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.

Gluten Free Open Face Burger Recipe with Chebe Breadstick Mix

open-face-cheesy-cheeseburger-300x199
Gluten Free Open Face Burger

I love Chebe. I mean it, I really love Chebe products. It has become a staple in our house when we are craving pizza, bread sticks, cheese balls or whatever other doughy need we might have one night. Imagine my delight when I came home from a long day at the gym to find Aaron made these little treats for dinner!

I know its a lot of carbs but sometimes you just need a little carby indulgence after a long day of work.

So, you want to try to make these for dinner?

Here’s what you are going to need for my Gluten Free Open Face Burger

Ingredients:

1lb of Grass Fed Beef

1 Egg

3/4 Cup of gluten free bread crumbs (we use Tall Papa’s)

2 tablespoons of coconut oil

2 tablespoons of olive oil

3 minced garlic cloves

1 Box of Chebe Breadstick Mix

1-2 cups of marinara sauce

4 slices of cheese (we used mozzarella)

How to assemble!

1. Follow Chebe directions on box to get the dough ready and then flatten into round pods. Heat oven to 350 degrees and bake for 10 minutes. You want them to be about the same size as the burger patties. So however large your burgers are, that’s the size of the bread bottom. Brush the dough with some coconut oil before baking and putting on a nonstick pan in the oven.

2. Mix the ground grassfed beef, egg, breadcrumbs into a bowl. Shape into 4 patties and cook on low heat with coconut oil in a skillet or other frying pan on the stove. Cook to your desired temperature.

3. You want the burgers and the bread to be done at the same time!

4. Take the roll out of the oven – top with the burger patty, slice of cheese to your liking  (we used mozzarella) and some red sauce on top. Cook for about 5 minutes to melt the cheese and heat up the marinara sauce.

5. Take out and enjoy!

Gluten Free Open Face Burger
Gluten Free Open Face Burger

**I am not sponsored, paid or given product by Chebe. I genuinely love their products. They are the greatest thing we’ve found since going gluten free.**

 

Do I have celiac diease? Preparation and questions for your first doctor’s appointment.

img_3129

So, you’ve read my post about finding a doctor and now you are ready to make your first appointment! Congrats, that is the first step in getting answers for whatever has been plaguing you for years. I am not a medical doctor and do not understand the complexities of testing and diagnosis for celiac disease on the back end, so I am not going to post what type of medical tests you should ask for or have done. I will post links at the bottom of the post from other credible websites for you to review.

Here are my suggestions and tips for getting the most out of your initial doctor’s appointment for gluten intolerance and/or celiac disease.

Before making an appointment:

1. Find out if your doctor actually has experience treating and diagnosing celiac disease or other gluten related problems. There is no point in going to see a doctor who doesn’t specialize or isn’t familiar with these issues. You are just wasting time on getting answers.

2. Ask how long you will have for your first appointment. My doctor allows 30 minutes for a first appointment and 15 for follow ups. Don’t waste your time with the doctor chit chatting!

3. Prior to your appointment, write down all of your symptoms and chronicle your medical history. This will be much easier to show your doctor and review than sitting there trying to think of them all and realizing you didn’t bring up important ones after you already left.

4. Get your medical records from your other doctors sent over to the new one. You will need to sign a medical release of information and might have to pay a fee but it will be worth it for the new doctor to have all your information in one spot.

5. Know and chart your family medical history. Again much easier than trying to remember it all in a 30 minute appointment.

6. Write down every single prescription medication, over the counter medication, supplement and vitamin that you take. Include all the doses and schedule for each of them. Even ones you might be embarrassed you take like an over the counter weight loss pill.

7. Write down why you think you have celiac disease or problems with gluten.

8. DO NOT change anything about your diet or lifestyle prior to going to the doctor and having tests done. This is essential for finding out what is really going on. You have to get an accurate picture of your body condition in order to diagnose.

9. Understand there is no pill or medication for celiac disease if you do in fact have the autoimmune disease. The only way to manage it is with a gluten free diet.

10. Don’t panic or come to your own conclusions prior to going to your appointment. Be educated on your history, your body and yourself to provide the doctor with the exact picture of what is going on. This is the BEST way to get an accurate diagnosis of whatever is upsetting your body.

Questions for your doctor at your first appointment:

1. How do you diagnose celiac disease? What blood tests do you run? Do you test for the celiac genes? Will you want me to get a bowel biopsy? This past year I’ve realized doctors have so many different ideas of diagnosis. I’ve heard one speak about biopies being the only way to tell and others say genetic presence with condition improvement upon removing gluten are just as acceptable. It’s important to understand your doctor’s beliefs and thinking on the diagnosis component.

2. How quickly does you lab turn around results and when can you make your next appointment.

3. Do you provide aftercare, follow up blood tests, recommendations for support groups in the area and additional help?

4. If I don’t have celiac disease, what other conditions could I have with the symptoms I’m experiencing?

5. Can you refer me to a registered dietician specializing in celiac disease?

6. How often will I follow up with you after my original test results?

7. If I have nutrient deficiencies, what is you protocol for treatment?

8. What other tests should be run along with the celiac disease testing?

You know I love your feedback – Post below for others to see if you thought of things I missed!!

Websites for celiac medical tests:

 

http://www.csaceliacs.info/diagnosis_of_celiac_disease.jsp

http://www.cureceliacdisease.org/living-with-celiac/guide/diagnosis

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

 

Social House – Aria Hotel in the Crystals Mall

Social House – Aria Hotel in the Crystals Mall

The restaurant was dark and decorated in red and black colors throughout. It would be a great place for an intimate dinner with a significant other. I would not recommend for families or people with children.

This sushi restaurant was a bit on the pricey end but completely worth every dollar spent!
Imagine my comfort level when our waitress explained she also struggles with a gluten intolerance and was well aware of how to prepare the foods and when to check on items to make sure I was safe.

She answered all my questions about the menu and made me feel extremely safe about eating there. When I had questions she didn’t know the answer, she immediately went back to the kitchen to ask the chef to ensure I was staying gluten free!

I decided to try the most expensive roll in the place – it had gold flakes on it! Kobe beef, king crab and yellow fin were some of the meats in this roll. It tasted like magic. I loved it and every single thing about it was phenomenal. I hadn’t spent a lot of money so far on food during the trip so I decided to take a splurge.

IMG_4629-300x224

We also had roasted mini potatoes that were seasoned so perfectly and roasted to the greatest crispiness ever that we were all fighting over them at the table.

Everyone at the table enjoyed different sushi rolls that were each equally delicious in their own way. (or so I was informed by the non-celiacs)

If you are in Las Vegas looking for a unique, delicious dinner and aren’t worried about the price tag – I would highly recommend Social House for dinner.

IMG_4626-300x224

IMG_4625-224x300

IMG_4624-224x300

Check it out on www.FindMeGlutenFree.com and don’t forget to write your own review!

 

Maggiano’s – Fashion Show Mall

I’ve written about Maggiano’s in the past but wanted to give it another try to see if they are consistent among the chains with gluten free menus and education of their staff.

Sure enough, the waiter was very familiar with gluten free options and provided me with a description about what could and couldn’t be made gluten free. I settled with the pasta dish I always get and it was delicious.

I do struggle with their Caesar salads though. Not sure if it’s the lactose in the dressing or preparation of the salad but I stopped getting them there. –

It was nice to not spend over $25 on a meal for once during this trip.

This chain really does gluten free right!

 

Border Grill Gluten Free Menu
Border Grill Gluten Free Menu

Border Grill – Mandalay Bay

Our last night in Las Vegas, we decided to take a stroll over to Mandalay Bay and have dinner at Border Grill. This place was highly recommended on the gluten free sites and showed on their website to have a dedicated gluten free menu, so needless to say I was pumped to check it out.

The hostess was not very friendly. I gotta say that I am a stickler for happy, positive employees because they are the face of your business and crucial to customer satisfaction.

I was pleased to see such a large gluten free menu until I opened it and realized 2 of the pages were filled with alcohol choices.

We decided to try the Queso Fundido, which they brought out with corn tortillas and the chips are gluten free there. The dip was pretty tasty for sure but it didn’t knock my socks off.

Our waiter was aware of celiac disease and gluten free preparations so that made me feel at ease too during our time there.

I ordered a shrimp and rice which came out on a plate filled with rice and then a strip of shrimp down the middle. The rice was in a pool of liquids making it a bit soggy. I have to say that I can’t stand wet rice so I just ate the rice off the top and picked at the shrimp. The dish was disappointing and I didn’t leave there feeling like I had an amazing gluten free dish coming from somewhere that specifically has a gluten free menu. The cost of my 10 small shrimp and rice was also $28 which I found to be completely out of line for the quality of the dish.

Now, had that dish come out and completely wowed me, I wouldn’t blink at spending $28 on vacation in Las Vegas for dinner. It just didn’t do it for me so I can tell you I won’t likely go back on my trip to Las Vegas next year.

I would recommend Border Grill because they are educated and understand gluten free meals but I’m not sure it would be my first pick for someone. It’s the safe choice.

Have you been here? Make sure you write a review on FindMeGlutenFree.com – I Did!

IMG_4653-300x224
Gluten Free Shrimp Meal
IMG_4655-300x224
My sister’s gluten free meal

 

Trevi – Forum Shops in Caesar’s Palace

Prior to being diagnosed with celiac disease, this is probably one of my favorite restaurants in Las Vegas. It always provided delicious Italian dishes with a decent price tag and a great atmosphere. I love eating outside the restaurant (but in the mall) on the cobble stone street being able to people watch while enjoying a delicious meal and glass of wine.

We decided to stop there and have an early lunch one day while out shopping around. They do not have a dedicated gluten free menu but they were able to give me several options on the menu that could be prepared gluten free. While the waiter wasn’t as confident about gluten free items, he was able to go back into the kitchen and talk with the chef about choices for me, which made me feel pretty good about eating there.

I decided on a filet and mashed potatoes. It’s probably one of the safest dishes we can eat at a restaurant without getting glutened. The steak was cooked perfectly and the mashed potatoes were delicious. I wouldn’t expect anything less from Trevi.

While they don’t have a dedicated gluten free menu, I feel comfortable in saying that folks who can’t have gluten but are able to explain and ask questions about their meal would be able to safely have dinner there without any problems.

Again make sure you are writing reviews on www.findmeglutenfree.com so we can continue to create a data base of awesome restaurants in every city!

Gluten Free Review – Cooper’s Hawk Winery & Restaurant

Cooper's Hawk Winery
Cooper’s Hawk Winery

Cooper’s Hawk opened at Easton Town Center in Columbus on Monday this week. Imagine my excitement when I saw they offered a gluten-free menu and my first thought was “I have to try it immediately.”

So by Wednesday, I was eating there for the first time. Check out the size of this gluten-free menu….

They even have 5 gluten-free desert options!

Gluten free menu
Gluten free menu

I told our waitress about my gluten allergy and she made sure the kitchen knew I was there. They brought out the pretzel bread for my dinner date and a gluten-free bun for me to try.

We started with an appetizer of shrimp wrapped in bacon – delicious. The shrimp were large and I easily got 2-3 bites out of them.

Dinner was the pepper jack, bacon cheeseburger – the bun was a little much for me since I already had one when we first got there so I ended up eating the burger naked. There were several sides I could select from and I ended up with Mary’s mashed potatoes.

gluten free cheeseburger
gluten free cheeseburger

I got a gluten-free brownie to take home and shared it with my husband. It was simply delicious. Light, fluffy and moist!

The manager even came out after my meal to make sure everything was ok and I enjoyed my meal. He explained the gluten-free process and that they are very sensitive to cross contamination and pride themselves on making safe gluten-free experiences for their guests.

My new favorite wine
My new favorite wine

After this tasty meal, I decided to bring my family last night to try something new on the menu. They’ve already been to all the places around us to eat so it was a great change for them to try something new.

Last night’s meal blew the lid off of any other gluten-free meal I’ve had at other places. Wildfire Chicago is a close second to this dish.

I decided to try something totally new and went with the short rib risotto and it was best decision I’ve ever made. The meat was tender, moist and fell apart with my fork into the risotto. The sauce was incredible and the truffle oil on top with parmesan shavings tied everything together perfectly.

Short Rib Risotto Cooper's Hawk
Short Rib Risotto Cooper’s Hawk

We ended the meal with some chocolate covered strawberries. They were ok, not the best but then again it’s hard to compete with Godiva strawberries. I just didn’t think they were ripe enough before being covered in the chocolate.

I do have one comment about the restaurant – we had reservations at 7:30pm. While we didn’t wait longer than 5 minutes for our table, imagine our confusion when they were quoting people a 2-3 hour wait for a table and then there were at least 10-15 empty tables in the dining room when we were seated. Maybe it was lack of staff, but it was strange in my book.

You can find my review online at www.findmeglutenfree.com so I suggest you check it out and add your own!

The easiest gluten free chili recipe ever!

Gluten-Free Chili Recipe
Gluten-Free Chili Recipe

Everyone loves a great chili on a cold winter day or to celebrate the big game, but what do you do when all of the seasoning packets contain wheat? Well, I’ve tried several and finally found one that tastes great and helped me make a delicious gluten-free chili that can be eaten right away or frozen for the next time you need a warm, wholesome meal.

I wanted something super easy that I could just throw in the pot and wait for it to finish. That is exactly what I got with this recipe! I hope you enjoy it as much as we did!

Here is my recipe for super easy gluten free chili

What you need:

1-2lbs grass fed ground beef

2 cans or the equivalent of fresh kidney beans

2 cans of gluten free fire roasted tomatoes

1 can of gluten free tomato sauce

1 onion

1 green pepper

1 gluten free chili sauce packet like Hol Grain Gluten Free Seasoning

How do you make this deliciousness? So. Easy.

Brown the beef in a pan and then transfer to a large soup pot or crock pot

Cut up the pepper and onion to the size you like – I prefer the pieces smaller

Put the beef, kidney beans, tomatoes, tomato sauce, onion, pepper and sauce packet into the pan together

Wait for about 3-4 hours on low heat and then devour

The smell alone in your house is enough to make you drool!

Want to fancy it up? Add some bacon, hot sauce, hot peppers, sour cream, garlic, more veggies, cheese, gluten free crackers!

Wildfire Chicago: Gluten Free Review (hint.. go here!)

While we were in Chicago for the Celiac Awareness Tour, we decided to stay an extra night and spend some time in the city. After a little research on a few different apps and websites – both Yelp and FindMeGlutenFree recommended Wildfire for dinner.

I’m notorious for making reservations before we go anywhere because I am so impatient and hate waiting in a crowded little area for a table. So I frequently use Opentable.com to secure a seat before leaving the house. The only times available were 5:15pm or 9:30pm. We decided on 5pm because we hadn’t really eaten lunch due to being at the convention.

When we got there, I asked for the gluten free menu. Everyone was very accommodating – Check out this gluten free menu!!

Wildfire gluten Free Menu
Wildfire gluten Free Menu

Are you kidding me? Was I dreaming? I hit the gluten free Chicago jack  pot. Since we were there and they had this great menu – we were definitely going to try some stuff.

One of the things I miss is being able to order an appetizer occasionally. All of them are usually fried but I really enjoy having a snack before my meal comes.

We decided to try the baked goat cheese. OMG – it came with gluten free pita chips that were to die for.

img_4100
Wilefire baked cheese and gluten free pita chips
img_4102
All Gone!

After looking at the menu – we both decided on a nice juicy cheeseburger on a gluten free bun. How often do I get this? Never so I certainly was going to go for it! Aaron even decided on a gluten free burger with me! They were delicious. The bun tasted great. The burger was delicious with no gluten filled fillers – cooked to perfection!

Wildfire Gluten Free Burger
Wildfire Gluten Free Burger

Then we shared sides of a sweet potato and a twice baked potato. Totally fantastic as well. Enough for 3 people each!

Wildfire double baked potato
Wildfire double baked potato
Wildfire Sweet Potato
Wildfire Sweet Potato

The entire time we were dining – our waitress continued to come back and make sure everything was ok. If I had a question about something, she checked with the chef or the manager and came back to tell me what she found out. I’ve never felt so safe dining out! There needs to be way more gluten free menu restaurants like Wildfire!!

During the meal I enjoyed some wine and they even brought out a gluten free (hot and fresh) bun to eat while Aaron had his regular bread!

I give Wildfire Chicago – 2 HUGE gluten free thumbs up and highly recommend it for someone gluten free looking to eat a delicious meal in Chicago!!

His and Hers bread. lol
His and Hers bread. lol
My 4 new friends.
My 4 new friends.

 

 

Food Addiction? What is wrong with us? Changing the way we think about food.

foodaddiction

I posted on Facebook yesterday what foods people missed most from their gluten free lifestyle. The purpose of this post was to see what types of food I could play around with or find as a great substitution for what everyone was missing.

54 People commented on my post and the comments as I read through them disturbed me. I completely understand that we miss bread, pretzels, beer etc but some of the things that people wanted to have so desperately are part of the problem in society.

I recently spoke to an Ohio State University group called CHAARG -Changing Health, Attitudes, and Actions to Recreate Girls – They came to Bexa Body Fitness for a group fitness sampler and a little seminar on healthy eating in college. I spoke to them a lot about food options and ways to make better choices when eating on campus.

I can’t emphasize to people enough at my fitness studio:

  • If the ingredients look like they should be on a shampoo bottle you probably shouldn’t be consuming them.
  • There is nothing FRESH about Subway – Their lettuce is out of a bag and their meat is as processed as you can get. The sandwich is entirely bread and why do you always smell when you leave there?
  • I’ve never met anyone in my life that told me they were addicted to carrots, sweet potatoes or steak. I do however on a daily basis meet people that can’t give up artificial sweetener, diet coke, candy, sugary coffee drinks etc. What does that tell you about those foods and how they are reacting in your body? Your brain is addicted to these substances and no one seems to think this is a problem.

The list of foods people missed goes something like this:  Pizza, biscuits, donuts, pie crust, pizza, flour tortillas, bread, pizza, twizzlers, crackers, hot dogs, Subway, Arby’s, pizza, McDonald’s, funnel cake, Ciabatta bread and so on….

ON TOP OF THIS – I see an incredible amount of children and teenagers also addicted to these foods.

I believe that when people think of food addictions, they think of the television shows on TLC about people being cut out of houses or Extreme Makeover Weight Loss edition. But, we are all addicted to food in some capacity. Some people are able to handle it better than others but very few people recognize the problem/trend in our society.

Our society pushes low fat, low sugar, no fat, no sugar, low cholesterol and anything else with “low” or “no” in the front of it.

Do you know how those things get to be that way? They pump the foods filled with chemicals and fillers so they taste great and food us into believing they are healthy or good for us. They aren’t. Our brains are so fooled and duped into thinking all food should taste this way that eating a nice whole meal of protein, potatoes and veggies is like eating cardboard.

All of us that can’t eat these other foods and desperately long for them are proving my point. We are just replacing these junky gluten filled foods with junky gluten free foods. While it is fine once in a while, it is not ok all the time. Moderation is key but when options are so limited, I’m finding it much easier to go overboard on gluten free foods.

I’m absolutely not saying that I don’t fall into this trap. There are certain things I know I miss desperately and would love to have again. There are foods filled with gluten and gluten free that I know I can’t keep in our house because I won’t be able to keep my hands off them.

But I understand now how all this affects my brain chemistry. I realize how screwed up our society is to see that eating “I can’t believe it’s not butter” is better than eating regular butter. Do the research. Butter won’t kill you but I’m pretty sure whatever the hell is in that fake butter will.

We are the fortunate ones. We can’t eat that crap or we get sick. We are the ones that have the opportunity to heal our bodies and wean ourselves from the stuff we once knew.

If you get anything from this post, it might just be the 3 bullet  points I posted above and you might just think of a shampoo bottle next time you check out ingredients!

But I challenge you to think about these things the next time you are longing for a brownie or piece of pizza.

 

PLC 30 Day Gluten Free Challenge – Important FAQ’s

30 Day Gluten Free Challenge
30 Day Gluten Free Challenge

I am completely over whelmed, honored and excited at the response for this challenge!! A couple of quick things based on emails and question’s I’ve received since the initial post….

  1. You do not have to eat the protein or dairy items. You can make some substitutions and I’ve also included a list of vegetarian protein sources on the Facebook Group Page.
  2. You do not need to actually complete the competition part of the program – you can do it on your own, with us or enter the competition. It is completely up to you!
  3. You do not have to have celiac disease or a gluten intolerance to do the program! If you want to give a try – that is awesome!!!
  4. We are starting the challenge on 10/22/12 but you can do it whenever you want! Just the part with the competition is officially starting. You can get the plan without competing.
  5. The workouts can be done at home or at the gym. They are quick, intense and get the job done.
  6. I am not a nutritionist, doctor or RD. This is a basic gluten free plan based on my own personal knowledge and experience in the fitness industry. I am a certified personal trainer and group fitness instructor, business owner, lifestyle coach, fitness competitor and personal weight loss story person.
  7. You can find the 30-day plan and other materials on the FACEBOOK group page – once I figure out how to get it as an easy download thing on my blog – I will add that too. Just waiting to get my new fancy schmantsy blog up and running!!
  8. Let’s have some fun.

I started a Facebook Group page for us to hold each other accountable, post our goals, interact with each other and become our own little community!!! Join here

 

Gluten Free Make Up – Hidden Ingredients and Recommendations

makeup

I LOVE make up. Not wearing a lot of it and looking like a clown loving it, but normal have fun with it love.

Dr. Aukerman provided a list of ingredients that could indicate wheat or gluten:

hydrolyzed malt extract

hydrolyzed wheat protein

hydrolyzed vegetable protein

wheat germ

vitamin e

cyclodetextrin

barley extract

fermented grain extract

oat (avena sativa)

stearyldimoniumhydroxypropl

samino peptide complex

phytosphingosine extract

triticum vulgare

dextrin

dextrin palmitate

maltodextrin

secale sereale

sodium C8-16 Isoalkylsuccinyl Wheat  Protein Sulfonate

yeast extract

anything with wheat in the name

He recommends: Smashbox, Sephora, Avon, Neotrogena, Afterglow Cosmetics, Bare Minerals and Naturally Dah-Ling

Many of you ask me about different brands or suggestions. My only and best advice in this area is to contact the manufacturer directly and ask about their products. If you are totally gluten free and still having problems, it might be a reaction from hidden gluten somewhere else in your life!

Do you have a favorite gluten free beauty product? Let’s hear about it! Post it below so we can all try new things!!!