GIVE ME MY FOOD BACK! GIVE ME MY FREEDOM BACK… A Celiac’s Rant

giveme

 

Let me start by saying that this is probably the most embarrassing post I have written to date.  It exposes a side of me that most people never get to see, how eating gluten affects my body, immediately. I feel that if this gets the point across, then for the greater good it is. Oh and this is a rant, expressed from my own personal experience and need to get it off my chest.

On that note, I am tired of getting sick when I eat. I’m tired of being embarrassed for having Celiac Disease & having to explain in explicit detail EVERY SINGLE TIME how seriously ill I get from eating gluten, stressing that I am medical gluten free and not just a fadder.  Explaining cross contamination to a restaurant that has half their menu filled with little GF’s and their staff who are just above clueless on what gluten free or Celiac disease is.

It seems like no matter how much I stress the seriousness of this illness and the effects, some people just don’t get it. This past weekend I had a friend visiting from out-of-town and we decided to have lunch at a new place that recently opened in Sherman Oaks called, Blu Jam Cafe on Ventura Blvd.  My friend had found it online saying that it was ‘gluten free friendly’.

Screen Shot 2015-02-16 at 2.18.59 PM

I have become accustomed to warning bells go off in my head when there is mention of tons of gluten-free items on a menu, but decided to check it out and see what is was all about.  He was right, there were tons of gluten free items.  Yet, when I asked the waitress about safety, her eyes glazed over and I could tell that she was completely clueless about what GF was, even as she was shaking her head in understanding.  

The manager then stopped by the table and assured me that even though their kitchen was not completely gluten free, she would make sure that my food was made as safe as possible.  I still had my doubts. My question is, if you do not understand the concepts and dangers behind gluten ingestion to someone who gets sick or the ramifications of cross contamination, how can you ‘try’ to make sure my food comes out as safe as possible?

Finally the food arrived: eggs, potatoes and bacon, looking absolutely delicious.  I had an inkling that I was going to be glutened because of cross contamination, but I gave it a shot. Halfway through my breakfast I stopped eating and gave my body a few minutes to compute its contents and see if it would react.

My friend sitting across from me, sat there wide-eyed as he watched the small soccer ball started to form where my flat stomach had been moments before.  I looked 3 months pregnant in less than five minutes of eating half my food.  My friend, who’s in the health industry, finally started to understand the consequences gluten intake can cause someone in my situation.

As he felt my tummy, he couldn’t believe how hard it was, comparing it to a balloon that was on the brink of popping because it was too full of air.  All I wanted to do was get home, to my bathroom, to my bed, for at least the next 24 hours.  There goes my fun, frolicking weekend with my friend.

These are the before and after photos of what my stomach normally looks like and my stomach after.  Here goes:

Before

AFTER

Bloating is just the first symptom I get within the first few minutes of ingesting a small amount of gluten.  

Hopefully these photos help get the point across of how serious Celiac disease is, to me and so many others. I am NOT a flash in the pan and the many problems associated with gluten, aren’t going away.

There NEEDS TO BE regulations for restaurants providing gluten free options. If offering gluten free, the staff and kitchen needs to be educated on the dangers and the protocol.  Gluten free food was created so I could eat safely, not so people who want to go gluten-free could eat food without gluten.

GIVE ME MY FOOD BACK.  GIVE ME MY FREEDOM BACK.

 

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Comments

    • Jeff
    • June 24, 2015
    Reply

    hello, i too am celiac and often get severely bloated after eating even though I do not think I got glutened. I have read Dr Junger “clean gut” and he feels combining slow digesting foods (fats, meat) with carbohydrates can be one reason for bloating. I am often just never sure what the problem is unless I have diarrhea later.
    I would love to figure it out as I run, exercise and have a flat stomach some of the time but as the day progresses I get a paunch and it pisses me off. I also get fatigued and feel better if i just dont eat.

  1. Reply

    At least you still look good before the bloating (and after). 10 years of constant bloating when undiagnosed and 10 more years diagnosed but still bloating my before photos look like your after photos. I absolutely hate this part of celiac disease.

    thanks for the article, it was needed. going to share this article with others.

    • Alice Archer
    • June 23, 2015
    Reply

    Thank you for your honesty.

    • vince
    • June 23, 2015
    Reply

    I appreciate this revealing and courageous post. I have found that there is more freedom in going totally new into the gluten free route, instead of taking the advice of friends who don’t understand. I’ve found that the grocer’s freezer is better than restaurants. I’ve found that Udi’s pizza in a grocer’s freezer is more fun and way more delicious than Pizza Hut, for example. It takes some getting used to, to go in a different direction, than friends go, but I found it necessary, and more freeing and much more delicious, and, most of all, totally safe.

    1. Reply

      Thank you for that Vince 🙂 you know when you go out you are always rolling the dice. Have you tried canyon Bakehouse bread yet? It’s my favorite.

  2. Reply

    Thanks for the post. I feel your pain — literally. And it’s so good to hear someone else state it clearly and strongly. My gut is a bloody unhappy gut if it gets glutened — and no, most people simply don’t get it. I don’t eat out except in dedicated facilities. But I’ve visited my family, and friends, and used kitchens where I risked it; and ended up ballooning. Though I also end up in horrible aches and pains usually by the next day, and brainfogged.

    1. Thanks for posting CJ, I know about rolling the dice and it’s a price we have to pay sometimes no matter how much we try to educate.

  3. Reply

    Right on! I feel your pain. I feel like being social with food often puts my health in a compromising position. People don’t get it and you’re so right that there should be regulations governing gluten free labeling at restaurants. Somehow I end up leaving payment and a tip for a service that renders internal damage. This isn’t going away…we have to find a better way!

    1. I think the more we agree that change needs to happen, the less people are going to stand for the dangers eating out may bring.

    2. I need to ask if you are calling in advance and speaking to the manager/owner/chef about your meal and what you need to eat safely,.Call before lunch or after 3 and be polite and direct without being confrontational. When you arrive, head to the lavatory and on the way speak to your waiter about your order and make sure the manager follows your meal from beginning to end and serves it to you personally. This is the way it is supposed to be done. If they brush you aside or seem hesitant, go somewhere else– they don’t want your business. Many a time folks in our position have gotten up and politely left after realizing they were not going to be served properly. There is nothing wrong with doing this, either.

    • DEC
    • November 7, 2013
    Reply

    You worked in the restaurant industry, you could open your own restaurant. In a larger city, it would be very easy to gain a clientele by being a gluten free restaurant. Not a cafe that serves gluten free options, but by being truly and totally 100% gluten free. The best part is, you don;t have to be a celiac to enjoy the food.

    Please consider it! You know the need and the market.

    • DEC
    • November 7, 2013
    Reply

    You worked in the restaurant industry, you could open your own restaurant. In a larger city, it would be very easy to gain a clientele by being a gluten free restaurant. Not a cafe that serves gluten free options, but by being truly and totally 100% gluten free. The best part is, you don;t have to be a celiac to enjoy the food.

    Please consider it! You know the need and the market.

  4. Reply

    Greetings! This happens to me all the time, I don’t have insurance so I cannot get myself treated for my conditioned but have been severely sick for the past 12 months. I cut gluten out of my diet and have felt better – I am unsure what the swelling of the stomach means though. Is it our colon swelling up? Can you share any of your diagnosis and other conditions? Thanks for sharing this, I thought I was the only person who felt this and didn’t know others would have the same instant reaction from gluten – the doctors at the free clinic shared I would only get gassy from eating gluten and didn’t understand the pain and swelling I told them I experience after I had gluten. Any advice would be great 🙂

    1. That is one reason support groups work where the internet doesn’t always. Sorry you have suffered alone; odd how the story is so similar to others. I hear this all the time. The internet can be a great source of information.

  5. Reply

    Greetings! This happens to me all the time, I don’t have insurance so I cannot get myself treated for my conditioned but have been severely sick for the past 12 months. I cut gluten out of my diet and have felt better – I am unsure what the swelling of the stomach means though. Is it our colon swelling up? Can you share any of your diagnosis and other conditions? Thanks for sharing this, I thought I was the only person who felt this and didn’t know others would have the same instant reaction from gluten – the doctors at the free clinic shared I would only get gassy from eating gluten and didn’t understand the pain and swelling I told them I experience after I had gluten. Any advice would be great 🙂

    1. That is one reason support groups work where the internet doesn’t always. Sorry you have suffered alone; odd how the story is so similar to others. I hear this all the time. The internet can be a great source of information.

    • Leslie W
    • November 3, 2013
    Reply

    Great post. I have CD. Ironically, I say it was my best diagnosis. Since being GF , I feel so much better and so far lost over 50 lbs. It’s a major task at restaurants, and even in my own household or family gatherings. I educate as I can. I have a demyelination Syndrome similar to MS. Before the diagnosis, I was living w brain fog, other cognitive issues, muscle pain, severe fatigue, on and on. Food would just run through me with intense stomach pain. Not fun. I’m also glad there is such an awareness. It all helps getting the industry to understand. I particular appreciate it when restaurants truly understand the logistics to serve true gluten free meals. Take care, all!

    1. I say the same thing Leslie, being diagnosed was the best thing. Now I am healthier and on a new path in life.

    • Leslie W
    • November 3, 2013
    Reply

    Great post. I have CD. Ironically, I say it was my best diagnosis. Since being GF , I feel so much better and so far lost over 50 lbs. It’s a major task at restaurants, and even in my own household or family gatherings. I educate as I can. I have a demyelination Syndrome similar to MS. Before the diagnosis, I was living w brain fog, other cognitive issues, muscle pain, severe fatigue, on and on. Food would just run through me with intense stomach pain. Not fun. I’m also glad there is such an awareness. It all helps getting the industry to understand. I particular appreciate it when restaurants truly understand the logistics to serve true gluten free meals. Take care, all!

    1. I say the same thing Leslie, being diagnosed was the best thing. Now I am healthier and on a new path in life.

  6. Reply

    Like looking in a mirror .. the “after” picture that is! The bloat, etc. we must endure after eating at a restaurant where cross-contamination was not taken seriously enough. Certainly the “trend” of Gfree has made our lives a bit more convenient (more choices at the market), but at the same time put us at a higher risk because now GF at a restaurant doesn’t always mean GF for Celiacs/gluten-sensitive. If a Restaurant offering GF items, cannot provide a 100% gluten-free safe zone, staff training, then they should make it loud and clear (via verbal or notation on menu) that there is a risk of cross-contamination, and unfortunately this isn’t happening. Gluten-free pizza being made in the same area has wheat pizza, etc. happening all the time … hopefully more restaurants will seek training if they plan to offer GF items (which are safe for our community!). Hope you’re feeling better.

  7. Reply

    Like looking in a mirror .. the “after” picture that is! The bloat, etc. we must endure after eating at a restaurant where cross-contamination was not taken seriously enough. Certainly the “trend” of Gfree has made our lives a bit more convenient (more choices at the market), but at the same time put us at a higher risk because now GF at a restaurant doesn’t always mean GF for Celiacs/gluten-sensitive. If a Restaurant offering GF items, cannot provide a 100% gluten-free safe zone, staff training, then they should make it loud and clear (via verbal or notation on menu) that there is a risk of cross-contamination, and unfortunately this isn’t happening. Gluten-free pizza being made in the same area has wheat pizza, etc. happening all the time … hopefully more restaurants will seek training if they plan to offer GF items (which are safe for our community!). Hope you’re feeling better.

  8. Unfortunately, medical schools usually spend only 15 minutes on CD, and students are told “they will probably never see a case so don’t worry about it.” So, is there any wonder doctors are in the dark when it comes to the 300 symptoms related to this disease?

    1. Reply

      It’s more like 250+ (and growing) overt symptoms, and another 250+ latent symptoms which are hard to recognize until the patient is critically ill. The medical and scientific body of research is out there, and growing. However, even the GI doctors are not reading recent findings in their field, and many are still in the dark. It’s too bad sometimes know more about CD than the physicians, but we are fortunate to have the option to read their recent research papers and clinical studies.

      1. Sad and true; many GI docs are up on CD and many are not. We sent a mailing to over 100 docs in our community and only got one response. We have given out flyers, brochures, all kinds of materials to family practice, internal medicine and GI’s– very little response. It’s very disheartening.

      2. yes, when I heard Dr. Peter Green speak, he said, there was a short paragraph about Celiac and that was it. People cannot diagnose what they are not informed on. Not to mention, Celiac Disease wasn’t even recognized as a disease until 2003, there are still a lot of skeptics out there unfortunately.

  9. Unfortunately, medical schools usually spend only 15 minutes on CD, and students are told “they will probably never see a case so don’t worry about it.” So, is there any wonder doctors are in the dark when it comes to the 300 symptoms related to this disease?

    1. Reply

      It’s more like 250+ (and growing) overt symptoms, and another 250+ latent symptoms which are hard to recognize until the patient is critically ill. The medical and scientific body of research is out there, and growing. However, even the GI doctors are not reading recent findings in their field, and many are still in the dark. It’s too bad sometimes know more about CD than the physicians, but we are fortunate to have the option to read their recent research papers and clinical studies.

      1. yes, when I heard Dr. Peter Green speak, he said, there was a short paragraph about Celiac and that was it. People cannot diagnose what they are not informed on. Not to mention, Celiac Disease wasn’t even recognized as a disease until 2003, there are still a lot of skeptics out there unfortunately.

    • Sue Watson
    • November 2, 2013
    Reply

    I ate at a restaurant the other day and was fine. A few days later I ordered the same thing and was immediately sick. I also have soy issues so I don’t know if there was gluten or soy added the second time. I’m so glad someone said something about the brain tingles. I’ve had that for years and the doctor looked at me like I had lost my mind.

    • Sue Watson
    • November 2, 2013
    Reply

    I ate at a restaurant the other day and was fine. A few days later I ordered the same thing and was immediately sick. I also have soy issues so I don’t know if there was gluten or soy added the second time. I’m so glad someone said something about the brain tingles. I’ve had that for years and the doctor looked at me like I had lost my mind.

    1. What do you feel like when you get brain tingles?

      1. Reply

        I used to have brain tingles as well … I described them to my doctor as my “zoom, zooms” .. just this quick “zoom” (tingle), and then gone. Fortunately since being Gfree, no more zooms!

  10. Reply

    Great blog Kirsten, and for me it’s dairy and sugar as well, eating out is like walking through a mine field. Not only do I call the restaurant as suggested, in off hours, I remind the hostess when I arrive that I had made a request by phone regarding my diet, I arrive earlier than my friends or I let my waiter know as I head to ‘wash my hands’. I hate making it an issue in front of everyone.
    In addition, I keep high fiber protein snacks that I make myself with me, and I also eat 100-200 or 300 calories of the snacks before I leave for a party, I weigh them as I make them and freeze them. Survival of the Fittest!

    1. Great advice Elaine, thank you

    2. actually, you are doing everything we tell our members to do to dine out safely, including the nicest way to handle talking to a waiter. I do the same thing. And always eat before going to a party. It’s ok to talk to the hostess first and find out what is being served that way you have advance warning to get thru the line first before the utensils get mixed up, or make a dive for the shrimp and veggies and leave everything else alone. Nothing worse than going to a wedding or banquet and finding out there
      is nothing you can eat!

      1. That is great advice Sybil, thank you. People ask me so what do you eat when you go to a party? Well, I am usually the one in the corner hogging the veggie platter, lol. I look at this disease as a blessing because I am forced to be healthier and choose healthier options.

      • Leslie W
      • November 3, 2013
      Reply

      Great post, Sybil. I can’t do Gluten, sugar, lactose, and peanuts! Talk about a mine field. ;D

      1. Wow!

      2. Keep in mind you can eat Cabot hard cheese which does not contain lactose– the more fat in the dairy product the less lactose it has– so skim milk and non-fat products are loaded, but things like whipped cream are safe. Sugar? We can all do well do avoid sugar. Peanuts? is a bit more difficult especially with baked goods but it’s not impossible. A mine field, yes, but not impossible to manage. Try adding soy, eggs and corn to that list !

  11. Reply

    Great blog Kirsten, and for me it’s dairy and sugar as well, eating out is like walking through a mine field. Not only do I call the restaurant as suggested, in off hours, I remind the hostess when I arrive that I had made a request by phone regarding my diet, I arrive earlier than my friends or I let my waiter know as I head to ‘wash my hands’. I hate making it an issue in front of everyone.
    In addition, I keep high fiber protein snacks that I make myself with me, and I also eat 100-200 or 300 calories of the snacks before I leave for a party, I weigh them as I make them and freeze them. Survival of the Fittest!

    1. Great advice Elaine, thank you

    2. actually, you are doing everything we tell our members to do to dine out safely, including the nicest way to handle talking to a waiter. I do the same thing. And always eat before going to a party. It’s ok to talk to the hostess first and find out what is being served that way you have advance warning to get thru the line first before the utensils get mixed up, or make a dive for the shrimp and veggies and leave everything else alone. Nothing worse than going to a wedding or banquet and finding out there
      is nothing you can eat!

    • Mark Davies
    • November 1, 2013
    Reply

    I’ll date you anytime!

    1. Haha thanks Mark

  12. Reply

    Love your articles Kirsten. Keep em coming!

  13. Reply

    Love your articles Kirsten. Keep em coming!

  14. Reply

    This is truly an incredible story. I AM the friend visiting Kirsten from out of town, and am a FOODSERVICE Broker dealing exclusively in Organic and Gluten Free products. This experience opened my eyes for the need to further educate foodservice operators to the Real Dangers of what they unknowingly are doing with their Gluten Free (or rather lack of) initiative. To see Kirsten’s situation first hand has stenthened my passion to get the message across how serious this situation is to Celiacs. The only good thing that comes from my experience is a deeper commitment to spreading the word. Thank you Kirsten, you have one more person who is now able to help Change thousands of foodservice operators and Management Companies. Let me help!
    Fred Steiner
    http://www.fmsproducts.com

    1. Thanks for your support Fred 🙂

    2. Thank you for your efforts on behalf of my members and all of us who live this way! Maybe we can start getting somewhere! Kirsten, I think we are on the same page. My family and friends used to consider me a real drag until my eldest daughter became a vegan so now, if we go out, we have to consider if she can eat and if I can eat so everyone is more conscious of menus and kitchen practices. Through GIG, I have been trained to help restaurants set up kitchens to be compliant, and I have witnessed some real beauties – real problems.Our mission is awareness, education and support not only for members but also for the community at large. Things are getting better than they were 5 years ago, but we still have a long way to go. Your friend Fred is in a great position to do a lot of good in this area!

      1. Things are definitely better than they were when I was diagnosed December 2010. But you take the good with the bad as the education continues. We will get there one day because we will make it happen!

  15. Reply

    This is truly an incredible story. I AM the friend visiting Kirsten from out of town, and am a FOODSERVICE Broker dealing exclusively in Organic and Gluten Free products. This experience opened my eyes for the need to further educate foodservice operators to the Real Dangers of what they unknowingly are doing with their Gluten Free (or rather lack of) initiative. To see Kirsten’s situation first hand has stenthened my passion to get the message across how serious this situation is to Celiacs. The only good thing that comes from my experience is a deeper commitment to spreading the word. Thank you Kirsten, you have one more person who is now able to help Change thousands of foodservice operators and Management Companies. Let me help!
    Fred Steiner
    http://www.fmsproducts.com

    1. Thanks for your support Fred 🙂

    2. Thank you for your efforts on behalf of my members and all of us who live this way! Maybe we can start getting somewhere! Kirsten, I think we are on the same page. My family and friends used to consider me a real drag until my eldest daughter became a vegan so now, if we go out, we have to consider if she can eat and if I can eat so everyone is more conscious of menus and kitchen practices. Through GIG, I have been trained to help restaurants set up kitchens to be compliant, and I have witnessed some real beauties – real problems.Our mission is awareness, education and support not only for members but also for the community at large. Things are getting better than they were 5 years ago, but we still have a long way to go. Your friend Fred is in a great position to do a lot of good in this area!

      1. Things are definitely better than they were when I was diagnosed December 2010. But you take the good with the bad as the education continues. We will get there one day because we will make it happen!

    • marcia
    • November 1, 2013
    Reply

    Kirsten, it is unfortunate. Having Celiac has been no picnic for me. I also suffer from distrust & am scared to dine out unless I know the restaurant & their practices. I had a favorite, and they too advertised GF & allergy awareness. Last week was my final straw, so I called the mgr once I was home. Even though I expressed my situation to my server & how it went beyond the food itself, communication was lost after the chef prepared the food. The mgr said up to 7 people could handle my food so cross – contamination was possible. My entired body hurt with all joints swollen. It takes approx 6 weeks to recover & its never 100%. The mgr apologized & recognized the gap. I said if my reaction was fatal we wouldn’t be talking. He offered me compensation, which I refused. It was my favorite restaurant but I said I could not return until they change. There are too many places where they lack education to handle CD. One friend told me I just need to only eat at home. Sad but safe. Cooking schools are beginning to educate students but it is still slow. 🙁

    1. Marcia, medical schools are finally starting to educate as well, in nutrition also. We have been using pills as a crutch for so ling and negating the true source of the problem. I can’t believe it takes 6 weeks to heal, holy moly. What are the symptoms you go through in that period?

    • marcia
    • November 1, 2013
    Reply

    Kirsten, it is unfortunate. Having Celiac has been no picnic for me. I also suffer from distrust & am scared to dine out unless I know the restaurant & their practices. I had a favorite, and they too advertised GF & allergy awareness. Last week was my final straw, so I called the mgr once I was home. Even though I expressed my situation to my server & how it went beyond the food itself, communication was lost after the chef prepared the food. The mgr said up to 7 people could handle my food so cross – contamination was possible. My entired body hurt with all joints swollen. It takes approx 6 weeks to recover & its never 100%. The mgr apologized & recognized the gap. I said if my reaction was fatal we wouldn’t be talking. He offered me compensation, which I refused. It was my favorite restaurant but I said I could not return until they change. There are too many places where they lack education to handle CD. One friend told me I just need to only eat at home. Sad but safe. Cooking schools are beginning to educate students but it is still slow. 🙁

    1. Marcia, medical schools are finally starting to educate as well, in nutrition also. We have been using pills as a crutch for so ling and negating the true source of the problem. I can’t believe it takes 6 weeks to heal, holy moly. What are the symptoms you go through in that period?

    • Christina
    • November 1, 2013
    Reply

    This is exactly how I feel. It helps hearing that I’m not alone. Thank you for sharing.

    • Christina
    • November 1, 2013
    Reply

    This is exactly how I feel. It helps hearing that I’m not alone. Thank you for sharing.

  16. Ugh this is so frustrating!!! My belly looks like that too. And my brain tingles and makes it hard to talk. Then I get an anxiety attack and break down crying. Then my body feels like crap for 2 weeks (aching, sweating, not sleeping, etc.).

    I too am weary of trying to eat out safely.

    Feel better.

  17. Ugh this is so frustrating!!! My belly looks like that too. And my brain tingles and makes it hard to talk. Then I get an anxiety attack and break down crying. Then my body feels like crap for 2 weeks (aching, sweating, not sleeping, etc.).

    I too am weary of trying to eat out safely.

    Feel better.

    • Mayda
    • November 1, 2013
    Reply

    Thank you so much for sharing your story my little man just turned 5 & was diagnosed with Celiac in March we where just told he also has Crohns. It’s hard to explain to people how much damage just a little gluten can do to him.
    I appreciate your pictures as well that is exactly how he gets, I recently took him to a new pediatrician before she even looked at his chart & the fact sheet I filled out for the reason I was there, she took one look at him & turned to me & my husband & said & I quote …. “He needs to loose weight he is FAT look at that gut, looked at him & said your to young to have a gut”

    Mind you he had just been glutend & was having a reaction like yours. His belly gets so large that it as you say like a balloon ready to burst.

    Needless to say we did not even bother, we got up my husband looked at her & said & you call yourself a Dr read your new patient fact sheet & inform yourself before she open your PIE Hole,,,, ! And we walked out. What is sad is she had come highly recommended by a friend.

    • Mayda
    • November 1, 2013
    Reply

    Thank you so much for sharing your story my little man just turned 5 & was diagnosed with Celiac in March we where just told he also has Crohns. It’s hard to explain to people how much damage just a little gluten can do to him.
    I appreciate your pictures as well that is exactly how he gets, I recently took him to a new pediatrician before she even looked at his chart & the fact sheet I filled out for the reason I was there, she took one look at him & turned to me & my husband & said & I quote …. “He needs to loose weight he is FAT look at that gut, looked at him & said your to young to have a gut”

    Mind you he had just been glutend & was having a reaction like yours. His belly gets so large that it as you say like a balloon ready to burst.

    Needless to say we did not even bother, we got up my husband looked at her & said & you call yourself a Dr read your new patient fact sheet & inform yourself before she open your PIE Hole,,,, ! And we walked out. What is sad is she had come highly recommended by a friend.

    1. I have heard horrible story after horrible story about doctors not listening to their patients and even refusing to do testing, either because of their own lack of knowledge or their ignorance of Celiac disease existing. It is unbelievable her original RX was he’s fat and needs to lose weight, that is shameful. I ma glad your husband spoke up and you all got the heck out of there. Have you found another pediatrician yet?

    • Susan Boyko
    • November 1, 2013
    Reply

    For the past few years I could not figure out why one day my clothes fit fine, then the next day “forget it”. Then I was diagnosed with CD. I know how difficult it must have been for you to share this story and pics. From the bottom of my heart – Thank You! Maybe it’s because there is no pill for CD that makes it hard for people to recognize it as a true disease. All I know is I hope your story helps people wake up to the reality. Again, thank you!

    1. It’s sad if there’s not a pill it’s not really a disease. Celiac Disease wasn’t even accepted as a true disease until 2003.

      1. Reply

        Well, it was recognized in Europe, tested for, and the food chain for gluten free food (labeled foods) were scientifically tested and verified (parts per million) while the US government and industry took a decade to even begin to get serious about this. Some of you may also be very sensitive to the new proteins and virus-like DNA changes that we have introduced into our GMO foods and never tested (or even looked for) until recently. So that milk, those strawberries, corn, etc. just might be gluten-free, but the food-like stuff you eat and think is “whole food,” may be frankenstein food, not really something you are able to ingest without serious immune reactions or other toxic long-term impact.

      2. Reply

        Keep in mind that Canada and Europe has profited more by exporting their tested gluten-free, organic, and non-GMO foods than the US. It’s all about profits. Until more people stop eating in restaurants and start purchasing more tested/certified gluten-free foods, organic, and non-GMO foods, the larger US agri-food industry, supply/distribution chain, and uber grocers will not change their business model. At least we have growing organic sections in Trader Joes, Whole Foods, Meijer, Kroger, and other big-chain grocers. But we don’t have anything close to the EU stores like Coop and Migros, who offer exceptional quality whole, non-GMO, and gluten-free foods.

    2. Thank you Susan 🙂

  18. Reply

    I just gave up eating out! I feel I can´t be safe enough out there.

  19. Reply

    I just gave up eating out! I feel I can´t be safe enough out there.

    • Tina Lombardi
    • November 1, 2013
    Reply

    I’ve just stopped eating out, really. I’m not trusting any restaurants anymore.

    • Tina Lombardi
    • November 1, 2013
    Reply

    I’ve just stopped eating out, really. I’m not trusting any restaurants anymore.

  20. I’m so glad you shared this. I get that same pregnant bloat and soy does it to me, too. Now that GF is everywhere, I feel like I get sick a lot more at restaurants than I used to. Crazy, right? And so frustrating. We most certainly do need standards in place for restaurants.

  21. Reply

    Today at lunch I ate yogurt and strawberries (which I eat everyday with no problem) and a bowl of peas and carrots. Within an hour, I was cramping so badly that I had to excuse myself from my classroom. Three hours later, I’m still bloated and in pain. I have no idea how the gluten snuck in, but it did. Even when we try to be safe and careful, the gluties can still attack. And that’s what makes it so hard. Thank you for sharing, and you’re definitely not whining. You’re helping others see what we experience all too often. Eating should hurt.

    1. That’s the worst. When no matter how careful you are, something still can get ya… Hope you’re feeling better 🙂

    2. Someone used a contaminated spoon to dish up those peas and carrots, or they were cooked in a broth containing gluten, or handled by someone with contaminated gloves.

      1. It’s amazing how small the amount takes to get people ill

    • Donna
    • November 1, 2013
    Reply

    Thank you so much for sharing your story. I have CD as well and the same thing happens to me…immediately as well!!!!! You HAVE to rush home because the gas pain is so intense!!!!! Maybe, just maybe someone withOUT CD will read this blog post and GET IT!

  22. Reply

    We’ve all been there Kirsten and it sucks. Once the fad dies, I have a dream that we’ll be taken seriously again. Time will tell. Feel better.

    • eden
    • November 1, 2013
    Reply

    Thank you so much for this brave post !!

    Before I was diagnosed I couldn’t understand why some days my clothes would zip, and other days I was “fat”…. I’m Not Fat… I’m swollen and horribly uncomfortable. Now I know that I’m not a bad person with no self control… I have celiac disease and my body is in rebellion mode at some contamination!!

    1. it is a horrible feeling to think that you have no control or no self control. It’s a relief when you find out that it is not your fault.

  23. Reply

    My twin sister has this problem but for some reason I don’t. We both have Celiac Disease and both have neurological issues. My sister has seizures now. I also have Dermatitis Herpetiformis because of the Celiac. Right now I have 3 infections going on and the doctors don’t know why so I have to go to a Hematologist. Which by the way the woman at the desk kept calling “the cancer doctor” so I was really scared still am. I also have hand tremors and stutter, I have medication that helps but on certain days it’s embarrassing. And people still say to me “oh so you can’t have bread, right?” They don’t get it.

    1. Wow Dana, that’s incredible. For the record on a side note, that front desk lady is a moron. How long have you been gluten free for? are you ‘free’ of anything else like dairy? I have had neurological issues as well with vertigo, slow focus, etc. I also have had the hand tremors, though luckily not anymore since I have been gluten and processed food free. It would scare the hell out me and I was afraid I had MS or something else. I do stutter sometimes as well, but I always chalked it up to my mind working faster than my mouth, but thats interesting…

      1. Kirsten, your first mistake was not calling the restaurant first and talking to the chef/manager/owner regarding their process of preparing a gf meal. Do that with every new restaurant you go to, ask direct questions, Get answers. If you don’t like the answers, get up and walk out. This is what we teach in our classes and at our support group meetings. Always call before 11:30 or after 2, not during busy times like lunch hour. Meals must be prepared in a clean area, with clean utensils, clean gloves, separate frying pan, not the flat top, not the regular toaster but a special one. If any restaurant is advertising gf meals, ask if they have been certified by http://www.gluten.net or other certification program. If they say no, ask who helped them set up the kitchen, Remember, it iss your responsibility to do so as a consumer.

        1. Yes I’m aware, I say the same thing. Always Read Labels, if you cannot read labels then ask the hard questions. If you do not get the answer you need then do not eat it.

          But if I do not experience it myself then I cannot accurately tell people this place and all their GF items are not safe and help them make it better for everyone. Now maybe after talking to the manager again and corporate, things will start to change in the restaurant and education will begin.

          There are far an few places I can go for safe eating. So when a place like this opens in my neighborhood, I’m hoping after my experience, I can help others and shed some real light on what can happen by the smallest amount of cross contamination.

          I have been in the restaurant industry for more years than I would like to admit and still am so I know exactly what goes on in kitchens and how easy it is to get glutened. As well as how clueless people in the industry really are, even when they do pay special attention.

          People with the disease are still trying to figure it out, imagine the people who are fixing your food who have no idea.

        2. I also have to consider that it is not just about me. If I am with a group, there has to be some kind of middle ground. I can’t expect my friends and everyone else to revolve around my eating habits. Which is why I feel like a prisoner because I do not go out much. My friends and associates try their best to accommodate my needs but that is not always feasible. Sometimes asking all the right questions and getting all the right answers still is not enough and we must roll the dice and hope for the best. I want to change that through continued education and regulations.

        • J Binder
        • November 7, 2013
        Reply

        After a year off of gluten, my hands aren’t numb anymore and I can play the piano and flute like I used to. I was a music major in college so numb hands was a huge bummer. I also found out that I cant tolerate dairy and soy. I can tolerate dairy if it’s cooked, but no soy, under any circumstances, will ever cross these lips again! Wow! What a difference!

  24. Reply

    I double over in pain, The pain is so wrenching, then the other symptoms. I feel for you. I really do.

      • Debbie Coppens
      • November 1, 2013
      Reply

      I too double over in severe pain, then spend lots of time in the bathroom and when I can safely leave the bathroom I am totally wiped out, exhausted and just want to sleep. I also get really hot, break out in red splotches on my face, neck, chest and stomach. Then the rest of the symptoms come…bad headache, aching joints, cold and hot flashes, body pain, super tired even after a nap (if possible), the bloated stomach and very irritable. If I am lucky, it is just for the rest of day but most times I am not that lucky. Depending on the amount of gluten I digested I can be sick any where from a day to 3 weeks. Some people just don’t get it and say stupid stuff like I am over reacting…really?? Who would want to be that sick and that much pain? I also have a hard time eating out anywhere especially people’s homes. It took me a long time to learn to cook and investigate gluten free cooking so how can I trust someone that ‘thinks’ they know It after Googled it. I agree restaurants that want to serve gluten free food should educate ALL of their staff. I have only been to 3 places that the staff knew their stuff: Red Lobster, Plae Bistro, and Red Robin. Good luck in your recovery process, I feel for you, I really do! 🙂

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Hi, I’m Kirsten

Kirsten is a Registered Dietician in training and a Gluten Free Nutrition Consultant. She has a Bachelors from Illinois State and is working on her Masters in Nutrition at Metropolitan State University in Denver, CO. After graduation she will continue her clinical training and Registered Dietician certification.

Her goal is to provide a path for healthy living to individuals who are seeking a tailored made lifestyle specific to them another needs. Kirsten believes that everyone is different and no one diet can work for everyone, which is why fad diets rarely work for the long haul.

Kirsten also works to make the lives easier and healthier for those with Celiac disease through education and specific tools that have helped her navigate celiac and the gluten free lifestyle maze.

Living the gluten free lifestyle is not an easy one and can be very overwhelming: from testing to grocery shopping, to eating out and deglutening your own household, I am here to walk you through the process from beginning to end. With tips, tricks, humor, healthy recipes and sometimes just an understanding ear, I will guide you seamlessly through.

I was diagnosed with celiac disease in 2010, so I understand completely the trials and tribulations of living the gluten free lifestyle. Please contact me for more information @ glutenfreegal1@gmail.com

 

 

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