Gluten in Medicine Disclosure Act – Interview Congressman Tim Ryan

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Gluten in Medicine Disclosure Act

I had the pleasure of interviewing U.S. Representative from the 13th District of Ohio, Tim Ryan,

about the Gluten in Medicine Disclosure Act.

Rep. Tim Ryan (D)
Rep. Tim Ryan (D)

I am from North East Ohio and am proud to say this is Congressman Ryan’s district! Unfortunately, he was called to vote and I only had a brief 10 minutes to talk to him about the Act. But, you can listen to our conversation right here…

According to Congressman Ryan’s website,

The Gluten in Medicine Disclosure Act has been endorsed by: American Celiac Disease Alliance, National Foundation for Celiac Awareness, Celiac Disease Foundation, Celiac Sprue Association, Gluten Intolerance Group, North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, and the American College of Gastroenterology.

So,  what can you do to help?

You can call or write to your local representative and tell them you support this Act! Most of our congressmen have email addresses that you can contact them. This bill was reintroduced this year, after failing last year despite thousands of letters of support to congress. Our letters got this Act reintroduced and it’s up to you to keep the momentum by reaching out and contacting your congressmen!

Click Here to find out who your congressman or woman is to contact regarding the Gluten in Medicine Disclosure Act!

Click Here if you need help with how to write a letter to congress!

Click Here if you want to contact Congressman Tim Ryan!

If you would like a good guide about the medications, http://www.glutenfreedrugs.com/ is a great resource and website for information on gluten in medications.

Do you have a story about gluten in medications?

Do you have tips for other people that struggle with gluten in medicine at the pharmacy or getting answers?

I wanna her about it – post in the comment section below :)

 

 

Ask Rebecca: How do I convince my family to get tested for celiac disease?

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This begins my new Monday segment of Ask Rebecca! I will pick one question per week from the Facebook page, messages and email and answer it to the best of my ability! Today’s question comes from Facebook – Judy Grover!!

“How do I convince my family to get tested for celiac disease?

Rebecca: I honestly don’t think there is any good answer for this. Just like anything else, your family has to be on board with thinking they have a problem and be willing to get tested. The testing is expensive and can be challenging to get an accurate diagnosis. If there are no obvious symptoms, the person is also less likely to spend the money on getting the testing done. My mom didn’t end up getting tested until I nagged her for months about asking her doctor. Then when she finally did ask the doctor, he gave her inaccurate information because he was not educated on the disease. He told her because she did not have diarrhea, she didn’t need to get tested. It wasn’t until after I gave her more detailed information about all the possible symptoms and encouraged her to get tested again that she finally completed the test. The doctor (whose results I believe are suspect) told her she did not test positive for celiac disease and she didn’t need to be concerned. Again, I don’t know what tests were run or if they were even checked correctly. So, that’s the only thing I can go on. What I would encourage you to do is the following:

  • Become as educated as you can be on the disease to explain the importance of getting tested. Without being able to explain the importance and why you think they need to be tested, it’s going to be a struggle to get them to do it.
  • Remember that not everyone has it in your family just because you do! We are quick to assume everyone has it or should get tested for it because we are diagnosed, when that’s not always the case.
  • Keep your family updated on your own medical journey. Don’t be overbearing about it or make constant digs because it’s likely to backfire.
  • Don’t forget that as adults, we have the right to get our own testing done. It’s our own health and bodies and we should do what we feel is right for ourselves and not anyone else. Haven’t you ever had someone tell you to get tested for this or that when you were struggling with your symptoms? Sometimes the shoe fit and you asked your doctor, but other times you felt you didn’t have the symptoms so it wasn’t worth getting tested. We should respect our family’s rights to do what they see fit with their bodies. We can’t control how or what they do! The only thing we can be sure of is that we are treating ourselves the way we believe is happy and healthy.

Did you successfully get your family to get tested? Please leave your story below!

 

Celiac and Fitness: Everything You Need to Know Podcast

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This week I address celiac disease and fitness with my podcast – On The Air with Pretty Little Celiac.

I talk about motivation tips, how to get started and discuss the importance of moving when suffering from a chronic auto-immune disease!

Don’t forget you can subscribe on iTunes so you never miss a podcast.

YOU are the only person in control of YOUR health!

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I recently heard a story about someone who felt she “owed” it to her family to eat normal for a meal during a celebration event and this made me incredibly sad.

Is it because our medicine is food that makes it so hard for people to follow a strict gluten-free diet? Is it because we associate food as something our bodies need and really can’t understand how consuming gluten with celiac disease impacts our health now and in the future? Is it because for some of us the negative effects aren’t immediate like anaphylaxis so we treat it with less seriousness?

If your family member had lung cancer, would you expect them to go to a cigar club with you for your birthday?

No?

Well, then why would we expect someone with celiac disease to indulge in a piece of cake for a birthday?

Our society and culture is so wrapped around food, making it difficult for us to eliminate gluten because we feel our social lives are taken from us or our ability to have fun with friends. The crazy thing about living gluten-free is that it only confines us if we give it permission to do so. Gluten-Free is challenging and so is staying safe, but I’ll preach it over and over and over that with careful planning, a successful gluten-free life can happen. I live a full, happy, busy gluten-free life because I spent the time learning where and what my body loves to eat. I know what to order at even the scariest restaurants but still keep my fingers crossed knowing I did the best I could with the situation at hand. And, very rarely have I had a problem. Usually it’s when I let my guard down that I get glutened.

It is entirely possible training for a fitness competition and dealing with the negative and rude comments from people about what I ate during those times prepped me for the ignorance of people I meet now while living gluten-free. But, in all honesty, I don’t really care what people say about my eating habits because I’ve NEVER. FELT. BETTER. That’s really all our friends and family should be concerned about when it comes to our health. The foods I consume are healthy and not slowly killing me so where’s the problem?

At some point, you need to accept that others opinions don’t really matter. As long as you are educated about your disease, following the guidelines and living a happy life – that’s what is important. For me, I’m not asking anyone else to live gluten-free. I don’t promote gluten-free for people who don’t need it and I don’t go on and on about my problems unless someone asks me. Don’t get me wrong, I love educating others about my disease and gluten-free living and I’m a huge big mouth advocate too! But I know what I can eat, where I can eat and how to order – which makes all the difference in the world when it comes to staying safe.

But I can tell you that I would never, ever risk my life to feel normal. And you shouldn’t either! I’m the only one that will suffer the consequences and frankly there aren’t any gluten filled foods worth being sick again. (A really hot soft pretzel is very tempting at times though, after all I am human!) Check out an older post of my about why cheating on celiac is a horrible idea.

Bottom line is this… You don’t OWE anyone, anything when it comes to YOUR health.

One of my favorite quotes is by Eleanor Roosevelt –

“No one can make you feel inferior without your consent.”

Celiac Awareness and The Buckeye Journal

The Buckeye Journal Cover
The Buckeye Journal Cover

I can honestly say this is the best week of my life.

I’ve dedicated the last 8 months to Pretty Little Celiac and Bexa Body Fitness and all of those accomplishments were showcased this week. First with the Columbus Business First Forty under 40 award and now with the COVER of The Buckeye Journal.

Is this real life?

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This magazine circulates to thousands of central Ohio residents who will read about celiac disease and hopefully this will bring awareness and education to all that take the time to read it! My vision for the article is that everyone who picks up a copy will understand the struggles we go through and maybe even could help someone get diagnosed. There are people I will reach and I won’t even know it but that’s okay because I know in my heart I helped. If you’ve been reading my blog for a while, or maybe you just stopped by today – you should know I’m a type-A, overachiever who loves helping other people. It makes my day when I get emails, messages, comments and more letting me know how much our stories are alike or that I helped you through a difficult time. You have no idea how much it personally affects me!

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I have the most amazing things planned  for Pretty Little Celiac until the end of 2013. I know we are ending celiac awareness month but it’s my goal to make every month dedicated to celiac awareness. My projects are going to help so many people, that I just can’t wait to get them done and share them with the world. I hope you can sense my excitement for this blog because I think I might jump out of my chair.

Thanks for reading – Stay tuned for what’s to come!

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Are Gluten-Free Foods Making You Fat?

Are Gluten-Free Foods Making You Fat?
Are Gluten-Free Foods Making You Fat?

Are Gluten-Free Foods Making You Fat?

Yes. Yes, they are.

This weekend the Celiac Awareness Tour cancelled the day before the event, leaving me with a prepaid hotel room in Philly for the weekend.

Aaron and I decided to go to the city anyway and use it as a little getaway for us. Jennifer Fugo from Gluten Free School and I decided to meet up anyway since we weren’t speaking at the event anymore.

She told me about the cool things she does over at her website and all the research she’s done on sugar and gluten-free, which really got me thinking….

While it’s wonderful that companies are coming out with more gluten-free options and versions of foods we used to love, we still don’t need them. Gluten-free snack foods are usually higher in calories and fat along with lower in fiber. They are the ultimate empty calorie. Most of the products labeled  gluten-free are equally as bad for us as those products we loved filled with gluten.

As a fitness expert, I see this every day. Clients come to me wanting to know why they aren’t seeing results despite cutting calories and then go on to tell me they substitute regular junk food with low-calorie junk food. Snacks from Weight Watchers and Skinny Cow always seem to pop into the conversation. These products provide no nutritional value for your body. “Weight loss” snacks are FILLED with chemicals and processed junk which does nothing nutritionally for you, despite the marketing claims on their boxes.

Once you’re diagnosed with celiac disease, it is a tremendous life change. You struggle enough with just figuring it out along with all the emotional turmoil from the disease and health complications. You just want life to be easy. The problem is that easy in this area makes you gain weight. All those “easy” gluten-free foods are horrible for our waist line. Pancakes are bad for you filled with gluten and gluten-free. Just because it doesn’t make our auto-immune system go insane, it still isn’t the best option for us. Those products can be just as difficult to digest and cause other problems like inflammation aggravation.

Aren’t you sick of the high prices of this junk anyway? Don’t you want to eat for fuel and for happiness than instant gratification?

I’m getting ready to put together some awesome celiac fitness programming but please know we are going back to the basics on it!

Foods filled with nutrition should be priority for us, especially as we are trying to heal our bodies. Think about using the 80/20 rule for this. 80% of the time, eat foods that are nutritionally sound and make your body happy. Use the other 20% to indulge on something worth while like a great piece of gluten-free cake, a sundae, wine or whatever is your guilty pleasure. I recommend this to all my fitness clients at Bexa Body Fitness. That is how I lost my weight before and how I’ve started to do it again.

Twenty pounds later, I realized I consumed entirely too many snack foods throughout the week. I did a much better job tracking my food throughout the week and paying attention to when I had snack/junk foods. This helped me see eating patterns as well. One of my favorite tracking apps is My Net Diary. I use it on my iPhone to track my foods and fitness. There are a million apps out there, but I just found this one to work. I believe in moderation and enjoying your life. I’m don’t believe in fad diets or extreme weight loss programs. If you can’t have some things every once in a while, you are less likely to be successful.

If you try this and still aren’t losing weight – A few things could be happening –

1. Your hormones are off.
2. You’re not managing your vitamin deficiencies properly. (Supplements too expensive? Find an online vendor with bulk discount prices like Powdercity.com)
3. You aren’t writing down everything you eat and tracking it correctly.
4. You may have other health complications.

You are probably saying to yourself right now, so what the heck am I supposed to eat?

Well, instead of having lentil chips right now, I’m munching on some carrots. I hard boil eggs and consume them throughout the day. Nuts are a terrific snacking item. We try our best to stick with whole foods for dinner.

Here’s an example of what we eat for dinner throughout the week:

Monday: Salmon, green beans & red skin potatoes
Tuesday: Burrito bowls – rice, beans, ground beef, lettuce, avocado, peppers
Wednesday: Shrimp with rice – add veggies and use some gluten-free soy sauce in moderation
Thursday: Brisket with veggies from the slow cooker
Friday: Steak, spinach and sweet potato fries

Everything is very basic but tasty!

What’s your go to whole food meal?

 

Would you know if you had a vitamin deficiency?

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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

Getting Started with Celiac Disease: Podcast

started-with-Celiac

On The Air with Pretty Little Celiac Getting Started with Celiac Disease

My newest podcast from this week is up and ready to go! I cover the basics of getting started with celiac disease. Basically all the things you need to know after you leave the doctor’s office.

Were you recently diagnosed with celiac disease? Are you struggling with what to do after you left the doctor’s office?

This podcast is for you.

I cover what to expect after your diagnosis including:

1. Emotions you will feel

2. Tips to get through everything

3. A get started guide on living gluten-free

4. Major changes in your life that need to happen for you to be successful

Please leave feedback! I’d love to hear it. 

Gluten Free Hair Products Giveaway – ColorProof

ColorProof
ColorProof Giveaway

Gluten Free Haircare Giveaway – ColorProof

When my hairdresser said she started to carry gluten free products just for me, I was elated. She is amazing and I’ve been going to Teresa Carter for many years here in Columbus. I love all things beauty and my hair is just one more thing for me to obsess over. I’ll admit, my hair falling out was a huge sign for me that something was wrong with my body. It was very long but just not healthy.

I reached out to ColorProof to see if they would be interested in doing a giveaway for my readers because hair care is a question I am constantly asked about! And they were so wonderful to send me products to use and some for you to win! I’m giving away all 4 products in one swoop.

These products smell delicious – Is that even a thing? I just want to smell my hair all day. This might be the game changer from only washing my hair 2 times a week. I am extremely impressed with these products and they have a fan for life!

Straight from their website

All ColorProof products are formulated to deliver all of the good benefits, and none of the bad.

All Products are:

  • Sulfate-free | Salt-free
  • Gluten-free | Paraben-free
  • Phthalate-free | PABA-free
  • Carcinogen-free | MEA & DEA-free
  • Biodegradable formulas
  • Recyclable packaging wherever possible
  • 100% vegan
  • Never tested on animals
  • Keratin-free

So, where can you buy these fabulous products? They are salon quality so you will have to find a salon that carries them around your area. they have a finder on their website. What if there isn’t a salon near you selling them? ColorProof tells me, “Our products are only sold at salons and spas…. We are constantly updating our locator with new salons but if a reader still cannot find a salon in their area we would encourage them to ask their stylist about ordering ColorProof for them!”

Gluten Free at Aladdin’s Eatery: Review

Gluten Free at Aladdin’s Eatery

Aladdin’s Eatery
Aladdin’s Eatery

Wow. This place knocked my socks off when it came to gluten-free options! The first time I’ve eaten here and I will be a repeat customer for sure. As a matter of fact, I ended up at 2 different Aladdin’s Eatery‘s in one weekend because I was so impressed with their food.

Their entire menu is marked with gluten-free, vegetarian, vegan and nut coding so you can clearly identify which foods are safe. This worked great for my husband and I because he is allergic to nuts and I have celiac disease. We struggle with Mediterranean restaurants because they typically use lots of nuts and nut oil which causes him to go into anaphylactic shock. Check out their menu!

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Another reason to get excited is their juice options. I got the grape, carrot and cucumber juice for our brunch and it tasted great!

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We started with the falafel appetizer and tahini sauce. It was great. I even bought a gluten-free falafel mix at the grocery store to make them at our house. We will probably bake them instead of frying them. But I’m glad to have a new option instead of rice and quinoa.

My main dish was Jasmine’s Favorite with falafel. I had the lean beef the other night with this dish and I was very pleased. My mom had the same thing but got chicken as the meat option. She loved it.

My husband had a pita wrap both times and enjoyed them too! There are plenty of options for everyone there.

I highly recommend Aladdin’s Eatery for gluten-free dining! Find their locations online.

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