The Test Results are Here…

Well, after months of doctor’s appointments, blood draws, tests and procedures – I finally have some official answers. A couple of weeks ago, my gastrointestinal doctor called me with the results of my blood test and endoscopy after consuming gluten for weeks to prep for the tests. My last investigative tests were done in October 2013 and everything looked great. But, I had been strictly gluten-free for almost 2 years. The only way to get accurate results is to consume gluten again. Let this be a valuable lesson to you that BEFORE you get any testing done, you continue to consume gluten and your normal diet. I can’t emphasize this enough. I write about it a lot on my blog and in social media. To get accurate results, don’t change anything before seeking medical help.

So…

After years of thinking I have celiac disease, it turns out that I actually have non-celiac gluten sensitivity and Barrett’s Esophagus. There is a great article by Jane Anderson on about.com regarding this and it’s correlation to celiac disease and non celiac gluten sensitivity.   I mentioned in a previous post that I was on a mission for an accurate diagnosis because of education from the International Celiac Disease Symposium. I didn’t believe the tests I had done were accurate or enough to confirm a celiac diagnosis. Obviously, I am frustrated and disappointed that yet again I went years without an accurate diagnosis.

The symptoms of non-celiac gluten sensitivity can overlap with celiac disease, but they also have different ones as well. According to the National Foundation for Celiac Awareness, “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.”

I specifically struggle with the joint pain, inflammation, numbness and head aches, which looking back makes total sense. Even after consuming gluten again, I didn’t get the major stomach aches that I used to get before going gluten free. I was very bloated but I didn’t get sick to my stomach and that surprised me. It also reinforced my decision to go forward with the testing to get accurate answers.

So, what about the Pretty Little Celiac? Well, the reason I started this blog was to not only share my stories (the good and the ugly) but I wanted to advocate for this disease. This experience for me just reiterates how complicated getting a true diagnosis can be and the emotional and financial toll it takes on a person going through all of this. All of these experiences taught me so much about living gluten-free and celiac disease. Meeting all of you virtually through the internet and social media, along with all of the people I met at Expo’s taught me so much. Just because I don’t have celiac disease, doesn’t mean I will stop advocating for all of you and the gluten-free lifestyle. I am not going back to eating gluten because it really does make me sick and makes me feel terrible.

My experiences going forward will be more based on gluten-free living and the challenges and life lessons associate with that. I want to focus a lot on the challenges associated with gluten-free living but also the other auto-immune diseases that I struggle with such as Endometriosis and Hashimoto’s Hypothyroidism along with GERD/Barrett’s Esophagus. Obviously, with a name like Pretty Little Celiac, I would never want to deceive anyone to think that I have something when I don’t. I am going to spend the next few days or week brainstorming options, but if you have any ideas – let me know.

I’m sharing this information with you because I want to have full disclosure. I want you to know despite thinking I had all the answers 2.5 years ago, things change. New information is discovered and that’s okay. At first, I didn’t want to let all of you down but then I realized this is just part of the journey, part of the discovery and frustration that we all go through trying to find answers.

Have you had a similar story? I would love to hear about it. Email me or post it in the comments below for others to see we aren’t alone.

Thanks for being so loyal and such awesome followers.

Comments

  1.  Sue Rice says:

    Thank you for sharing your journey and this next chapter you are about to begin. You continue to inspire to a life of wellness, no matter what your health challenges are labeled.
    I really appreciate, as do many others I would think, how much information you have made accessible and how many people you touched along the way.
    I hope you will keep us informed of your new endeavours. I too suffered from Endo for many, many years until surgery. Best wishes and I look forward to cheering you onward on your new path.
    Sue

     

    •  Rebecca Black says:

      Sue, Thank you so much for this heartfelt comment. I appreciate it more than you can imagine! I’m going to keep almost all of the content on this site and probably transfer it over to my new blog http://www.RebeccaRefined.com – that way people can still find a lot of the information that is still relevant! I think the comments from thousands of people are just as important as my blog posts for people to be able to see they aren’t alone. That was the whole point of this blog was to let people know they aren’t alone in this journey!
      Glad to know you will stick around
      Rebecca

       

  2.  Erica Markee says:

    Hi! Thank you for sharing this story. Im in the process of finding a diagnosis for myself. This is all new to me and over the last 2 months what I’ve always thought of as just “a fast metabolism/digestive system” come to find out I have osteopenia and all my celic panel blood tests came back as strong positives.. I’m waiting for my biopsy, my youngest son is going through all of this as well.. Can you let me know what your blood tests were like? Did you have the antibodies on the TtG tests as well as positive gluten allergy tests? Thanks for any help

     

  3.  Chatmal says:

    I’ve been following you for a while (about 2 years now) and am part of the support group. I too am non-celiac, so they tell me. I get much of what you described: immediate runs followed by brain fog, possible migraine, fatigue. I’m not even sure what else anymore! I’m not willing to eat gluten because of how terrible I feel when I get glutened, but I may still do the gene test to be sure. Auto-immune diseases seem to run in the family so it’s hard to tell if there’s something else wrong with me or if that’s it. Clearly there’s more work to be done! I’m just grateful to have insurance again so I can continue the quest for answers.
    In my own trials, I think I may also be Corn Sensitive. I’m testing it now. I instinctively was avoiding most bread, pasta, oats and processed foods. So far, I think Corn gives me brain fog, fatigue even with 12-hours sleep, bloating, inflammation, joint swelling / achiness and weird skin breakouts that are not like normal pimples (for someone over 40?). Blemishes appear about 2-4 days afterward and have been on my neck, cheeks and earlobes (??). Most of these symptoms actually seem to have a 24-36 hour delay which is why it’s been so hard to notice and associate with corn. Perhaps it’s why 2 days after a party with tortilla chips and salsa or guacamole, I’m zonked and can barely get out of bed!
    Corn is such a special ingredient! It’s in everything — candy, soda, GF chips, GF breads & baked goods, and practically every medication has corn starch! It explains why I was fine with my homemade brownies with corn-free flour, but not after a store-bought cupcake. I’ll have to find my threshold since I need my daily meds!
    So, Rebecca, just know you’re not the only one on a health quest! And part of the quest is hoping the doctor, PA or NP will listen to us and our crazy-sounding theories!

     

  4.  Nancy says:

    It must be a bit of a relief to know that you can move forward knowing that you do not have celiac disease. I started following your blog about a year ago when I suspected that gluten was the root of my issues: brain fog, lethargy, numbness in my arms and feet, headaches, and such. Ultimately, I was diagnosed with Hashimoto’s which shocked me. Since then, I try to eliminate as much gluten as I can from my diet, and it seems to be working. Stress is the biggest trigger for me now. I will continue to follow you, and I wish you the best of luck with whatever the future may bring.

     

  5.  Kaila says:

    Wow, what a touching story. I’m so glad that you were able to find some answers. My story is almost the opposite of yours. I presented as a celiac with atypical symptoms. Now, I had weight loss and stomach pains, but they were mild in comparison to my other problems. My GI looked for everything but celiac. (I claimed wheat bagels were the only food that made me feel better). During my diagnosis process, I gained such a deep respect for my GI because so many diseases/conditions have similar symptoms when you’re looking into the digestive tract (and even other immune problems/organ systems too!). Once I went gluten free (post Celiac diagnosis), my acid reflux magically disappeared within days. I hope that the Barrett’s Esophagus diagnosis helps solve/explain some of your other conditions, and I look forward to following your blog to learn more about your journey.

    After years of thinking I have celiac disease, it turns out that I actually have non-celiac gluten sensitivity and Barrett’s Esophagus.

     

  6.  Hayley Haynes says:

    How long did you eat gluten before getting the blood test panel done to test for celiac? I am working with my new thyroid dr taking Amour and my chiopractor (for fibromaylgia) to feel better but if things don’t improve want to test for food sensitivities. The test is expensive so I want to do it correctly but dread the side effects of adding gluten back into my diet.

     

  7.  Pats44 says:

    For me it makes little difference. Gluten is bad for you, so avoid it. I am either coeliac or have ncgs. I only found out by doing the Fodmap diet – had no idea what coeliac or gluten was before and despite many trips to the docs had never been tested. No ive been gf for almost 6 months and theres no way im glutening myself for weeks for a test, just no way. So I’ll continue to eat GF and take vitamins

     

  8.  Angela says:

    Virgin coconut oil is the best thing to take for GERD,, by the spoonful, up to 3 tablespoons per day.
    For inflammatory bowel conditions, eat two Mrs Crimbles coconut macaroons (gluten-free) per day.
    Very best wishes
    Angela

Scott’s Gro-ables – The easiest way to create a garden at home.

This is a Sponsored post written by me on behalf of Gro-ables. All opinions are 100% mine.

My husband and I have been trying to find new ways to save money and even found local farmer’s markets for the summer to check out. But, then I heard about Miracle-Gro’s new products and had to try them. The Gro-ables are the latest product from Miracle-Gro. They are so easy to use, all you need is some potting soil, a pot and a Gro-able and you can create your very own garden anywhere! They are especially great for me now that we live in an apartment.

Gro-ables are perfect for anyone who is looking to save money at the grocery store and try something new. Gardening can be difficult but Miracle-Gro makes it super easy with these products. For less than $1.50 a pod, you can try gardening and new produce you might not have tried before.

We decided to try the green peppers and cilantro, since we eat them frequently in our home. Here is a great green pepper recipe from my blog that is super easy, gluten free and can be made just in time for dinner. 

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Ingredients:

1lb of grass-fed ground beef

1 cup uncooked tricolor quinoa

3 oz Fontina cheese cubed

2 cups of fresh spinach

3 large peppers

1 oz Asiago and Fontina shredded cheese

1/4 cup of Parmesan cheese

2 tablespoons of coconut oil

How to make it:

  1. Preheat oven to 375 degrees
  2. Start the Quinoa – it should take about 15-20 minutes to cook depending on what brand you buy
  3. Wash and clean out the peppers to make a big empty pepper cup.
  4. Brown the beef with the coconut oil in a skillet. Once it’s almost done, add the spinach in and cover for about 3-4 minutes until the spinach has wilted into the meat. You might want to stir it in so it’s not just sitting on top.
  5. When the quinoa is done, add the Fontina cheese and the beef mix. Get everything melted and into a nice consistency.
  6. Use a casserole or meatloaf dish to put the peppers in. Fill them up with the mixture and put in the oven for about 17 minutes (we like our peppers a little crispy but if you want them soft, you should leave them in longer).
  7. Take them out at the timer and add the shredded cheese on the top of them along with the Parmesan cheese. We are a cheesy household so you can put as much or as little as you would like on the top.
  8. Bake for another 4-5 minutes so the cheese can melt. Take them out and let cool for about 10 minutes.
  9. Enjoy!

Do you grow your own vegetables? I’d love to hear about them and if you would use these new products!

Pretty Little Celiac’s Top 10 Gluten-Free Airplane Snacks

10 Simple Gluten-Free Airplane Snacks
10 Simple Gluten-Free Airplane Snacks

10 Gluten-Free Airplane Snacks

We love to travel and one of the biggest challenges is finding gluten-free options in airports and especially on planes. I learned so many things as a fitness competitor, especially traveling for shows with a restrictive diet but the biggest thing is the ability to take food through TSA security! Yes! You can bring your own food with you to the airport and on the plane. I used to bring a 6-pack bag cooler (it’s a brand competitors use frequently) filled with baked fish, chicken and steak along with meatballs, sweet potatoes and veggies to fill my belly. If you think people complain about you eating gluten-free, try cracking open some tuna on a plane without your neighbors giving you the stink eye!

I like to think I’ve mastered the ability to bring things with me but even now and again I forget so if you have gluten-free snack items you love to travel with please feel free to post them below! The more information we can share for each other, the better and as you know that’s why I started Pretty Little Celiac!

Here are my top 10 gluten-free airport and plan travel snacks!

  • Fruit and/or dried fruit
  • Nuts
  • Raisins
  • Gluten-Free bars like Vans, Lara bars, Kind bars etc.
  • Go Picnic kits
  • String Cheese or Baybel’s
  • Applesauce
  • Sample packets of protein powder – purchased or separated yourself – mix at the airport
  • Tuna packets, canned chicken, canned salmon
  • Roasted sunflower seeds, pumpkin seeds – any seed! Make your own trail mix!

What am I missing? Tell us what you take through security and on planes or trains when you travel!!

 

My Experience with the Gluten Challenge

When my  new GI doctor told me I needed to start consuming gluten again to get an accurate diagnosis, I was immediately confused and conflicted. For 2 years I’ve mastered the art of living gluten-free and wasn’t even sure I wanted to go this route but I wanted to get answers so I agreed. That was in October right before we moved to Virginia.

I finally got into a GI doctor here, Dr. Solomon Shah in Fairfax, VA and was very impressed by his knowledge of both celiac disease and food sensitivities. I was instructed to consume way more gluten each day for 2 weeks up until my upper endoscopy appointment. If you follow me, you know I love soft pretzels. That’s basically what I’ve been eating several times a day, along with my regular gluten-free meals.

He also instructed me to eliminate all dairy products due to the slight possibility that it may be dairy and not gluten as the culprit for my body. Since I eliminated lactose a while back, it wasn’t that difficult for me to cut the rest out. Trying to read labels for dairy seems much easier.

For the past 14 days, my body feels like it’s in a sausage casing and any push on my skin is bloated and puffy. I can’t wear my wedding rings. My ankles have some mild edema going on and my face is abnormally bloated. My stomach just hurts and I’m not sleeping well. There is this overall sense of brain fog that I can’t seem to shake and I’m literally exhausted. Although part of the exhaustion is from my increase in workouts, but we can talk about that on a different post.

My arm has had a lovely rash on the inside of my right elbow and I’ve been experiencing an abnormal amount of heartburn. My joints feel extra achy and I’m getting really sore after my workouts.

Could this rash be from the gluten challenge?
Could this rash be from the gluten challenge?

Yesterday I had my endoscopy. It doesn’t really matter how many times I go for these procedures, I still get nervous about the anesthesia. My right arm has the perfect vein for IV’s and blood draws but the nurse insisted on using the top of my right hand. I know from experience that this is a bad spot for me. My tiny little veins are a challenge and I’ve struggled with that spot in times past. The nurses insisted and I let her try my hand. Well, I never had that much pain from an IV start in my life. Even my husband said my hand squeeze hurt him and he knew by the way my body was writhing around in the bed that it had to be painful. I know the nurse felt so bad but I warned her! The next stop was the spot I asked her to use in the beginning and it went in without a hitch. Moral of the story? Patients know what they are talking about!

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Bracelets for my Upper Endoscopy

After the procedure I don’t remember much but I do know I was tested for something called h. pylori due to some gastritis and Barrett’s esophagus along with the celiac biopsies. Call me weird but I’m fascinated by the pictures of my innards! The results will come in 3-4 weeks and I should finally have some confirmation one way or another.

So, what’s the point of me going through all of this? Why did I do the gluten challenge? Why didn’t I just accept the celiac diagnosis? These are all great questions.

I guess for me I feel like I’ve come this far to not have a conclusive answer. I share my experiences on here and believe I owe it to all my readers to know that even I continue to struggle years after my diagnosis. I run into challenges associated with diagnosis and am looking for answers to more questions about not feeling 100%.

Don’t be discouraged into thinking you are the only one fighting this battle or having difficulties finding answers… because you aren’t! We are all in the same boat and the only way to get through the rapids is to row together.

Effective today, I am 100% gluten-free and lactose free. I will be for the rest of my life. I did the gluten challenge so I could confidently say I tried everything in my power to get the correct results. The results may be inconclusive but I know for a fact that gluten makes me sick, especially after my gluten challenge. And to me… that’s all that matters.

Should you do a gluten challenge? This is a tough question and a decision you will need to make with your medical provider. I can’t make that decision for you, I can only share my story and let you know my experience with the challenge. I will take this time though to re-emphasize the importance of waiting to eliminate gluten from you diet until all of your testing is complete!

If you’ve done the challenge and are willing to share your story, please feel free to post it in the comments section. That’s what makes this community so great is the ability to share our individual stories and let others see they aren’t alone.

Until next time.

Comments

  1.  Sue Rice says:

    After 5 months of becoming more and more ill, weight loss of 30 pounds (1/5 of my body weight at the time) in 3 months, liver complications, gastritis, non-specific colitis, rectal ulcers (diagnosed via endoscopy and colonoscopy – but no test for celiac was done) and my family doctor closing practice, I was left alone and on the verge of being hospitalized. I went on a waiting list for a new family MD and took matters into my own hands using natural herbs and totally clearing everything out of my diet.
    Long story short, a year and a half later, I am back up 20 pounds, survived multiple “be prepared for cancer diagnosis”, multiple specialist (gastro last with the longest wait time) It’s gluten, I’ve tried reintroducing it and I get the week or so of symptoms. Intense gastro pain, system back up, tremors, migraines – you name it.
    My gastro was angry that no one sent me to him first (the small local hospital I was referred to was sure I had cancer as I lost so much weight so fast) as I now have been gluten free for a year and he can’t tell if I am 100% celiac unless I do the challenge.
    I work a job I love that requires my brain to be sharp, I like my weight where it is, even though in high school I wasn’t this tiny – it’s much better than before) If I did the two week challenge by gastro feels it would be a HUGE setback for me. Even just a cross contamination now takes me totally out of commission.
    As I have been strict in my regime and I am textbook symptom wise, he is given me an out from the test as I have promised to never eat gluten. Should another test be developed, he’s going to call me.
    I applaud you for your undergoing of the challenge and very much like you stating it was your choice. My choice is to not put my body through it and continue gluten free as although a slow process, I am feeling better everyday. You are so right – don’t stop eating gluten until you’ve had the test is the best advice.
    Good luck with your results. Will be sending you positive vibes.

     

    •  Rebecca Black says:

      Sue, thank you so much for sharing your story! I think people being able to see that it is a personal choice to be made without judgement. These issues are so personal and I am grateful for your story. Hopefully, by just sharing our stories we can help people make their own decisions (with the help of their doctors of course!)

       

      •  Sue Rice says:

        No judgement is so important! We all know what it’s like to be “that customer” in a restaurant, “that guest” etc. So very much love what you are doing by providing a forum of support, empowerment to make your own best choices and a community in which to share.
        Hope you have a speedy recovery from the gluten-ing

         

  2.  R. Roth says:

    apart from the 3 to 6 months or more needed to remove inflammation caused by your gluten challenge from all your body tissue and rebalance hormones and electrolyte ratios, sadly duodenal spot biopsies may still miss villi changes and therefore provide an inconclusive diagnosis. More importantly, any results so obtained will not be able to discern if you are non-celiac gluten sensitive or eliac nor show any concurrent issues to celiac disease (associated casein, legume, ovalbumin, salicylic acid intolerances, beta carotene/interleukin-15 switch, etc.).
    Our patients have had the most beneficial answers/results (and newest research recommends this route over previous gold-standard of biopsy) by getting genetic B1 subgenes of HLA-DQ2 and DQ8 tested (e.g. Enterolab.com “Panel B”). Latter also provides answers as to “what else” to avoid.

     

    •  Rebecca Black says:

      Thank you for your comment. I’ve already had the DLA-DQ2 and DQ8 tests done. I based my decision on information I obtained while attending the International Celiac Disease Symposium along with collaboration with my doctor. Again, this is the choice I made for my body and am willing to work take the chance. I understand others are not. But, with so many people offering differing opinions on how to diagnose etc. I feel it’s important to share my story and my choice. I didn’t write this post to argue with people but rather to let them know this is a difficult journey regardless of the route they choose to find answers.

 

 

Taking Control of Negative Events in Our Life

I can’t even believe it has been a month since I last posted on this blog. I apologize greatly for being missing in action. When we moved to Virginia from Ohio, we thought we had everything taken care of with my business and our house and right before Christmas, all of our planning fell through leaving us with a  lot of unplanned work. I’ve been going back and forth to Ohio much more frequently than I anticipated and it’s sucking up much of my time. I promise I’m not neglecting you!

But, through all of the emotional turmoil and personal things I’ve been going through, it really made me want to do a post on processing difficult situations. It seems like the last 2 months have been filled with chaos from multiple areas of my life!  I’ve written before about the emotional struggles when going gluten-free or getting a celiac disease diagnosis but I think it’s important to emphasize these feelings happen much more in our lives than we anticipate.

With everything I’ve been through in my life, I believe I’m a pretty strong person. I try to live a happy life and take things with a grain of salt, but every now and then something happens to shake me to my core. After all these years, I can say I make a pretty mean lemonade. (from all the lemons thrown at me of course!)

I want to share with you how I handle these situations.

One of the biggest challenges I faced recently was feeling betrayed by someone I trusted completely. This shook me to my core and caused feelings I haven’t had in a long time. But, what it showed me is the feelings I’ve had for this event are the same for when I was diagnosed with celiac disease, my miscarriage, realized gluten-free is for life or any other health problems I’ve discovered in the last 2 years.

We all grieve differently. Grief isn’t just something happens when someone passes away or leaves our life forever, it happens when major life changes cause us to question everything. You start to think about what you could have done differently, what you should have done or how you could have prevented the situation. For me, anxiety takes over my body for a few days and so does a somber and angry person – who frankly, I forgot existed. When I process these events, I go through the same process every time. Maybe these sound familiar?

First, I cry. I actually remember telling my husband when we first met that I “never cried.” LOL Yeah, Right.

Second, I want to be left alone. While I love and appreciate the texts, emails and messages, I really just need time to process the situation and my feelings. I also use this coping method to protect those around me because I tend to become angry and snappy while projecting my hurt onto them. I realized over the years that I just need to be alone.

Third, I process the situation. I run through the scenarios. I need to go through steps 1 and 2 to be able to effectively complete this step or else I end up with lots of irrational thoughts!

Fourth, I start planning for what’s next. I realize what is done is done and now I need to take action and move on. I need to grab the reins and start steering the horse, taking control of the situation.

And, finally, I learn from the situation. Setbacks, adversity, negative events are all a part of life. It happens to all of us. I don’t typically take the “why does this always happen to me attitude” and if I do, it doesn’t last long. If we can’t learn from our mistakes, we can never get better, never move on and never find our happy place again. We live in a world of anger and resentment with that situation controlling our lives. I don’t know about you, but I would much rather have the happy Rebecca in charge of my life instead of the Debbie Downer Rebecca.

I am fortunate to have this blog and lots of readers to share my stories with! But, I’m just one person. There are thousands of you out there who have similar stories and I think there should be a place for all of us!

In case you didn’t know, Andrew Cordova and I have a GFMagazine podcast that you can find on iTunes. We have a  bunch of episodes on there about coping and I have them on my Pretty Little Celiac podcast as well. In the last 9 months, we realized through all of the feedback from our readers that there is a need for a community to safely talk about issues like this one. A place where we can process our feelings, without feeling defeated or bullied online.

That’s when we came up with the idea for the GFree Community. We are in the pre-launch stage, but we are trying to get people who might be interested in this to sign up for more information. So far, we are thrilled at the response we’ve received already since we first started promoting it last week. Just click here to find out more and to join us!

I’m ready to start blogging again so you will see much more from me in the near future.

Rebecca

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.

8 Gluten Free & Celiac Disease Myths Debunked

myths-debunked

Last month, I attended the International Celiac Disease Symposium and am just now getting around to blogging about my journey for the last few weeks. After leaving ICDS, I flew straight to Baltimore and attended Natural Products Expo East. As soon as I got home, I packed our entire house and prepared my staff and business for my relocation to Northern Virginia!

We moved into our new apartment this weekend, my husband started his new job yesterday and I finally feel like I’m getting settled. The home-sickness is wearing off and I’m exploring the area more and more each day. But, in the meantime I owe you all about 10 blog posts!

Let’s get cranking with debunking gluten myths!

The ICDS 2013 was filled with speakers from all over the world who are medical professionals and experts on celiac disease. They discussed the current research and gave us the down low on all things gluten-free and celiac disease. One of the most exciting segments of the conference was “debunking the myths.” Finally, some answers to age-old questions that I am asked frequently with answers straight from the doctor’s mouth!

  1. Can you drink coffee on a gluten-free diet? Is there a protein in coffee that can cross react with gluten?
    1. Answer: Yes! You can enjoy your coffee. In fact, the coffee flowed everywhere during this conference. Could you have another, separate problem with coffee or caffeine? Yes! But, it is not linked with gluten or celiac as a cross reactive food.
  1. Can you diagnose celiac disease with just a blood test?
    1. Answer: No. Absolutely Not. Diagnosis requires much more than a blood test. See my earlier blog post on the 4 of 5 tests needing completed to confirm a diagnosis. If someone diagnoses you based on a blood test, find a new doctor.
  1. Corn? Can you eat corn while living a gluten-free diet? Is corn protein harmful for individuals with celiac or non celiac gluten sensitivity?
    1. Answer: Enjoy your corn. Dr. Fasano said, “There is absolutely no proof, no evidence that corn is harmful.” Again, could you have separate issues with corn? Yes.
  1. How common is non celiac gluten sensitivity?
    1. Answer: The doctors have no clue. Very new diagnosis and still in the learning phase.
  1. Has there been a gene linked to non celiac gluten sensitivity?
    1. Answer: No. Only for celiac disease.
  1. Are pills like Gluten Ease or other gluten enzyme pills found at health stores and pharmacies okay to take?
    1. Answer: Absolutely not. Never. There is never ever ever a reason to take these enzymes. They are totally unjustified by the lack of evidence. Nothing on the market helps digest gluten. There are products in the works.
  1. Is gluten making you fat?
    1. Answer: No. As a matter of fact, people it’s been found that the more wheat you eat, the less fat you are. (for those of us living with the ability to digest gluten)
  1. Is a gluten-free diet making me fat?
    1. Answer: Depends on what you are eating and how much. 40% of people are overweight at the time of their celiac diagnosis. Patients tend to gain weight after celiac diagnosis based on better absorption of food. Essential to work with a healthcare team, which includes a dietician to create a health and wellness plan for after diagnosis. Stick with whole foods.

All of this information was presented by medical doctors. I am just passing along the information that was giving at the International Celiac Disease Symposium! I hope this is helpful to you and your journey with gluten-free living and celiac disease.

International Celiac Disease Symposium 2013: Recap Day 1

International Celiac Disease Symposium September 23-25, 2013
International Celiac Disease Symposium September 23-25, 2013

Wow. Just wow. That is all I can say right now after my first day at the ICDS 2013.

I am forever grateful and thrilled I was able to attend this monumental event in Chicago. The information I learned already is so incredibly valuable and helps wade through much of the misinformation you find on the internet or hear through the grapevine.

The biggest thing I’ve learned so far is not to trust information found on the internet, even studies! They are filled with inaccuracies, small sample sizes or inconclusive information that can spread like wildfire. There are world-renowned celiac experts at this conference, sharing their findings, beliefs and information about celiac disease.

If you aren’t sure what the heck I’m talking about yet, the International Celiac Disease Symposium is a 3 day event held every 2 years in cities all over the world. Here is what the conference is all about directly from the ICDS2013 website,

“While the 15th ICDS meeting will continue to build upon the successes of 40 years of past ICDS scientific programs, the Chicago meeting is designed to address the interests of all of those affected by celiac disease and gluten-related disorders – from physicians and researchers to patients and clinicians to family and friends. The ICDS Chicago will present two distinct interactive educational tracks. The meeting will bring together the world’s top scientists and physicians to discuss the most recent scientific advances in managing and treating celiac disease and gluten-related disorders while a separate clinical forum will be held to further educate dietitians, clinicians, and patients.“

It’s impossible for me to share all the information I learned today into one blog post so I am going provide some information based on the major points of the discussions. If you head over to Twitter and do a #ICDS2013 search, there are hundreds, if not thousands, of tweets from the event that will blow your mind!

Here are some great things I learned today:

  1. We are not born with celiac disease. Genes, yes but the actual disease can develop at any age or stage of life.
  2. Women are diagnosed 2-3 times more frequently than men.
  3. When a biopsy is done, advocate and ask for 4-6 biopsy samples to be taken during the procedure. 2 is simply not enough.
  4. There is a major lack of follow-up with doctors and celiac patients – patients must advocate for their health and not only see their doctor for follow-up appointments, but work with a registered dietitian to ensure proper nutrition is being received by the celiac patient. There are inadequate follow-up visits, no assessment of compliance with diet, no follow-up biopsies are being done and inadequate f/u serology testing.
  5. Gluten alters bowel function in patients with irritable bowel syndrome if they are positive for the HLA-DQ2 or HLA-DQ8 gene but do not have celiac disease.
  6. Just because you have the HLA-DQ2 or HLA-DQ8 genes, it does not mean you have celiac disease.
  7. Celiac disease is seriously under diagnosed in men.
  8. There is not enough information to diagnose non celiac gluten sensitivity and no reliable information is available to determine how many people may be affected by this because screening is unknown as well.
  9. Small Intestinal Bacterial Overgrowth may be a problem in people who have similar symptoms as IBS or Celiac but aren’t diagnosed. There isn’t a lot of research on this but a hydrogen test is available. (Actually, this test is something I have at my house to take next week when I get back from the conference)
  10. A gluten-free diet should never be started prior to ruling out or being diagnosed with celiac disease.
  11. Doctors are still recommending a gluten challenge for people who have been gluten-free on their own merit or for other reasons and then need to be tested for celiac disease.
  12. If you have a first degree relative diagnosed with celiac disease, you should be tested.
  13. Support groups for children and adolescents are the best way to help them cope with their diagnosis. If you can’t find one, create one yourself. Sometimes we need to take these matters into our own hands in order to help the kids.
  14. Osteoporosis normalizes within 3 years of following a gluten-free diet of people with celiac disease.
  15. Failure to adhere to a gluten-free diet will cause continued bone density loss and contribute to osteoporosis.

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

In total, my mind was filled with information and excitement to not only learn about celiac disease, but also to have safe foods to snack on and enjoy for 3 full days. Stay tuned for more information from tomorrow and Wednesday!

 

Gluten-Free Sweet Potato Fries Recipe by Jennifer Fugo

Gluten Free Sweet Potato Fries
Gluten Free Sweet Potato Fries

Gluten-Free Sweet Potato Fries

Jennifer Fugo, CHC
Enjoying the roasted savory sweetness that makes up sweet potato fries isn’t a very difficult task to handle. I love them for any meal of the day and even the occasional snack!  Sweet potatoes are downright awesome for you and they can complement almost any meal perfectly.
Plus sweet potato fries are naturally gluten-free and better for you than traditional white potato fries.  As a result, they are perfect for a healthy, low-sugar, gluten-free and even paleo diet.  This recipe is one of many that’s approved for clients that do my Gluten-Free Sugar Cleanse.What makes my recipe different from others out there is that I use a variety of spicing combos.  I’ll share with you my five favorite options and each has no more  than 5 ingredients.  Make sure that the spices you choose are gluten-free (Frontier Natural Spices are always gluten-free) and have fun!
There are two tricks to cooking fries in your oven.  The first is to cut your ‘fries’ to about the same size.  Small fries will cook way too fast (and then burn) while the larger, beefy looking fries will stay soggy.  Do your best to keep them relatively the same.The second trick is to lay all the fries out in one layer.  Don’t pile them or they won’t cook correctly.Here’s the ‘thing’ with spicing… there’s no magic bullet for amounts of how much to use.  I like to make sure that everything is evenly coated with both oil and the spices.  I don’t worry so much about the salt because you can always add more salt to taste once they’re done baking.  Plus no sweet potato is ever the same size, so the amount of fries you’ll get will vary.  That’s why I’ll generally do about 1 tbsp of extra virgin olive oil (or coconut oil, if you can tolerate it) and then add a nice light coating of spice.  Combine them well.  If the fries aren’t evenly coated with oil, they’ll dry out and burn.  So add a bit more to the bowl and stir if needed.

Remember… you can always add more, but it’s difficult to take back too much spice.  I don’t say this to scare you off if you’re someone who needs an exact roadmap to follow for cooking, however even with an exact amount, you could still find the flavor overpowering.  That’s why I’ve taken photos (see above and click to enlarge the tray image) and you can get a sense from looking at them how yours should look!

Spicing Options

White Pepper & Sea Salt

Chili Powder & Sea Salt

Dried Rosemary & Sea Salt

Garlic powder, Black Pepper & Sea Salt

Smoked Paprika & Sea Salt

Gluten-Free Sweet Potato Fries

Sweet potato(s), peeled & cut into 3″ long sticks
Extra Virgin Olive Oil or Coconut Oil
Spices (pick from list above)

Pre-heat oven to 375 F.  Cover at least 1 baking sheet with foil (if you need more, then cover them as well since piling fries will not get you the results you’re hoping for).

Add your cut sweet potato fries into a mixing bowl.  Start by adding about 1 tbsp of oil.  Sprinkle a few pinches of salt and add a light, but even sprinkle of your spices of choice.  Combine well making sure that the sweet potatoes are coated (they will dry out if you don’t). If you feel that you want more spice, add a bit more and mix again.  Repeat this until everything is lightly coated to your desire.  (See my photo above for how much my fries were spiced before going in the oven)

Bake for 20 to 25 minutes and then flip fries over.  Bake for another 10 to 15 minutes until fries are nicely browned or are the consistency you like.  Keep in mind that you won’t get that crisp “out of the fryer” feel that regular processed white potato fries get.

Enjoy immediately!

Also, you can save them in the fridge, but they will be more soggy at that point if you don’t mind.

About Jennifer:

Jennifer Fugo is the founder of Gluten Free School, a website dedicated to teaching gluten-sensitive individuals commonsense, simple and powerful steps to get healthy.  She’s a certified Health Coach named a “Gluten Free Guru” by Philadelphia Magazine who co-hosts the popular “Gluten-Free Sugar Cleanse” that teaches gluten-free folks how to kick their sugar addiction, regain control of their diet and feel awesome again.

Jennifer is sought after speaker and expert for news contributions who has been featured on Yahoo! News, eHow, CNN, and Philadelphia Magazine.