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!

IMG_1440-1024x1024
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.

 

 

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.

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

askrebecca

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!

 

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

Coping with Celiac Disease: A Therapist’s Perspective

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

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

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

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

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

Want to know more about Jummy Olawale?

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

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

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

 

May is Celiac Awareness Month! Get your Gear Here!

Celiac Awareness Shop
Celiac Awareness Shop

May is Celiac Awareness Month!!

This is my first celiac awareness month as a blogger and I’ve got to say this is an exciting month for me. I’m extremely busy, have a ton of projects going and am just loving being part of the gluten-free and celiac community.

I am thrilled to have some amazing products in my shop for you to show your #PLCpride! Did you already order something and love it? Make sure you post it on Facebook and Twitter to show your celiac pride.

I like to think of awareness merchandise as conversation starters! This is the perfect opportunity to educate and spread awareness when you wear the green.

So, what do I have my store? Limited quantities of headbands and lots of bracelets.

Shipping is FREE over $15 and there is a flat rate to Canada.

I’m randomly selecting people who purchase things this month to get a bonus gift with their package – will it be you?

 

18 Things to Replace when Going Gluten-Free

18thingstoreplace

I’m constantly learning about new things I need to replace since going gluten-free after my celiac disease diagnosis. Just last week while gardening, I realized we probably should replace our grill since we spent many of summers putting meats covered in gluten filled marinades and sauces all over it! There probably isn’t enough cleaning I could do to risk cross contamination. So, for now I’ll stick with my George Foreman Grill and Oven!

Which led me to an ever bigger thought of what else did I replace after going gluten-free and how could I help all of you think of things to consider. Many of us don’t realize until we continue getting sick that this or that might be causing us problems!

I took a poll on my Facebook page and about 50 people responded to the question “what were you surprised you had to replace?”

Here are the answers!

  1. Toaster
  2. Plastic Tupperware
  3. Beauty products
  4. Bath products
  5. Hair color and products
  6. Waffle Maker
  7. Anything Wooden or Plastic in the kitchen
  8. Colander
  9. Bread Machine
  10. One person replaced their kitchen counters
  11. Play Dough
  12. Tea
  13. Protein Powders
  14. Nail Polish (if you bite your nails or have kids that are GF this is a good idea)
  15. Adult Toys and intimate Products – I just had a company ask me to do a giveaway on my site for some bedroom products and when I asked if they were gluten-free, she said no. Be careful with these items.
  16. Medications and Supplements
  17. Grill and other cook top items
  18. Food – Obvious!

Now I’m not suggesting you run out and replace all of these things immediately or if you are just living gluten-free for health reasons and not because of a sensitivity or celiac disease.

I’m surprised no one put “friends” or “family” down lol. That seems to be what many people struggle with the most when going through the lifestyle transition.

 

***Totally forgot about kids stuff like glue and play-doh!****

Do you have one that we missed? Please leave it in the comments below!

47 Gluten Poisoning Symptoms

47 Symptoms of Gluten Poisoning
47 Symptoms of Gluten Poisoning

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

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

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

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

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

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

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

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

Go Lo Foods Product Review

Go Lo Flatbread Recipe
Go Lo Flatbread Recipe

Go Lo Foods Product Review

Last week I posted this picture on Facebook and said if we got 100 likes, I would post the recipe on the blog. Well, we got over 100 likes which tells me you really want to know what all those delicious ingredients are on the cheeseburger veggie pizza I made last week.

Well, Go Lo Foods sent me a few products to try to review so this recipe is one that came from a product they sent me. I’ll post the recipe at the end of this post.

Go Lo Foods sent me their gluten-free flat bread, gluten-free pita and dark chocolate hazelnut spread to try out.

Go Lo Hazelnut Spread
Go Lo Hazelnut Spread

The Go Lo Dark Hazelnut Spread was great. Sugar Free, Gluten Free, Kosher are some of the great qualities about the product. It’s loaded with fiber in this 11oz jar and only 1.3 net carbs per 1.2 oz serving. No maltitol or sorbitol and no stomach ache after I tried it. I will say I’m always hesitant to do the sugar-free products because I think they taste weird but this did not! I melted about a tablespoon of it and dipped raspberries in it for an after dinner treat. It also was a nice change of pace from my usual almond butter on my rice cakes. You can find it online for $7.99-$9.99/jar depending on what website you find it on. HealthyLifeSeasons.com has it for $8.99.

Go Lo Gluten Free Pita Bread
Go Lo Gluten Free Pita Bread

The Go Lo Pita Bread is gluten-free, low-carb and low-sugar. Right off the bat I didn’t like the way the product cut open. The top part was very flimsy and it make it difficult to stuff or eat like a pita. I did eventually and slowly peel off the top part and put my fillings in it to throw in the George Foreman Grill. It cooked just fine and the most important part is that it tasted great. It is soft and was a delicious lunch addition for me. I will be buying this product again. It retails for $5.99 online.

My next project with them is pita chips!

Go Lo Flat bread is the biggest winner of all 3 of these products. I was amazed when I opened the container to find them flexible, not cracking and smooth. Just like a normal, gluten-filled flat bread would be. They are also low-carb and low-sugar along with gluten-free. We baked them for about 5 minutes first and then put the toppings on them.

My recipe for the cheeseburger pizza

1/2 cup grass-fed ground beef 1/4 cup low sugar and gluten-free marinara sauce
1/4 cup shredded mozzarella cheese – hormone free
Spinach
Mushrooms
Sweet Peppers

Layer accordingly on the flat bread after baking for about 5 minutes. Put back into the oven for 5-10 minutes or until the cheese is melted. The meat should be cooked prior to going on the pizza.

 

 

 

Gluten Poisoning at the Ballpark – Redd’s Cider

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

Gluten poisoning. I did not miss you.

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

Bam.

That’s when it happens.

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

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

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

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

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

HOWEVER…..

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

But I’m poisoned. So, now what?

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

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

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

My celiac gluten patch
My celiac gluten patch

 

The Ignorance about Gluten Free Living.

glutenfreeignorance-248x300

Since I started Pretty Little Celiac, I use a RSS feeder to send me articles relating to gluten-free and celiac disease to make sure I stay up to date on current trends and studies, but also to just see what the buzz is in the media. Today I woke up to the usual set of articles about gluten-free living and how the gluten-free “diet” isn’t necessary for most people and others that make it challenging for us to fight the gluten-free battle.

But, one article in particular caught my eye. Titled “Why the Billion-Dollar Gluten-free Industry is Secretly Laughing at All of Us.” I was intrigued. Were these new marketing techniques being used? Are there concerns with labeling I need to know about? Nope. None of these things were even addressed in the article by Dana Baaardsen from iVillage.com

The article started out fine at first talking about celiac and gluten-free popularity and then mentioned a blogger with celiac disease who came out against people eating gluten-free when they don’t have to. But then she went into a few sentences about gluten-free that really upset me. For instance, here is how she ended the article:

Here are some of the more ridiculous gluten-free products we found — mainly because most of them barely had detectable traces of gluten in them to begin with — if at all. Seriously, just eat more veggies:

Ridiculous? Really?

She goes on to identify a few products like sausages, potato chips, fruit snacks, make-up and juice while making outrageous comments like, “you shouldn’t be eating your make up anyway” and “This gluten-free stuff isn’t so hard after all.”

Wait… What? You wrote a 500 word article about gluten-free living, found a few products online that had a “gluten-free” label on them and decided to not only make a mockery about how I (and thousands of others) have to live but that it’s “easy” because you found a few junk food items that had the words “gluten-free” on them?

I am sick and tired of reading articles like this. I am tired of ignorant people writing and saying things when they have no idea what they are talking about.

Gluten-free living is easy? Well guess what Dana, I challenge you to eat gluten-free for 30 consecutive days and see how “easy” it is. Go to parties with your friends and watch them eat and drink while you sit there starving because you can’t have beer or party foods. Go to weddings with your family and eat a Lara bar out of your purse because the only thing to eat at the wedding is filled with breadcrumbs and sauces with gluten. Go to eat where you get poisoned by something that makes you sick for a whole week and disrupts your entire life.

THEN you can write a truthful article about living gluten-free. THEN you might recognize why it’s important to have “gluten-free” labeling on foods so you can easily navigate the grocery store and find things safe for you to eat.

But I guess until then, you CAN have your cake and eat it too.

Rebecca

Comments

  1.  Amy Cox says:

    Are you kidding me? Easy???? Any traces of gluten in ANYTHING makes me sick for weeks! When I found out I had Celiac Disease I was 31 years old. I was mysteriously ill for my entire life before. Hospitalizations, tests, broken bones, organ damage, and even Psych treatment when people could not find what was wrong. I had Osteoporosis from not absorbing Calcium properly in my bones, also all of my teeth are damaged. The Calcium that did not make it to my bones and teeth had collected in the arteries of my kidneys and caused them to almost fail. I have been in terribly painful treatment for the calcification of my kidneys FOR YEARS since. I also had high risk pregnancies and two of the three of my kids have food allergies (no coincidence that kid number three, the one I was gluten free during the pregnancy, is my healthiest with no allergies). This is of course only secondary to the horrid damage to my intestines. I have to work very hard to make sure I absorb vitamins. Eat more veggies? I would LOVE to! I love veggies. Unfortunately when your Gastrointestinal Tract is damaged, raw veggies are not easy to eat. And when you cook them the vitamin content is lowered so you have to eat more. Also, “you shouldn’t be eating your makeup”. Did you pay attention to your Science classes in school??? Read about the skin and how we absorb what we put on it. That sentence alone just shows your unbelievable ignorance. Seriously, basic human anatomy. Pick up a book in the children’s section if the big words confuse you. Read about the intestines and the skin and how we absorb vitamins. Pay special attention to how the intestines are like layers of screens with small holes for vitamins to go into our bodies AND IF INFLAMED…….they don’t. They go to waste and if your kidneys don’t work well…..they stick inside of them. I could go on and on. But the last thing I want to say is, writing an article in an attempt to put down people with a medical condition that you CLEARLY have not even researched is a despicable way to live. And it is one of the biggest problems with this country. Good luck with life! You will attract great people with that kind of attitude! I prefer positive people who offer help and ones who, when they don’t understand something, they don’t assume they do and judge.

     

  2.  Lisa says:

    This makes me insanely mad! She has not a clue what it’s like and people who just eat gf for the fad don’t either! Unless you are one of the people who gets ridiculously sick for a week and have to miss work, school etc you have no idea. When a cute guy buys you a drink at the bar and you have to ask what’s in it because you don’t want to be sick all night and they look at you like a freak. Or when you go to a restaurant and the waitress asks you “gluten what?” Until you have lived the life of a true celiac then you have NO idea how hard it is. And you go ahead and eat vegetables from the time your 15 until you die, then we’ll talk.

     

  3.  McKenna says:

    Thank you for this. I have been recently diagonosed with Celiac. While some of my family has been supportive and understanding, not all have. I am constantly being told that a little won’t hurt me… Although I am new, I am doing fairly well and don’t really want to take chances, I know a slip up will happen from time to time, but I don’t need my family, friends and co-workers thinking a little won’t hurt or that this isn’t really a problem.

     

  4.  Alexandra Berger says:

    Thank you, Rebecca.
    I’ve had celiacs since i was 3, but didn’t really know about it until i was 26, about 4 years ago. fortunately, most people in my life are very supportive of my “diet” and try to accommodate me as best they can. It is so important to have people talking about our side of the story and the struggles we face everyday. Thank you for your work to broaden people’s understanding of eating gluten-free.
    Alex

     

  5.  Suzanne says:

    This is your very best post. Ever. Thank you

     

  6.  jeanne says:

    How is it that a writer who is clearly clueless can get published. Her arogance and lack of knowledge is pathetic. The funny thing is, it seems to me that she inadvertently made a point she didn’t realize she was making….why is it “special” that meat & potato chips & juice needed to be labeled gluten-free? Um, because too many of these products that should be – often aren’t. It’s ridiculous how food manufacturers use wheat/gluten when its not necessary – its in everything (because of its addictive properties perhaps?). This is torture for those of us living with celiac! I don’t buy the gf fad-diet-thing, there is nothing cool about gf lifestyle. But I do believe the over-use of wheat/gluten is unnatural & causing a problem for countless others who are finding they can’t tolerate gluten – or others, like moms I know who are going gluten-free because their kids are suffering with unexplained health conditions that seem to respond to a gf diet (such as eczema, adhd, migraines, other autoimmune disorders, etc).

     

  7.  Dana Baardsen, Author says:

    Hi Rebecca, I’m including a response to your response! I’ve never done that before, but since you have used a corner of your website to address my article, I figured I would do the same to shed some light on these issues. I think it’s important. Thank you.

    http://danaelisebaardsen.com/5/post/2013/03/gluten-free-a-response.html

    Readers: This is a response to an upset blogger who read one of my fad-diet critiques on iVillage.com. She took the time to blog how she felt about my article on her website, so I am taking the time to kindly answer questions she raised and also provide some insight into who I am as a young journalist.

    Hi Rebecca from Pretty Little Celiac,

    Thank you for taking the time to read and respond to my article. I have taken the time to read and respond to yours. I hope you read my response with an open, grudge-free mind, as my writing has really been taken out of context. I know several other readers will take my article out of context as well, so thank you for giving me the opportunity to reply.

    My relationship with celiac disease:

    I do not live gluten-free, nor do I medically have to. I have studied Nutrition and Food Science for four years (this May I obtain my degree) and of course have studied the mechanisms of celiac disease. Not only is it a frustrating lifestyle to adhere to, but also a very serious medical condition. As stated in my article, “Gluten-intolerance (or celiac disease) is a legitimate medical condition and frustrating condition that irritates the small intestine and causes symptoms which range from diarrhea to nutrient malabsorption.” ßThough it is MUCH more than that.

    My response to my article and yours:

    This article posted on iVillage.com was to get people talking about certain studies recently conducted, which brought awareness to the fact that there is a much greater amount of people living gluten-free, compared to the amount of people who are medically diagnosed. In addition, companies may be taking advantage of the fact that there is a market for gluten-free foods.

    When large websites, like iVillage create content, the ideas are run through teams of editors and then assigned to writers, like myself. My content is then filtered through my top editors and then produced onto the website.

    This topic was assigned to me, as was the layout of addressing certain “gluten-free” products, which wouldn’t make sense for a NON-CELIAC to invest in. So of course, for someone who has celiac disease these products are great…but in the context that there are several individuals investing in gluten-free when they don’t necessarily have to, they may need to just make better food choices in general.

    Let me just give you an example of how these things work. I had inserted a line, which read, “So before letting the green flow out of your pocket, let it flow onto your plate (in the form of fresh veggies) and see how your body responds, before investing in a full-fledged gluten-free diet plan.”

    ^This line appeared right before the listing of gluten-free products, which a non-celiac may not benefit from investing in if it’s just processed foods in general which are making them feel down.

    However, one of my top-editors removed that line and inserted: “Here are some of the more ridiculous gluten-free products we found — mainly because most of them barely had detectable traces of gluten in them to begin with — if at all. Seriously, just eat more veggies:”

    I am responsible for this line, as it is under my name and so I am apologizing for the part of your response where you reference this line and include, “But then she went into a few sentences about gluten-free that really upset me.”

    I do not like upsetting anyone. EVER! If you read any blog post directly posted by me…it is always written with knowledge, love, and health in mind. I work with editors who edit like this too! However, especially for media-driven websites, my posts are given a certain personality. My diet-critic posts on iVillage tend to be written with research, but also with opinion, and sarcasm…which is normally turned up a notch (or few) by top-editors. I know it is bound to make people ANGRY.

    For example, I wrote an article regarding a diet, which originated in Britain. While I was brainstorming different words to describe a British individual, the term “Brits” popped into my head. Before I used it, I researched it and found that it can actually be considered racist, so I purposely didn’t include it. However, after the article was filtered through my editors, the term was inserted and there were people commenting how I’m borderline racist. The worst feeling ever!

    I work for iVillage though. If I said writing diet-critiques was my favorite thing to do, I’d be lying! I don’t like to criticize anyone, but I handle the assignment to the best of my ability. For iVillage, I’ve written lovely beauty and health articles, which I treasure… and I also work for iVillage by producing other writer’s content onto the site. I never turn down an assignment they give me, because I value my position there. Overall, iVillage is an amazing resource for women.

    I am sorry you have struggled with celiac disease, and you feel there are OTHER writers out there who ignorantly bash the condition. That’s unfair. You are doing a great service with your website by spreading knowledge about celiac disease.

    As far as your challenge is concerned: I have challenged myself with restricted food-choices, like vegetarianism for one year after eating meat my whole life, but never would I subject myself to gluten-free living if I didn’t have to. I know it’s hard. But believe me, I am a journalist at heart, and if any editor ever asked me to live gluten-free for 30 days and document it, I would! I’ve pitched to do it with a juice-only diet for 30 days over a year ago, but the interest wasn’t high enough. That’s the type of reporting I would really love to do.

    I’ve heard of those with celiac disease who like that gluten-free is gaining awareness, because it offers more food choices for them. I’ve also heard others with celiac disease who can’t stand that the trend has gained popularity because it is making their products more expensive, and restaurants don’t take it as seriously because they just want to fit into the “trend”…so some people feel they are more likely to get sick eating out from contamination.

    One more note I’ve made for you: You addressed my article, “Why the Billion-Dollar Gluten-free Industry is Secretly Laughing at All of Us,” and you continue to share, “I was intrigued. Were these new marketing techniques being used? Are there concerns with labeling I need to know about? Nope. None of these things were even addressed in the article by Dana Baaardsen from iVillage.com”

    The FDA better not be mislabeling gluten-free! If it is labeled gluten-free, it SHOULD be. I have read about factories/companies producing foods with and without gluten within the same factory, but fears of cross-contamination shouldn’t rest within the realms of labeling. That fear, as you know, should stick to eating out at restaurants. (Right now, my labeling fears reside with GMO and the new politics regarding Monsanto…ugh!).

    But to follow up with you, (within the limited time) I was given to write the article, I interviewed a Food Scientist about the cost of gluten-free foods. (This was also cut by my top-editors)

    An excerpt from my first submission:

    Food Scientist, Dr. John Specchio adds, “Costs of gluten-free foods are higher than regular food products because there is a demand for it.” He continues, “If something is popular, there will be a market for it, which is why they can increase the costs on those products. In addition to that, the food product needs to be reformulated, since they are removing the Gluten. There is a lot of research that goes into creating a product which meets public demand… that costs money too.”

    Discussing Dr. Specchio’s insight on gluten-free food pricing, was to draw light to the fact that these foods tend to be pricier…so if you’re not medically diagnosed, why subject yourself to that?

    I can tell by your response, you had written and posted it with frustration and anger, and I never meant to stimulate that reaction within my readers. The least I could do was offer you (and others) a little insight into who I am, where I come from as a human being and freelancer, the possibility that a brain may be floating around somewhere in my skull, and to remind you why these articles are produced in such a way and that a lot of planning and editing actually goes into them.

    What have I done for the gluten-free community?

    Last year, I worked with a pizzeria in New Jersey to use and continue using gluten free pizza crust and offer gluten-free pasta (even though it’s more expensive and the chefs had a hard time because it takes longer to cook than regular pasta!)

    I also run a women’s health newsletter, and we are working on a gluten-free awareness newsletter right now, and I have run gluten-free awareness articles in the past under that newsletter, all authored by a gluten-free writer.

    If I ever do a gluten-free challenge, you will be the first to know.

    With love,

    Dana

     

  8.  Jess says:

    Here is my response to Dana which iVillage would not let me post:
    “You have done a huge disservice to the 6-8% of American with non celiac gluten sensitivity, in addition to the 1% of us who have Celiac Disease. Although you quote the Univ. of Chicago Center for Celiac Disease’s website, there have been several studies in the last 2 yrs showing that the incidence of non celiac gluten sensitivity is higher than 2-3% (check out Dr. Fasano on http://www.pubmed.gov). There are many with gluten sensitivity, who, due to activation of the innate immune system, have severe reactions to traces of gluten (including a few of my own family members). In addition, it was difficult not to take offense to your comment regarding gluten free cosmetics. Any mother of a child with Celiac Disease or gluten sensitivity needs to be extremely careful that her lipstick is gluten free.”
    Jess recently posted…Sun Dogs, Celiac, and GratitudeMy Profile

     

  9.  Becky says:

    The post in iVillage is certainly a Passive Aggressive buck shot to the Gluten-free community. The key identifies are as follows:
    1. Address the intended audience as if you have no clue who they might be
    Title suggests the food industry while the article addresses those with celiac’s disease/ gluten intolerant and those who choose to follow this diet without any medical indication of having this condition. The article’s lack of focus jumps from one view point to another leaving the reader with little information.
    2. Use of anthropomorphism
    “Gluten, the protein-complex mainly found in wheat products, has become a recent villain”
    “deflecting our ailments on to poor ol’ gluten”
    3. Stating the obvious
    “We are not discounting that.” This refers to the legitimate medical condition to which the article gives permission for those inflicted to pursue a gluten-free diet.
    4. Suggest highly improbable consequences
    “When someone cuts out “gluten-containing” foods, they experience feeling cleaner, more energized and healthier…but was it really the gluten that was getting them down?” Yes, it is.
    “You were not really eating sausages if your sausages had gluten in them” I suggest you read the labels of the foods you eat and research the different ways gluten is labeled.
    “You shouldn’t be eating your makeup, anyway.” Gluten in eye makeup causes immediate tears and welts after I’ve accidentally used the wrong brand.
    5. Suggests a solution to the problem that patronizes the reader
    “So why in the world would a non-celiac subject themselves to such torture?” Every medical test I’ve had for celiac’s disease has been negative. Yet, on a gluten-free diet I thrive.
    “people keep getting hoodwinked” You suggest consumers are subject to media hype and can not make decisions for food.
    “Seriously, just eat more veggies”

    If the iVillage editors deleted, substituted segments of your article, then may I suggest you post your original article on your website to clear up any misunderstandings towards you. As it stands, this article is inflammatory aimed to ‘anger’ the audience to which you have agreed to participate.

     

  10.  Becky says:

    The post in iVillage is certainly a Passive Aggressive buck shot to the Gluten-free community. The key identifies are as follows:
    1. Address the intended audience as if you have no clue who they might be
    Title suggests the food industry while the article addresses those with celiac’s disease/ gluten intolerant and those who choose to follow this diet without any medical indication of having this condition. The article’s lack of focus jumps from one view point to another leaving the reader with little information.
    2. Use of anthropomorphism
    “Gluten, the protein-complex mainly found in wheat products, has become a recent villain”
    “deflecting our ailments on to poor ol’ gluten”
    3. Stating the obvious
    “We are not discounting that.” This refers to the legitimate medical condition to which the article gives permission for those inflicted to pursue a gluten-free diet.
    4. Suggest highly improbable consequences
    “When someone cuts out “gluten-containing” foods, they experience feeling cleaner, more energized and healthier…but was it really the gluten that was getting them down?” Yes, it is.
    “You were not really eating sausages if your sausages had gluten in them” I suggest you read the labels of the foods you eat and research the different ways gluten is labeled.
    “You shouldn’t be eating your makeup, anyway.” Gluten in eye makeup causes immediate tears and welts after I’ve accidentally used the wrong brand.
    5. Suggests a solution to the problem that patronizes the reader
    “So why in the world would a non-celiac subject themselves to such torture?” Every medical test I’ve had for celiac’s disease has been negative. Yet, on a gluten-free diet I thrive.
    “people keep getting hoodwinked” You suggest consumers are subject to media hype and can not make decisions for food.
    “Seriously, just eat more veggies”

    If the iVillage editors deleted, substituted segments of your article, then may I suggest you post your original article on your website to clear up any misunderstandings towards you. As it stands, this article is inflammatory aimed to ‘anger’ the audience to which you have agreed to participate.

     

  11.  Dave says:

    Easy-yeah sure . when the family stops at krispy kreme for a few and you just watch or vistiing family in a small town usa. cant really eat out with others must prepare , bring or ???

     

  12.  Alex Kinsella says:

    I do a lot of event planning for my job. Since my diagnosis, I make sure to have the caterers include gluten free food and beverage options – not just for myself, but for other celiacs too. Makes a world of difference.