I don’t say this to judge. I’m on the same journey of trying to make more healthful choices. But it’s so so important that nurses and other healthcare professional be models of healthful choices and thinking, and not just pill dispensers. I’m so excited to see that you’re an NP on this journey!

    And for CSL, keep featuring posts by more nurses. YAY!

  9. Lydia, the best way to truly eat gluten free is to transition to a whole foods based diet. To really avoid gluten, you need to avoid most food out of a package. Veggies, grains like quinoa and rice, sweet potatoes, nuts and seeds…. all these whole foods will help you heal. A big step in my healing from autoimmune disease was to add a green smoothie to the start of my day. Greens will really help you heal! A good quality probiotic supplement is great for restoring the balance in your gut. Kris’ new book gives lots of good tips that will guide you too. Good luck!

    Thanks Margaret for a great post!

  10. Thank you for this post. I have been GF since July of this year – my life was a mess of medical problems before that and while I feel sooooo much better now, I still love learning more and more about what gluten is connected to…

  11. Joselle, Yay for your 21 day cleanse! I would love to know how you feel, especially your joints! And congrats on pursuing your dream of being an NP/midwife! Email with any questions about gluten free or nursing, info@inspire4health.com.

    Stephanie,
    It’s really amazing the connections with all sorts of health problems. So glad you are doing better!!

  12. Margaret,

    I was so pleased to read your article. Your story mirrors mine. I was going through a host of stress and bad lifestyle choices, when I began experiencing similar symptoms. After going to a dizzying array of doctors, I was finally diagnosed with SLE through a positive ANA and having at least 5 of the core symptoms.

    I was so shocked though at how nonchalant the doctors were about all of the side affects in the meds they prescribed, so I started doing my own research and went with more natural methods. I transitioned to a plant based diet, but I never thought to investigate gluten! I do remember that when I was feeling particularly bad, I would go into junk food mode to try to cope, but I never felt any better! I wonder now if the gluten was making a bad situation even worse? Even now, when I have garlic bread or something with a salad, I feel a little funky afterward, so this bears investigating.

    I love your blog and your advocacy for women dealing with autoimmune disorders. There really needs to be more support, so keep it up!

    Love and Light,

  13. Kay, yes listen to your body! You can easily do a 2 wk elimination diet of gluten, you may want to also eliminate dairy as well, I would love to know if your symptoms resolve. Contact me at info@inspire4health.com!

  14. Thank you for this post! I was diagnosed with lupus in 2002 and notice sooo much less pain when I don’t eat gluten. You’d think that would be enough for me to stop for good..

  15. This post got me thinking… I just saw my nutritionist yesterday to review my recent blood work. I have had an ongoing anemia issue (low ferritin…although depending on who you talk to, they ask about hematocrit, or hemoglobin one other….I forget). Upon this review, I have also, according to my nutritionist, have had a persistent low grade infection (neutrophils and monocytes high, with lymphocytes low). The MD’s don’t look at these twice with the exception of the ferritin. But my CN says these are not in normal ranges…as is my glucose (comes in 75-83 fasting). She claims I am hypoglycemic. So my question is this…

  16. Sorry…computer has a mind of its own! My question is, who do I believe? I really don’t feel I am fully hypoglycemic, probably because I have dealt with it for so long. I really want to address the anemia issue but that one seems to be brushed aside…. I have had one MD tell me I am gluten intolerant…but he looked at no bloodwork and had a slew of his “stuff” to sell me….to the tune of $200/month.

    This is all in the light of a S2 IDC breast cancer in June 09 (lumpectomy and reexcision only…no chemo or radiation) where the blood work comes every 6 months. I also have Reynauds Syndrome and hypothyroid (with Synthroid at 75 mcg daily).

    How does one sort all this out?

  17. Amy,

    Don’t ignore the anemia, it can be a sign of malabsorption, possibly due to gluten. Are you gluten intolerant? Also there is a link with thyroid issues and gluten. Email me if you need more assistance.

    info@inspire4health.com

  18. As someone who has been through the celiac disgnosis minefield – dont bother with the tests! Just cut out gluten! You wont regret it no matter what the state of your health, it does no good to anyone.

  19. margaret, what lab did you use for DNA testing for gluten sensitivity genes?

  20. Thanks for expressing your ideas. I might also like to say that video games have been ever evolving. Today’s technology and inventions have made it simpler to create sensible and interactive games. These entertainment games were not as sensible when the concept was first being tried. Just like other designs of technologies, video games as well have had to grow by means of many years. This itself is testimony to the fast progression of video games.

  21. Where did you buy the gluten gene test from? I have lupus since 2004 and now am on disability. I would like to get the test for myself. Thanks. Angela 719-321-0640

  22. Hello, I am contacting you as a mother of a 23 year old daughter who has just been diagnosed with celiac. I asked my daughter’s neurosurgeon to test for it because I was not completely sure that her chiari malformation was causing her headaches. She tested off the charts for celiac and has many symptoms of lupus. Mouth sores, fatigue, joint pain, numbness. She has had tons of tests including MRIs, CT scans and blood work. Could there be a connection between celiac and lupus?

  23. Thanks for your article. I have SLC and going to try a Glutenfree diet.

  24. sorry SLE

  25. My daughter emailed a link to this article after she heard me crying about having Lupus and being in such pain. The tablets I am on have affected my heart rhythm which just makes me feel worse so i tried stopping them, but that made the pains worse. So I am now going to try your advice and stop eating gluten for Lent and see if it helps.
    Thanks for a great article.

  26. My Daughter has Celiac Disease, she is expecting her first child

  27. My wife (Donna) had lupus 15 years before changing to a vegan diet. Within a short time, a doctor in Kirksville, Missouri pronounced her lupus free.

    I was diagnosed with aggressive cancer before changing to a vegan diet (hacres.com). My body is now “off the chart” alkaline vs acidic–not a single pain in this 72-year-old body.

    Neither my wife nor I take any medications except my eye drops for eye pressure.

  28. Wow, that sounds like my story. I’ve been gluten free 5 years no Lupus flare ups.

  29. Sounds a lot like my story! Several years, many specialists and many medications later, it turns out I have gluten ataxia. It is sad that so many of us have to suffer for so long until we eventually figure things out for ourselves, but thankfully more and more people are sharing stories like this… thanks for helping to spread awareness.

  30. Great article. Could you share where you get the gluten gene testing done? Thank you.

  31. Margaret-
    Thanks for sharing- so many with this and it is so ” in the closet” thanks to you and Kris!
    I also suggest reading The China Study and t. Colin Campbell’s work – he and others have shown over and over that animal protein and other factors ( genes) can be a lethal combination for all autoimmune diseases and cancer- I have both- and my family is afflicted– keep on spreading the word!
    Maureen

  32. nicky said on May 1, 2013

    I was diagnosed with lupus a couple weeks ago, I was also tested for celiac by biopsy of the colon, which came back negative. I have been struggling with gluten free on and off for about a year. I have been strict with it for a little over a week and hoping to see some good results =)

  33. Margaret,
    I have suffered with a form of lupus for almost 20 years now. I have been through all types of treatments and experimental drugs. Recently when researching

  34. Margaret,
    I have suffered with a form of lupus for almost 20 years now. I have been through all types of treatments and experimental drugs. Recently when researching, which I have done so much if over the years I found the connection between gluten free foods and lupus. I truly believe that it is possible to feel better through the foods that you eat. I am almost 30 years old now and have been through so much since I was a little kid. Hopefully changing my diet to gluten free will help and now reading your article and seeing the true connection I have more confidence.

  35. nic said on May 22, 2013

    Where can I find the science behind the claim that gluten causes auto-immune disease?

  36. I was first diagnosed as depressed as a teenager then schizophrenic as an adult then bipolar. I found that the whole mental health field is just a sick joke. It was a severe intolerance to gluten.

    • You don’t have to spend the money for a test, just stop eating gluten for a week. If you feel better then you know that was your problem. Also there are 6 genes that cause gluten intolerance the standard tests only check 4.

  37. My daugther has a gluten tolerance issue. She has been as gluton free as possible for some time. Recently she has developed signs of lupus and is undergoing testing. I may be drawing at straws but am hoping that it is food alergy and not necessesarily lupus. Any thoughts? Thanks.

    • HI Brent,

      Its possible that food allergies can trigger an autoimmune response in the body. YOu can try an elimination diet or get an extensive food allergy panel in blood work. Good luck!

  38. My 17-year-old daughter was recently diagnosed with SLE. I’m working on eliminating gluten from her diet because of articles like yours, but I have a question. If she still eats gluten, but not as much as she used to, will she see a postive effect? Or does she have to go completely gluten free to see results?

  39. MP said on March 2, 2014

    Thanks for sharing this crucial information on the benefits of gluten free diet, Margaret. I have been suffering from autoimmune disorder since I was 16 and now its been 5 years since then. The symptoms only continued to get worst and worst. I too have the shortness of breath and heart palpitations. The joint pain in mild and only in my left knee and shoulder from time to time (the least of my problems). I present alpecia on my head (hair loss) and swollen lymph-nodes in neck, sores in mouth from time to time, and chest pains. I have not been given a solid diagnosis yet but they think it is either SLE or RA. I have never been on steriods but plan to soon. My doctor mentioned a gluten free diet and I have decided to try it starting since yesterday. I’ll let everyone know if it has worked. I am also anemic which I believe is due to an autoimmune condition caused by lupus call hemolytic anemia. I hope for the numbness and pain and lightheadedness to fade. Margaret, did you only go on a gluten free diet or also on a diet free of dairy and casein?