My Search for Answers: An Update on my Health

My Search for Answers: An Update on my Health

It’s been a while since I wrote a post about my health status and primarily it’s been because I feel in limbo. You might remember that I attended the International Celiac Disease Symposium in September hosted by the University of Chicago Celiac Disease Center. During some of the sessions, I realized my diagnosis of celiac disease wasn’t as conclusive as the doctors were suggesting nor did I have the correct tests done when I was diagnosed in January 2012. I left there on a mission. What is really going on with me?

I sought a second opinion from a gastrointestinal doctor recommended by other celiac disease folks in Columbus, Ohio. I knew time was of the essence because we were scheduled to move out-of-state mid-October. Dr. Salt reviewed all of my previous tests and said he wasn’t sure I had celiac disease. My tests were out dated and inconclusive. He believed I may have Chron’s disease. He also felt my thyroid and felt lots of nodules and said I needed to follow-up with an endocrinologist once I got to Virginia.

My upper and lower scopes were scheduled and the doctor performing the tests had some choice words for the doctor that previously diagnosed me. It wasn’t encouraging. On a wonderful and positive note, my intestines looked great! But, I’ve been strict about living gluten-free for 2 years now, so likely any damage would have healed during this time. It made me feel better though knowing my innards are looking healthy.

Dr. Salt ordered a small intestinal bacterial overgrowth hydrogen test, which was a piece of cake. The most difficult thing about the test is fasting and the cost. Insurance didn’t cover it. His office called me 2 days before we moved out-of-state to say I did test positive for SIBO. I needed to follow-up with a gastrointestinal doctor in Virginia. I took it upon myself to go on a gluten challenge. There was no way to get an accurate diagnosis and testing if I was gluten-free. Which leaves me to a reminder to all of you reading this, please don’t stop eating gluten until you’ve had all of your testing completed! I’ve been eating gluten once a day for the last 8 weeks to confirm my celiac diagnosis. Doubling down on probiotics has helped with the stomach aches but I can tell you my joints hate me, my pants don’t fit anymore, my migraines are occurring more frequently, my joints are tingly and almost feel numb, I’m sleeping all the time and I’m feeling more sad/moody/anxious than usual (some would call this “brain fog”). I wouldn’t recommend doing this on your own but I’m stubborn and on a laser focused mission to find answers. I do know at least that gluten affects me regardless if I am confirmed with celiac disease or they tell me I have non-celiac gluten sensitivity. I don’t care, I know how I feel now with and without it. Without gluten is the answer.

Once we moved to Virginia, we transitioned to new health insurance which took about 2 weeks to finally get that situated and then I’ve been trying to get doctor’s appointments here. I did get my thyroid ultra sound which is positive for Hashimoto’s but they also found a small lump/cyst which I will now need to follow-up with a surgeon for a biopsy.

I’ve been to a OBGYN here to get established as a patient to help me with my endometriosis. I’ve been to a general practitioner to help me get whatever is going on with my body figured out and to follow me through all my treatments. I’ve been to an endocrinologist who I was very unhappy with when he told me to investigate bariatric methods for weight loss and suggested I go on a 500-600 calorie diet all while explaining he has at least 3 patients a day with the exact same symptoms as I do but he has no answers!! What the hell? Very encouraging. (sarcasm noted)

My new primary care physician was great. I went in there will all my medical records, test results and my own written bullet point summary of my health situation. She confirmed that I do have both of the celiac genes, we discussed me feeling better on a gluten-free diet and now that I’ve been eating gluten she ordered the correct and most updated celiac blood tests. She also ordered tests for arthritis, thyroid problems and some deficiencies.

During the celiac disease symposium, I learned the following things about properly diagnosis celiac disease:

The 4 out of 5 Signs Rule for having celiac disease – you should have 4 of 5 of these done in order to diagnosed celiac disease:

1. Presence of signs and/or symptoms compatible with celiac disease
2. Positive serology testing (TTG +/- EMA)
3. Compatible HLA genes (DQ2 e/0 DQ8 positive)
4. Positive internal biopsy with enteropathy (damage) typical of celiac disease
5. Resolution of symptoms with a strict compliance with a gluten-free diet

Well, now I know I have #1, #3 and #5 but #4 was normal and #2 came back normal after eating gluten again. She also did extensive testing for the thyroid problems (only after I did all my research online to make sure I got the exact tests needed for proper diagnosis). Those results haven’t come back yet.

So what does this mean?

  • I still need to follow-up with a gastrointestinal doctor here in Virginia and have another colonoscopy to see if I have any damage to my intestines.
  • I need to follow-up with a new endocrinologist about my thyroid and the biopsy.
  • I might have non-celiac gluten sensitivity and that’s okay. After this trial period I know living gluten-free for the rest of my life is the only option for my health.
  • I’m dedicated to living a gluten-free lifestyle and supporting and advocating for all of us (regardless of your reason for living a gluten-free life!)
  • I’m going to continue to search for medical answers and share my story with all of you to help you too!
  • I’ve learned that nothing is ever cut and dry with auto-immune diseases.
  • And finally, but maybe most important, I feel completely betrayed by my other doctor. I trusted him. I thought he knew what he was doing and finally found my answers. I am angry all over again.

The National Foundation for Celiac Awareness has an entire section on their website covering non-celiac gluten sensitivity. In reading it for research on this blog post, I know notice that I have every single one of those symptoms for NCGS. Look at what they say directly from their website:

What are the symptoms of non-celiac gluten sensitivity?

Non-celiac gluten sensitivity shares many symptoms with celiac disease. However, according to a collaborative report published by Sapone et al. (2012),  individuals with non-celiac gluten sensitivity have a prevalence of extraintestinal or non-GI symptoms, such as headache, “foggy mind,” joint pain, and numbness in the legs, arms or fingers. Symptoms typically appear hours or days after gluten has been ingested, a response typical for innate immune conditions like non-celiac gluten sensitivity.

If the symptoms are so similar, how is it different from celiac disease?

Non-celiac gluten sensitivity has been clinically recognized as less severe than celiac disease. It is not accompanied by “the enteropathy, elevations in tissue-transglutaminase, endomysium or deamidated gliadin antibodies, and increased mucosal permeability that are characteristic of celiac disease” (Ludvigsson et al, 2012). In other words, individuals with non-celiac gluten sensitivity would not test positive for celiac disease based on blood testing, nor do they have the same type of intestinal damage found in individuals with celiac disease. Some individuals may experience minimal intestinal damage, and this goes away with a gluten-free diet.

Research has also shown that non-celiac gluten sensitivity does not result in the increased intestinal permeability that is characteristic of celiac disease. Increased intestinal permeability permits toxins, bacteria and undigested food proteins to seep through the GI barrier and into the bloodstream, and research suggests that it is an early biological change that comes before  the onset of several autoimmune diseases.

What I really want you to take away from this blog post and the reason I share the detailed account of my journey with this is you know are armed with extra information on your mission for answers. Hopefully, some of you reading my blog will realize you have similar symptoms as me or you have more information than before to get accurate testing and become and advocate for your own health. No one knows your body like you and it’s essential to put that information together with the medical world in order to get correct diagnoses!

Of course, I will keep posting about my journey and I would love to hear any of your stories. Any of you going through the same thing? Have you been through the same thing? 

Many of my readers not only learn from me but from your comments as well, please feel free to share your information in the comments section below. 

Your TMI celiac and gluten-free advocate

Comments

  1.  Amanda Yoder says:

    Wow you amaze me (and inspire me somewhat) to spend the time and money to keep trying to figure this out! I know I’ve been helped by going strict gluten free and have a reaction to even the tiniest bit, but no Dr. has helped me–the primary care just said well if you feel better, keep doing that and a gastro I went to see just wanted to do the scope, which I’m uncomfortable with as a first step–I like to leave my insides alone from machinery if possible. I worry about down the road because I don’t have the documented illness and I had already unknowingly done the elimination diet before going to the Dr. the first and when I tried to re-start gluten (just one slice of pizza), I had constant stomach pain to the nth degree and constant diarrhea!

     

    •  Rebecca Black says:

      HI Amanda! Thanks for your comment. I guess I promised myself that I would chronicle my entire journey and it’s my mission now to makes sure my own health is under control. I am fortunate we have health insurance and can afford the medical procedures. If anything, my experiences can help all of you in finding your own answers in this crazy journey! Thanks for your comment
      Rebecca

       

  2.  Susan says:

    Wow you are beautiful and glowing!! You can see when someone has been living gluten free, they are so much more attractive. I’m finally going for all my tests and colonoscopy next week Friday whoop whoop!!

    My gastrointestinal doc said that if you need to be on the gluten challenge for at least 3 months if you have been off so long, or else you will get a sure fire false negative.

    With regards to your thyroid, I hope you are avoiding all forms of soy! (Please investigate further on the link of soy and thyroid issues.) Going off gluten, I upped my intake of soy which had disastrous effects on my thyroid.

    Good luck beautiful lady, I love your posts! xxx

     

    •  Rebecca Black says:

      Susan – Soy is definitely on it’s way out of my diet. I never really paid attention to it because dairy made me so sick. Especially when I bought fancy coffee drinks, they only offer soy or regular milk/cream. Hopefully, my new gastro doctor here in Virginia will really be able to put me on the right track.

       

  3.  Allison Love says:

    I got diagnosed two years ago with Celiac. I only had lab work done because I have a congenital heart defect and putting me under sedation is more dangerous to me.The gastroenterologist I saw at my local hospital wanted to do a scope even though he knew that I had a congenital heart defect. I had a lot of questions for him which he didn’t answer. I am now switching my care to a new gastroenterologist at the hospital that I go to for my cardiac care. I am nervous but excited to see what the new gastroenterology team has to say. I am looking forward to getting the answers to my questions especially because I am getting ready to leave my community college for my local university if I get in. Anytime I get a little bit of gluten by accident my gi symptoms come back worse each time. I am down for at least a week or two. I know that I am lucky to have my state medicaid which will cover appointments and tests with specialists.

     

    •  Rebecca Black says:

      Allison- Bravo to you for taking control of your own health and getting a second opinion. I commend you for that because I know it can be tough. Thanks for sharing and good luck on your journey! Rebecca

       

  4.  Candice says:

    I’m sorry to hear you are going through all of this. I know how frustrating it is to think that you have all your health problems figured out, only to feel that there is still something not right. I was diagnosed with NCGS after a rule out of celiac. I felt 90% better after going GF, but three years after I was diagnosed I started having symptoms again. This past April I found out I have other food allergies and after removing those foods from my diet, I’m finally feeling better. As the wise Ben Franklin said, “energy and persistence conquers all.”If there is one thing I have learned from my experience, it’s that I am my own body’s expert, and will keep advocating for myself, and my health. Good luck in your continued search.
    Candice recently posted…AllerEnergy: Soft Pretzels!My Profile

     

    •  Rebecca Black says:

      Candice- Thanks for sharing and now I know that this is a pretty common phenomena. It’s very frustrating when you think you found the answer only to find yourself looking at Pinterest in a doctor’s office again. I’m finally started to get some better answers and working on adjusting my diet as well to maximize healing for my body. Love the Ben Franklin quote – that’s my mindset right now!
      Rebecca

       

  5.  lfinks123 says:

    Hi PLC
    I have been following your blog since last year when my 12 year old daughter started having skin issues, and GI issues. She was scoped, blood work etc. All neg for celiacs. They told us she has IBS. When we removed gluten from her diet she stablized and has been gluten free for a year now, yet still has ongoing boils. She has been diagnosed w/ a skin disease, she gets boils. It is classified as an autoimmune disease. You have many autoimmune diseases too. I believe all celiacs, as well as all autoimmune issues stem from “leaky gut”, which your Doctor will not acknowledge. I had a stool test done on my daughter by Enterolabs, which analyzes what foods you are reactive too. She is reactive to gluten, egg, soy and dairy. We are working with a naturopath to try to heal her gut. This is all new to me, I am not a new age hippie type person, but have learned so much about medicine, etc. Per what i have read, immunecells in our gut have become sensitive to proteins from certain foods or bacteria. These immune cells launch an attack (autoimmune response) whenever these proteins (our triggers) are present. Hashimotos or Graves disaces is when autoimmunity attacks the Thryoid gland. We all have to be our own advocates out there (in this case I am my duaghter’s!). good luck in your search, i hope you consider researching my theory!

     

    •  Rebecca Black says:

      Thanks for sharing your experience with me and my readers! It’s times like these that eventually help others the most. The more we can talk about the issues like this in our lives, in a community that understands, the easier it is to be an advocate for your own health. You are correct about auto-immune diseases. They love to hang out with each other in our bodies. I’ve always found that fascinating. I’m glad you finally found answers and are on the road to recovery with your daughter.
      Rebecca

       

  6.  connie curtis says:

    There are other testing options that can tell you about celiac and food allergies so that you dont have to eat gluten. Its through DNA. A good site for information in general. I recommend Gluten Free Society. If I hadnt found this site and doctor. I would be getting sicker so I offer this as support to you so that you will get better and get the correct diagnosis. Good luck.

     

    •  Lou says:

      I stopped reading your blog as I knew you were on the wrong path and leading people to hell that need help.

      BUT: I am proud of you now and hope you have reached all the people you miss lead on your blog. I can tell you I did read it but stopped when I could tell you were not leading people down the correct path.

      My story is almost like yours but I had gut problems that had to be address before I got to the point that I could say. I have my health back with damage, because I couldn’t find help. I had a blood count of 7, I hadn’t eaten wheat and dairy for a year my DR said I had to eat gluten and thru it up in the hospital…She then said you have Celiac Disease, but the 27 biopsy’s showed nothing. BUT did make me want to look it up on the internet to get help that lead me to the correct testing to prove my feelings. Glad that you found the correct path for your health and now can help people.

      I am so glad that you got help and now will help everyone that need it when they find your website. I will not delete your emails. Thank you for tell us. (I don’t know why I even opened this email, but do now)

       

      •  Rebecca Black says:

        Thanks for giving me another try Lou. Happy Holidays!

         

    •  Rebecca Black says:

      Thanks for the comment Connie! I’m glad you are feeling better and I appreciate your comment  Rebecca

       

  7.  Sharon says:

    Your story sounds so familiar to mine. I am now trying to find some new Dr.’s since as of the new year I am no longer HMO. I think I needed to get all these tests done too. I asked my last Dr. and she said no, just continue eating GF. You have an intolerance. They never tested me for Celiac’s until I was GF for 3 years. They then wanted me to go back to eating Gluten for 3 months. I just did this, but gained 30 pounds. I feel like a fat, gross cow. They then tell me that I needed to lose weight cause now I am overweight. Thanks so much for this blog. I know that I am not alone.

     

    •  Rebecca Black says:

      Thank you Sharon for leaving a comment. I appreciate it! You are not alone and we can get though this with the support of each other and sharing our experiences with others. That’s why I started PLC.  Rebecca

       

  8.  Alexa says:

    Hi Rebecca,

    First off I would like to say that I have Crohn’s Disease, which is why I follow you! I eat a diet free of gluten, most dairy, corn, soy, peanut, tomato, flax, lentils, peas, pineapple, grapefruit and more because those things irritate me. I am 19 and have had it since I was 12. If you need anything, feel free to email or Facebook me. You’re posts have helped me through some tough times and gave me hope about feeling good and having lots of food options. Keep doing what you’re doing, you are close to answers!

    XO,

    Alexa

     

    •  Rebecca Black says:

      HI Alexa! Thank you for your message. I love that I’m able to help you even though we have different health problems. I must say being ages 12-19 and going through this, you will be able to conquer the world! Rebecca

       

  9.  Shannon Martin says:

    Hello,
    Your story sound so familiar too me. I was diagnosed with Endometriosis two years ago. One year ago I had surgery to remove as much of the Endometriosis as possible. During the surgery the doctor found out I did not have it at all but had an abundance of Scare Tissue growth throughout my abdomen, from a previous surgery. The mis-diagnosis of the Endometriosis is very common for Abdominal Scar Tissue overgrowth. I never truly felt any better after the surgery a year ago and came down with some sever symptoms that were extremely difficult to diagnosis. Every test I took came out beautiful. All I wanted to hear from the doctors was that they had a bad test result and that they knew what was wrong with me. My doctor suggest that I try to go Gluten, Corn and Soy free about 5 months ago. Slowly most of the problems slowed down but still have not gone completely away, I have found Soy to be just as bad as Gluten for me. Then 2 months ago I was diagnosed with SIBO. I have found that going off of all flower (of any kind), yeast and especially sugar products makes a massive difference. Even Gluten-Free cupcakes and cookie make the SIBO worse. I have recently gone on a Candida diet plan with minimizes yeast, gluten and sugars into your system and have found it to be the best thing I could do for myself.

     

    •  Rebecca Black says:

      Thank you Shannon for sharing your story. I realize this is such an ongoing journey but it is completely frustrating at times. I’m working on changing my diet all over again and re-evaluating what foods my body responds to! Again, Thanks for the comment. Rebecca

       

  10.  Ronnie says:

    I’m glad I read this. At first I wasn’t because I felt like this story would hit closer to home for me. Well sounds alot like it would. Thanks so much for this post. I look forward to hearing more about your diagnosis.

    Ronnie

     

  11.  lori says:

    Hi Rebecca, i too have done loads of research on all of this. This is the first time i hear about the part about non celiacs wont test positive on blood tests. Could you verify what you mean by this. Do you mean the genetic testing or the TTG test. Knowing this part helps me answer alot of questions. Thank you for all your hard work. I am a huge advocate for celiac and getting the proper diagnosis before going gluten free. Once you make the switch it is very difficult to get all the aswers. I am always advising for people to do all the testing before going gluten free.

     

  12.  Heather says:

    I have 5 out of 5 of the indicators listed above.  My biopsy results were negative but gastro says the visual scan done when they were taking tissue samples of my badly damaged intestines was enough to make the diagnosis. I had also been told by a rheumatologist (who was the one who finally did the blood work for Celiac and made the initial diagnosis) to go ahead and start the gluten free diet immediately. So I had been GF for 2 weeks when I had the endoscopy.
    It’s been 5 years since going GF and I feel much better, but am not symptom free because of other health issues.
    In the 5 year journey, I have been diagnosed with interstitial cystitis (a bladder condition thought to be autoimmune), hiatal hernia, GERD, colitis, and endometriosis. Prior to being extremely ill 6 years ago, I was pretty normal. I was a little overweight, tired a lot, migraines, seemed to get a few viruses (cold, flu, sinus infections) a year. Then my immune system just crashed under severe stress. Good news is, I rarely get sick anymore and I am at a healthy weight. I just have a lot of bowel/bladder issues. A follow up endoscopy last year revealed that my intestines were completely healed, but also that I had the hiatal hernia and GERD. Then a colonoscopy revealed the colitis. I have good days, I have bad days, but I am convinced that gluten is evil.  When my middle daughter started getting migraines at 9 years old, was tired all the time and got severe stomach pain, we had her tested. She didn’t need the gene test because obviously she would have had it (because of me), but the endoscopy and blood work were positive. The specialist she saw said it was the highest indicators she had ever seen. She hasn’t had a migraine or stomach ache since going gluten free. She enjoys soccer and softball and is exceling in school! OMG, I went on and on!  Good luck to all of you trying to find the answers, but in my opinion going gluten free can only help regardless of who you are!

     

  13.  kunzfamily says:

    Hi, I have celiac. I deal with joint aches, headaches, other daily side effects. In September, I started reading Kimberly Snyder’s Beauty Detox book. I lost weight & never felt better. I had a lot of energy. The only negative( for me) was the Food item she suggests to eat in moderation is corn. Corn is a big no-no for me. It’s on the highest side effecting the list of food intolerances. Other than that, I loved her advice. Her recipes. Her science to back up her reasoning, helps wrap your mind around why, what you’ve done in the past doesn’t work. After a week of following her plan, every terrible side effect deminished. I loved how I felt.
    Then at thanksgiving until now, I started eating all the staples (GF of course) and stopped following her advice on when to eat (which is not painful like the detox diets I’ve tried in the past. ) . I’ve had very low energy, body aches and pains, drinking more coffee and alcohol, feeling super dehydrated even though I’m drinking water. now coming down with a bad cold and over all feeling slumpy. When i was taking her advice and sticking to her plan, I felt I was able to fight off colds, and I did.
    After reading many diet books, trying weight loss supplements from Powder City, teas, seeing a nutritionist, chiropractor for weight loss, Kimberly’s book is the best fit for me. It’s about life changes & I want to feel great again, so I’m re-reading her book.  if you don’t want to buy her book, her website & almost daily emails gives great tips. Google her.
    kunzfamily recently posted…Here comes the Funky smile…My Profile

     

    •  Rebecca Black says:

      Thank you for the recommendation!

       

  14.  vickie says:

    Would you recommend Dr. Salt. I live an hour and a half from Columbus. I really need a Dr. that understands Celiac.

     

    •  Rebecca Black says:

      I loved Dr. Salt! Yes, I would recommend him.

       

      •  Vickie says:

        Thank thank you thank you. Dr. Salt was wonderful. Many miles to go in this journey but he was/ is so good at listening to what I described as pain and needs. He was the first ever to hear what I said…….I am starting to be hopeful.

Celiac and Your Sex Life – Things to Consider…

Celiac and Sex – Tips to connect with your partner.
Celiac and Sex – Tips to connect with your partner.

Celiac and Your Sex Life – Things to Consider…

Today I recorded a podcast and discussed several issues regarding celiac disease and your sex life. It’s mature content but is not explicit. I don’t go into details about my own sex life, but I do offer tips from my own life to help you feel close to your partner again.

It’s something that many women struggle with and is not just a factor associated with celiac disease. However, having a chronic disease makes feeling close to people difficult because it involves trust and communication above and beyond any physical intimacy. This makes dating and finding a new partner extremely difficult. There are people out there that struggle with their current partner and feelings of guilt, frustration etc. when it comes to your sex life.

I talk about things to consider before rushing to celiac disease and gluten to blame for your lack of sexual desire.

There are tips on how to make it better for both of you and the importance of learning to compromise.

Hopefully, this podcast will allow you to think about the how’s and why’s of a slow sex drive and give you inspiration to try my tips to feel close to your partner without the negative feelings.

Enjoy!

Rebecca

P.S. I have a ton of podcasts covering a wide range of issues with celiac disease on BlogTalkRadio.com or you can find me on iTunes and subscribe so you never miss an episode!

P.S.S. I am also Andrew Cordova’s co-host of his GF Magazine Podcast!

25 Things I’ve Learned from Celiac Disease

25thingsaboutceliac

It’s been an incredible life long journey for me (and many of you) until I finally got the answers I needed for all my medical problems. It seems as if it were yesterday that I was sitting in a doctor’s office, waiting to be seen, only to leave disappointed and without any hope or answers for what was wrong.

Another doctor, another prescription and still no relief…

But the last few weeks, I’ve had some time to reflect and really think about what having celiac disease means to me and some of the major things I’ve learned over the last 18 months through my own personal experiences and the last 10 months as a blogger. If you have things you learned about gluten-free living or celiac disease, please feel free to post them in the comments so other readers know they aren’t alone!

  1. My celiac disease is not your celiac disease. I can’t emphasize this one enough! We all have different triggers and ailments so it’s incredibly important to pay attention to your own body versus what you hear from me or others on forums and websites.
  2. Celiac comes with other problems. Endometriosis, thyroid problems, arthritis and vitamin deficiencies for me!
  3. Vitamin & Nutrient levels should be tested on a regular basis to ensure you are supplementing properly to nourish your body with what’s missing.
  4. Gluten will make you feel crazy, act crazy, think you’re crazy and make you paranoid. It consumes you life and there are times when I just have to stop and think… at least it’s managed with food.
  5. It seems to be the only disease people don’t know enough about to tell me how to live my life. Now, gluten-free is another story but celiac disease usually doesn’t get too many unsolicited comments or advice from others.
  6. You have to be incredibly educated about celiac disease, living gluten-free and your body to be safe as much as possible.
  7. It’s essential to learn how to plan accordingly when traveling, dining out or anything out of the norm to prevent you from being stuck.
  8. A gluten-free emergency supply kit is a necessity not an idea.
  9. Poop can tell you so much about your eating habits and health of your body!
  10. I still learn about gluten in things and are surprised by it – tea bags are my most recent discovery!
  11. The gluten-free and celiac community is amazing and I am honored to be a part of it!
  12. I’ve come to realize that packaged gluten-free food is my worst enemy. For my health & my waist line – real foods is where it’s at!
  13. Celiac gave me the opportunity to see who my real friends are and learn the ones who care enough about me to always make me feel safe.
  14. Celiac and fitness is an interesting concept. I’m excited to come out with my program late summer!
  15. I’ve learned to accept the days when my body won’t cooperate and stopped beating myself up about feeling tired, having a headache or achy joints.
  16. Being curvy and healthy is more important than being lean and unhappy.
  17. Living gluten-free doesn’t have to be more expensive – you just have to plan better and eat clean to keep the budget tight.
  18. I’ve learned to look at life as a new adventure, instead of letting it stress me out every day.
  19. My family shouldn’t be burdened by my celiac disease, so I try to bring my own foods to events just to make sure I’m safe and not starving.
  20. Airports are the worst for living gluten-free and with celiac.
  21. Writing and blogging helps keep me sane and warms my heart when I’m able to help you too.
  22. There are no true gluten-free substitutions. Gluten free bread is not soft sourdough bread and it never will be. Gluten-free Oreos are not the ones I’ve learned to love over my lifetime an none can duplicate it either. I’m done trying to find substitutes and instead I’m learning to love new things instead.
  23. I’m proud to take charge of my health and not take no for an answer. I refused to accept that I didn’t have anything wrong with me and I was correct.
  24. I love my husband more now than ever. He has been the most amazing and supportive person through this and I certainly hit the husband lotto.
  25. I love my body more now than ever. All of it. All the problems. All the wonderful things people take for granted, I’ve learned to love and enjoy.

Comments

  1.  Sheryl Rex says:

    I have learned that ‘Gluten Guard’ meds, do NOT work on everything. It is easier just to go without.

     

    •  Rebecca says:

      What are “gluten guards?”

       

  2.  Atherton Baking Co. says:

    I’ve learned the GF is very supportive and generous. During a very low period I found Karen Morgan & Tim Lawson, they taught me how to be strong! The GF fam shares and supports all over the world! When you reach out, someone is always there!

     

    •  Rebecca says:

      I second that with the community! It is so true!!

       

  3.  Charlotte says:

    I’ve learned to be a better and more adventurous cook. I’ve learned that there is MORE to eat as a celiac than I ever ate pre-diagnosis and I was a pretty adventurous eater already even with a ton of allergies. I’ve learned to be my own advocate. I’ve learned that I have some AMAZING friends who support me and my GF life.

     

    •  Rebecca says:

      Those are awesome things! Thank you so much for sharing :)

       

  4.  Mindy says:

    I love the 25 things you have learned! Very inspirational for me! I still struggle with many things related to living with Celiac after almost 5 years of living gluten free.

    I also need to learn how to attend events without feeling so awkward when taking my own food. Right now one of my challenges is attending the service’s at church that offer crackers for the Lord’s supper practice. The preacher told me to just bring my own cracker’s. Still I dealt with a lot of guilt for awhile by not participating in the practice at church.

    I do still have days that I do not feel well mainly due to environmental allergies and other food allergies like dairy, soy, yeast and garlic which makes my eliminating other foods important.

    Am still trying to figure out how to get high protein (which of course helps the energy level) Not easy when I am not a huge meat person.

    Thanks for these wonderful comments!

     

    •  Chessie says:

      Mindy, I was diagnosed with celiac disease about a month ago (quite a shock) and I’m slowly climbing out of the deep hole of fatigue I was in. I hear you about protein, because I’ve been vegan for about a dozen years and most of the vegan “fake meats” out there are made with lots of wheat gluten. So, it’s beans, tofu, tempeh, nuts, and seeds for me. I think I can get enough protein, but it will take daily thought. It’s too bad you don’t do soy, but there are lots of other beans and legumes out there.

      Oh, how I loved stuff made with “vital wheat gluten” (i.e., deadly wheat gluten). But yeah, turns out there’s a reason why it didn’t agree with me so much.

      Rebecca, thanks for the 25 tips!

       

      •  Rebecca says:

        Chessie-

        Thanks for listing some other sources of protein! I think people automatically assume that you can only get it from meats.

         

    •  Rebecca says:

      Mindy if you eat eggs – Pasturized egg whites are a perfect way to get protein into your diet. They don’t taste like anything and are protein packed. I put them in my juice and shakes. You can buy them in larger packages which are much more affordable through places like Egg Whites International. They come frozen and then you just keep them in the fridge and use them as you wish.

       

  5.  Brittany says:

    Do you have a post somewhere explaining:

    “A gluten-free emergency supply kit is a necessity not an idea.”

    What is that?!

     

    •  Rebecca says:

      An emergency kit is something that you would want to have in case there is a disaster like a hurricane, power outage, tornado or fire. It should filled with gluten-free foods that you can consume in case you don’t have access to anything for a few days.

       

  6.  Angela says:

    Wow I had never thought about tea bags. Thanks for the tips!

     

    •  Rebecca says:

      You’re welcome!

       

  7.  Martin says:

    re12: Great to see more celiacs avoid processed food and look into the real food/paleo diet

     

  8.  Amanda Yoder says:

    Love this! So true and so relatable!

     

  9.  Kay Gaumer says:

    I’ve been gluten free since February of this year. It has be a challenge to adjust my diet. I am also allergic to dairy and most grains. I think your comment about making mew ‘friends’ and not trying to substitute gluten free products for old ‘friends’ is an excellent idea. I lean toward a vegetarian diet and buy organic and GMO free products. I also try to buy local as the products are fresher and tastier that way.

     

  10.  Sherry says:

    I am glad I found this blog. I can relate so much to what you said!

Ask Rebecca: Do I Need to get Tested for Celiac Disease?

This is a tough one for me. I believe everyone has the right to follow their own route for treatment. There are some people who can eliminate gluten, feel amazing and live on their lives as normal but I don’t think that’s the norm for this disease.

I believe if you can afford the testing or have health insurance, it is essential to get tested for a number of reasons. Hear me out..

1. You may or may not have celiac disease but I can almost guarantee you have some sort of nutrition deficiencies that can only be determined by blood work. This isn’t as simple as just taking a multi vitamin. The only way to adequately determine what vitamins you need is to get the proper blood work done to determine your individual needs.

2. Depending on your blood work, your doctor may order you to have a biopsy done to determine the level of damage caused to your intestines from the undiagnosed celiac disease. This again is something that can only be determined by a doctor.

3. The only way to determine these things is to keep consuming gluten and get your testing done. You cannot have the tests done if you eliminate gluten from your diet before your testing because the results will be skewed. So, it won’t do you any good if you eliminate gluten now and then decide in 3 months you want to get tested.

4. I’ve talked to many of you who say that you may not have taken the gluten-free diet and lifestyle seriously without the celiac disease diagnosis. This may or may not be an issue for you. For me, I can tell you that if I thought I could get away with a little bit once in a while, my situation would be very different right now because I would be eating a soft pretzel every couple of months to satisfy my needs. BUT, because I know I have celiac disease, this is completely out of my mind. I wouldn’t think of is.

5. Fertility problems are a major issue with people who have celiac disease. If you plan on having children or are struggling with fertility now, I would recommend you get tested ASAP for celiac disease. I would hate to see anyone not get tested, go through infertility treatments, only to find out they could have solved the problems strictly by living a gluten-free diet and managing deficiencies.

6. There is potential for undiagnosed celiac disease to cause other major health problems as we grow older and even contribute to bowel and other cancers. This is something for you to be aware of as you get older to monitor your health.

Do you have a different story? Why or why not did you choose to get tested? I want to hear about it!~

Would you know if you had a vitamin deficiency?

vitamins

Would you know if you had a vitamin deficiency?

Is it preventing you from healing?

I will admit. I hate taking my vitamins. I’m not very good and remembering them and of course this weekend, I’m out-of-town and they are sitting on my kitchen cupboard at home. I’m deficient in several different things and need them to feel at my prime, so why can’t I get used to taking them?

While celiac disease can’t be cured with a pill or a prescription, the secondary symptoms caused by vitamin deficiencies can be helped by using supplements. I go regularly to have my blood checked and am actually due to go this week prior to my check up appointment next week with Dr. Auckerman. He is actually retiring and this will be my last appointment with him, which I’m pretty sad about.

Here’s what I will tell you and suggest. If you are diagnosed with any kind of auto-immune disease, I believe you should get your blood work done 1-2 times a year to make sure everything is running like a well oiled machine. It’s important to get accurate measures of your levels to know what dose of the supplements you should take that’s individualized for your body. There are some significant deficiencies that are caused by bowel disorders and by adding these supplements into your daily regimen, you can help your body heal.

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Let me tell you what vitamin’s I take 2x per day. I preface this comment by saying I am not recommending these for you, I am simply explaining what I’m taking and why. It’s important to visit your doctor to have your own levels tested and get the appropriate amounts for your body. I’m not a doctor, I’m just a celiac patient and blogger sharing my experiences with you.

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Magnesium – Some of the symptoms of magnesium deficiency include dizziness, muscle cramps, muscle weakness and fatigue. I’d say these symptoms are some of the #1 questions I get asked about with Pretty Little Celiac. I take Cal Mag-D and Magnesium Citrate from Powder City 2x a day. One in the morning and one at night. Be careful with how much and what brand you are taking because they can cause you to have runny poo and very strange smelling bathroom experiences. If you think this could be a problem, ask your doctor to have your levels checked next time you are there! Are you looking for some natural ways to get magnesium into your body? Add lots of leafy green veggies into your diet. Almonds, cashews and soybeans are also natural carries of magnesium but I realize many of you can’t have these items.

Want some more reasons to take magnesium? How about that it helps to alleviate gastrointestinal distress? Or it can help you maintain your blood sugar levels? Or that it helps maintain and healthy heart and bones.

Read this fact sheet from the National Institute of Health on Magnesium!

Vitamin D – You can get vitamin D from fish, fish liver oils, egg yolk and in fortified diary and grain products. But what about when you can’t eat those things or are very limited? Most people in our country have a Vitamin D deficiency. I take 6,000 mg each day. Again the symptoms of Vitamin D relate to muscle weakness and bone pain. They can be subtle for most people but for those of us already struggling with bone and muscle problems, it can exaggerate the symptoms.

Vitamin B 12– This is one of the most important and over looked deficiencies, especially for those of us with auto-immune and bowel diseases. B12 deficiencies run rampant in people with diseases of the small intestine.  This is because we aren’t able to properly absorb it from our food. Some symptoms of B12 deficiency are being tired, pale skin, easy bruising or bleeding gums, stomach pains, diarrhea or constipation, mood changes, depression and tingling or numbness in fingers and toes. I always know when I’m not taking my vitamin’s consistently because I do suffer from the tingling in my fingers and toes. It feels like small pins and needles are poking away at my skin.

Cinnamon – This sneaky little guy could help you regulate your blood sugar, reduce LDL cholesterol levels and  reduce inflammation. My doctor said it also can help with hunger control as a side effect of assisting with blood sugar regulation. I take 2 pills int he morning and 2 at night. He recommends take them before meals. Many of you post about Candida and cinnamon assists with inhibiting the growth of this bacteria in your body.

DHEA Supplement – This was one of the tests I didn’t know anything about until the doctor did my tests. I was deficient in testosterone which can cause problems for me as a woman. Instead of trying to explain this complicated test and process, I suggest you read this article on Adrenal Health by Dr. Marcelle Pick. She explains it very well in this article. I know many of you suffer from mood swings, low sex drive, emotional distress and depression. This could be part of the problem. I would encourage all women who continue to struggle to get tested for this. I take 20mg/day. Read more about DHEA supplements at Serenity-Station.com.

Fish Oil & Omega 3’s – Did you know there are things called Omega-6’s? They are in all those packaged, processed gluten-free foods we consume to feel “normal.” They are also causing major inflammation in your body. Eliminating Omega 6’s from your diet, is a key component to healing our chronic disease. Omega 3’s are the superstars for our body. We need to focus on getting as many of this into our body as possible. They help with everything from asthma to cardiovascular diseases. You need DHA found in fish oil for your brain. It is one of the highest concentrated fatty acids in the brain and we need it to function.  Don’t your want your brain to be a well oiled machine? I take 6-8 of these bad boys a day. I need all the brain juice I can get.

Check out this article by Dr. Mercola on the problems with Omega-6. 

Just another reason to ditch those over processed, over priced gluten-free foods!

So, my advice for you is to get tested regularly for vitamin deficiencies to maximize your body’s ability to heal and fight off other problems that may occur. I can’t tell you what to take or how much to take, but I will tell you to go get tested! Any doctor can test for these and will know how to help you supplement for them. You don’t need to find a specialist unless your levels are way off and they refer you to a endocrinologist.

I’d love to hear your feedback! Tell me what vitamin’s do you take? Have they helped?

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Comments

  1.  Mindy says:

    Hello,

    Thanks so much for sharing! I have struggled with what to take for the 5 years since I became sick and diagnosed. The doctor had me on Vitamin B12 for the first year. I now only take a multi-vitamin a day which also has the Omega-3’s included. May be time for a change though since my energy level still has not picked up. The only time I have a burst of energy is after a good meal of protein. Otherwise I am sluggish.

    I am still a bit confused about how much Vitamin D to take. I recently heard that too much (over 2,000mg per day) is too much.

    I would like your feedback on this multi vitamin to see if you think it is a good product. I picked it because it is gluten free. I do have to get it by mail order. Here is what I take per day too.

    Pro-Biotiks brand (Gluten free Bio-35) http://www.pro-biotiks.com
    Jarrow Formulas – L-Glutamine 113 grams (heals stomach) this really worked after my biopsy
    Jarrow Formulas – Milk Thistle
    Sundown Naturals – Vitamin D3 2000 i.u

    I have also begun taking :
    Instaflex (for joint flexibility)

    Look forward to hearing your opinion.

    Thanks!
    Mindy

     

  2.  Laura says:

    Hi,
    Thanks for sharing this. The doctors (gastro, gyno, & general MD) that I go to never test my vitamin levels unless I specifically ask for them. I wonder if I should be seeing a Naturopathic type of doctor in addition to my regular docs to regularly test me for those.
    My recent tests showed that I am low in B12 & D, & was wondering how much B-12 you take per day and what form do you take it in? (sublingual or chewable tabs?) I’m also curious how deficient you are in vitamin D to be talking 6,000 IU per day? (I’m only taking 2,000 IU)
    Lastly, how many mg of the cinnamon do you take per day?
    Thanks!

     

  3.  Christina Nelson says:

    It was my “Very Low” Iron that finally had me take a hard look at gluten as an issue, even though I’ve not eaten red meat in 20 years. My doctor advised me to take Iron and B-12, even though my B-12 levels were “within normal range,” but they were in the lower third of that range. I’ve taken both sublingual and regular B-12 or B complex. If you have a severe absorption issue, sublingual can really help jump start you; I like the Trader Joe’s version with stevia.
    I had leftover Vitamin C and that helps iron absorption, so I added that and a general multi-vitamin that I’d taken intermittently for years. Since a lot of people are deficient and I avoid the sun, I added Vitamin D (also recommended for depression). I’d been thinking about Fish Oil Omega-3 for a while and finally added it after other recommendations for both depression and ADHD, as well as heart health. More recently I added Primrose Oil for PMS symptoms for the PMS week, and it seems to help my symptoms.
    I use a large Sunday- Saturday pill case and several smaller reusable pill cases so I have the vitamins with me. I have a hard time remembering also, especially since most need to be taken with food and I don’t always eat enough at a “meal” to take them (a yogurt or smoothie may not be enough). I also have a probiotic, but it’s in the refrigerator so I forget that even more often, but can at least add it to a smoothie. My previous probiotic didn’t require cold storage so I had it with my morning medications which is a more reliable routine.
    When I’m on top of my vitamins I feel so much better! I feel like I’ve finally gotten some energy and can be more productive. If I forget my vitamins all week, I feel more sluggish, unable to get up and grumpy. A good week is when I take them most days and a great week is everyday. I’ve experimented a bit too and am better WITH the B-complex in the mix. Everyone’s different! We have to find what works for us.
    Next appointment, I’ll ask for a vitamin panel; They rarely offer it. But especially with things like Iron and some fat-soluable vitamins or minerals, you CAN get too much! (I know Vitamin A and zinc are two.)

     

  4.  Orthomol best multi vitamin says:

    You have hit the mark, in it something is also to me it seems it is very good idea. completely with you I will agree. vitamin d12 Orthomol

Coping with Celiac Disease: A Therapist’s Perspective (Podcast)

Coping with Celiac Disease: A Therapist’s Perspective

When I was first diagnosed with this disease, I didn’t understand it and struggled to figure it out. Some of you are there now and are looking for help or some of you think you have it figured out but maybe just need to hear something new. I invited Jummy Olawale on my show to talk about the most common struggles associated with celiac disease ( besides the food!).

I’m so glad I decided to do this. Her insight is poignant and dynamic. She really gives inspiration and hope along with tips and suggestions for dealing with this disease. She’s doesn’t have celiac and isn’t a specialist in the disease but really can provide some help for those of us needing help. If you feel out of control or like you lost your footing, this is the perfect place to start.

Here’s a little snippet of what we discuss on the show:

1. What are some coping skills to use when someone goes through a major life change like celiac disease? When everything in your life as you know it, changes in an instant? How do you handle the sense of feeling alone and like a hypochondriac because no one else understands the complexity or the seriousness of the disease?
2. What are some coping skills for handling all these emotions? Sometimes we can have other life issues going on and this is just a huge burden on top of the lemons life throws at us. Especially when you have a bad day and just want to go home, order a pizza and lay around all night.
3. What’s the best way to explain a disease like this to husbands, family, kids and friends? How do you get them on board with helping you instead of constantly minimizing the disease and asking you to just “try a bite because it won’t kill you.”
4. How do you handle the disappointment when family and friends (or your spouse) doesn’t sympathize and isn’t as supportive as you think they should?
5. Marital problems – Handling a non-supportive spouse – what do you do? When your spouse is the only one that understands, how do you find other outlets to cope instead of stressing them all the time.
6. Changing you mindset of food being pleasurable and instead of thinking about it as fuel. People get so upset that they have to eliminate all the things they love that are poisoning them. When they get poisoned, they beat themselves up and get mad at their bodies for betraying them.

On The Air with Pretty Little Celiac is also on iTunes! You can just search “Pretty Little Celiac” and subscribe to it and all the episodes will feed right into your player!

Want to know more about Jummy Olawale?

Jummy Olawale is a dynamic speaker, life coach, Licensed Professional Counselor, Pastoral Counselor and Licensed Chemical Dependency Counselor with extensive international and multicultural life experience and education.
Biography

Jummy was born in Nigeria, Western Africa where she lived and attended elementary and secondary school. She migrated to London, England where she completed her High school and college education. She earned her Bachelor of Arts (BA.) degree in Psychology and Natural Science from Canterbury Christ Church University College, Kent. After getting married, she migrated to the U.S. where she now lives with her husband and their two children. Jummy earned her Masters of Arts (MA.) degree in Counseling Ministries from Methodist Theological School in Ohio.

Jummy utilizes narrative therapy, cognitive behavior therapy and motivational interviewing approaches. She specializes in individual, couples, and marriage therapy, multicultural counseling, parenting support, career coaching and life coaching.

 

47 Gluten Poisoning Symptoms

47 Symptoms of Gluten Poisoning
47 Symptoms of Gluten Poisoning

We’ve all been there and done that… The unfortunate incident when you accidentally consumed gluten and now are suffering the consequences. It’s a horrible experience for most of us, especially if you are very sensitive to gluten and have celiac disease.

But, your celiac is not my celiac and we all respond differently. I’ve noticed I don’t respond the same to malt as I do to wheat. Sometimes I get diarrhea and sometimes my joints swell instantly. It seems I never know what I’m going to get when I accidentally eat gluten. Needless to say, just because I blog about it, speak about it and educate about it – it doesn’t make me immune from it! It happens to the best of us. We let our guard down for just one minute or allow assumptions to rule our decisions and it happens. For me, it doesn’t happen too often, but it still gets me!

If you are looking for help after the fact. I did a blog post on recovery tips that my readers came up with also on Facebook!

So, I took a poll on Facebook and asked my readers what symptoms they experience when they accidentally consume gluten.

Here is a huge list of 47 poisoning symptoms they suffer from after consuming gluten.

  1. Extreme fatigue
  2. Joint pain
  3. Swelling
  4. Bloating
  5. Clothes don’t fit
  6. Abdominal pain
  7. Extreme thirst
  8. Brain fog
  9. Gas
  10. Irritability
  11. Flu-like symptoms
  12. Skin rashes
  13. Nausea
  14. Heartburn
  15. Vomiting
  16. Intestinal cramping/severe urges
  17. Heart attack feeling
  18. Dizziness
  19. Anxiety
  20. Restlessness
  21. Ringing in ears
  22. Vertigo
  23. Heart palpitations/irregular heart beat
  24. Extremely emotional
  25. Joint pain in fingers similar to carpal tunnel
  26. Concentration problems
  27. Sweating/Cold Sweats
  28. Depression
  29. Gums ache
  30. Weight gain
  31. Eczema
  32. Pimples
  33. Aggrevates other symptoms from other diseases like arthritis or PCOS
  34. Mouth Sores including canker sores
  35. Puffiness in the face
  36. PMS symptoms
  37. Cravings for more gluten filled foods
  38. Dermatitis Herpetiformis outbreak
  39. Sinus pain and running nose
  40. Migraines
  41. Swollen ankles (edema)
  42. Shortness of breath
  43. Numbness in limbs, tingly sensations
  44. Acid Reflux
  45. Constipation
  46. Raging Anger and Severe Mood swings
  47. Swollen tongue

For me, I typically get joint pain and swelling along with bloating immediately after eating gluten. Then my stomach starts to hurt, a painful hurt and I can feel a headache slowly coming on, almost like torture.

Most people mentioned the symptoms can last anywhere from a few days to a few weeks. It isn’t an easy fix. It’s quite a different experience for me than when I have lactose. That just puts me in the restroom and then I’m fine. The other symptoms don’t come along with it like gluten poisoning. So, it’s up to you to figure out what affects you the most and what to really avoid. For those of us with celiac disease, we don’t have a choice, we must avoid gluten at all costs.

Listen to my first Pretty Little Celiac podcast episode!!!

If you have celiac disease or are living gluten-free, you know how tough it can be emotionally in your life. From food choices to random health ailments, this can be one of the most difficult times of your life. Let me guide you though this challenging component with stories of my own struggles and a question and answer session with you!

I’ve struggled with anxiety, depression and sadness which I’ve been blogging about for a while now. It’s time to take it a step further and engage with everyone on a more personal level.

I can help you make the transition to a happy gluten-free lifestyle.

Gluten Poisoning at the Ballpark – Redd’s Cider

Redd’s Apple Ale is Not Gluten Free
Redd’s Apple Ale is Not Gluten Free

Gluten poisoning. I did not miss you.

I’ve been doing so great without you. No hassles. No problems. Just living my life like you didn’t exist.

Bam.

That’s when it happens.

We went to the Cincinnati Reds game and usually I get an awesome fruit plate and a giant bottle of water during the games and we go out to eat after. While we were in the little United Dairy Farmer shop at the stadium, I scanned the beer section looking for something to have.

Redd’s Apple Ale. How cool, they added an apple cider to the mix. “Exceptionally Crisp Apple Ale” said the can – Okay sweet! I scooped one up for $11 and we went back to our seats.

A few innings into the game, my fingers started swelling to the point where I had to crank my wedding ring off my finger. It was so painful! The ring was completely surrounded by bloated finger flesh. We were in the sun, so I assumed maybe it was because of that.

Then I posted a picture of it online and had a few comments that they couldn’t find that it was gluten-free. So of course, when I looked, I saw it is a regular beer but an apple ale.

I’m the first one to admit I screwed up. I should have known better. I looked at every other product in the stadium that I ate to be sure I could eat them. But, I just assumed it was gluten-free. If anything, always learn that you can’t ever assume! Always research.

HOWEVER…..

I would like to point out that the can had a giant apple on it and the marketing of the can looked very much like apple cider ale’s I’ve had before that are gluten-free. It was easy to mistake this for a regular gluten-free cider because of the packaging. Go to their site at http://www.reddsapple.com and tell me if you think it’s a beer!

But I’m poisoned. So, now what?

What I’m finding interesting about this gluten poisoning incident are my symptoms are not stomach related at all. I did get bloated but had absolutely no gas or intestinal distress. My joints blew up like crazy and are stiff now, which affected my dexterity while playing Bejeweled Blitz on the drive home from the game. I can also feel some nerve ending problems on my skin all over my body, like pricks. But, I noticed my ear canals are aching, very similar to when my allergies are acting up. I can feel how tender they are when I rub them and they just are getting very uncomfortable. It’s also funny because I have what I like to call a gluten skin patch. It’s in my right elbow and I get bumps on it whenever I eat something with gluten. It doesn’t happen often, but when I get a rash there, I know something was off during the day.

I’m just baffled at the lack of stomach problems. Could my stomach be healed after almost 1.5 years? Could a strong, healed stomach reduce the intestinal symptoms of gluten poisoning? What do you think?

So, for now I will drink a ton of water, take a nice hot bath filled with epsom salts and lavender oil, pop 2 Tylenol arthritis and hope for a good night sleep. Tomorrow will be a better day, the effects will wear off but I will have it hot on my mind the next time I want to try something I’m not sure of, like a new drink.

My celiac gluten patch
My celiac gluten patch

 

Celiac and Premature Gray Hair

Celiac and Premature Gray Hair
Celiac and Premature Gray Hair

I got my first gray hair when I was a junior in college.

I was 21 years old.

At 24, my roommate used to sit on the couch and pluck my gray hairs out while we watched tv. If someone peaked in on us they probably thought she was combing lice out of my hair. I wanted them gone. There weren’t that many but enough to drive me crazy.

Fast forward 10 years later and I have more gray hair than I ever imagined. I absolutely love being a dark brunette but the gray’s show so much more prominently when my hair is dark. This means I need to get it touched up every 4-5 weeks instead of 6-7 if I had highlights.

I don’t mind getting my hair done, I really love being in that chair. If I ever became famous, I would have no problem doing my make up but I would have a team of hair professionals following me around to make sure it always looked great. I wish I knew how to do more with my hair.

Anyway, I started researching a link between celiac and premature graying. There was a study done in 1980 by a British researcher that found  patients who lived with undiagnosed celiac disease suffering from premature graying had a reversal in the amount of gray growth after living gluten-free.

In the book, Living Well with Hypothyroidism, it states that people who are left-handed and have premature graying are at a higher risk of autoimmune diseases. I can’t find the cited source online for this stat but I found it extremely interesting. I am not left-handed but I certainly do have premature gray hair.

A B12 deficiency is also a cause for premature gray and often the deficiency is caused by bowel disorders like Chron’s disease and celiac disease.

I have noticed in the past year that my hair and nails are remarkably better after being gluten-free and my gray hairs are still there but they do not appear to be growing at the rate previous to diagnosis.

So, while there is no official link between celiac and gray hair – there seems to be quite a bit of people on celiac forums talking about the subject and saying their grays improved on a strict gluten-free diet.

Do you have experience with premature gray hair? Have your symptoms improved since your diagnosis or going gluten-free? Please share your story below!