Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?


It's Just A Marketing Fad, Just Like Atkins!?

Rate this topic

Recommended Posts

My sister had a brain scan that scared the horse hockeys out of her last year. She was in tears when she finally told me about the "white spots", UBO's. She was especially upset when she couldn't get into the neurologist for 8 weeks. I read up on it and tried to reassure her but she would have none of it. She lives for the drama. When she went and the dr blew it off, she wouldn't have any of a celiac indication. No surprise, she's diabetic and hasn't changed her diet at all. I've told her from the beginning to be tested for celiac disease because she's my first degree relative but she won't. Her daughter's health is precarious but she won't test either. I just have stopped bringing it up. We seldom talk anyway so I don't see the point.

Tell me about it. Denial is thick in many families etc. Boyfriends too in my experience--as well as the AMA.

Meanwhile, what happens to the "UBO's" after one has been on an anti gluten diet after a while. Do they stay or go away? Are they in any way significant? Any body know??


Share this post

Link to post
Share on other sites
What those white spots likely are is 'UBO's, or unidentified bright objects. My neuro was clueless about them also. If he hadn't been I would have been diagnosed celiac years sooner. UBO's are recognized as being associated with neuroimpact celiac disease, especially when there is ataxia. When my neuro saw them he just shrugged his shoulders and said they meant nothing after he had done a spinal tap on me to make sure it wasn't MS. Finding UBO'S is diagnostic of celiac, in some other countries and in particular in children.

Kristi --

Thanks for the information! You are the FIRST person who has actually informed me about that. The primary neurologist I saw for the longest time DID note the cerebellar degeneration. The neurosurgeon he sent me to said that there wasn't.

I saw another neurologist for a second opinion because my sister -- a workers' comp adjuster - didn't like my primary. THAT neurologist was the one who eventually fired me! He told me that there was no cerebellar degeneration and he was the one who yelled at me about the MS. Also, I had nuchal rigidity from the lyme -- couldn't put my chin to my chest -- and he INSISTED that I was trying to be diagnosed with MS. I told him that I didn't WANT to have MS -- but I DID want a correct diagnosis.

The last neurosurgeon I saw was one I shadowed during my last clinical at the children's hospital here. He actually SHOWED me= placing ALL of my MRI's up - the chronological cerebellar degeneration from the Celiac. He didn't know about the UBO's, though. I will give him a call tomorrow and tell him this. He's VERY open to learning from his patients. I'm fortunate.

You are so well-informed. I really appreciate you. While I'm NOT happy that I have the spots on my brain (that DID keep getting bigger -- the last neurosurgeon mentioned that, as well), I AM happy to know WHAT they are, WHY they are there and that they won't get any larger because I've been gluten-free for so long now.

Thank you VERY much.



Share this post

Link to post
Share on other sites
Tell me about it. Denial is thick in many families etc. Boyfriends too in my experience--as well as the AMA.

Meanwhile, what happens to the "UBO's" after one has been on an anti gluten diet after a while. Do they stay or go away? Are they in any way significant? Any body know??


Just before I got online, I heard my mother talking with my daughter. She is going BACK to the GI doctor. She has been tested for everything from A to Z. I asked her if she had told the GI doc that I had celiac disease. She said, "No." I said, "Have you been tested for it?" She said, "No." She has the big D all night long -- but didn't disclose to the GI doc the FIRST time she saw her that her daughter has Celiac and hasn't been tested . . . .

Sheesh . . . .

Share this post

Link to post
Share on other sites

I know exactly how it is... "don't worry about what they think or say" is what I hear. But for those who are like me, I care about it most times.

Here at my workplace I think some of my coworkers think I'm crazy or I'm faking it for attention. Seriously would I fake something as serious as this?? I honestly had a guy say, "Can't you take a pill for it?" I said, "No, it's not like an allergy...it comes from my intestines...I can't process or absorb the substances" and he said...I quote, "Well get an intestine transplant!" Just a few months ago I printed out a fact sheet that really got graphic on long term and short term complications down to explosive diarrhea. Until then he would tell me to eat a donut...and I'd say I cant and he'd say, "Not even one?" "No not even one..." "How bout a little piece?" "NO, not even a little piece." "Can you lick it?" "NO If I lick it I may as well EAT it!" Since the print-out, he's mentioned NOTHING on the subject.

While he laughed hysterically I sat and finished my lunch. I said no more. I was fuming. Later I went to him and explained to him that while it's funny to joke and might make it seem better, it in fact does NOT do anything but make it worse.

We have "food" days where everyone brings in food. One day a coworker (who is famous for his sausage balls) asked what kinds of flour to use instead of bisquick. I told him I would bring him some and one of the girls piped up saying, "Umm how bout you just not worry about what she wants and just worry about the other 12 people...she's 1 out of 13." I replied, "First off he ASKED me a question and I was simply answering it. Second, making gluten free sausage balls would be better for all of us anyways, and I guarantee at least one other person IN THIS OFFICE either has Celiac or has an intolerance..." She didn't say anything else. However now her favorite thing on food day is my Chocolate Chip Cookie Surprise made with gluten free cookies. What a coincidence!

One of our new girls on our last food day (recently) asked me the week of to give her a list of what brands to buy of little weeny smokies and what kind of chips and what kind of salad dressing. I gave her a list with different items. She went shopping the night before and the next day she said, "Wow I didn't realize how hard it can be. I had to take my husband to help me and I feel really bad for you now." She said "There needs to be a documentary titled A Day In The Life of A Celiac!!"

A guy I share my cubicle wall with is overweight, has high bp, and is probably intolerant. He will most times not eat whatever I bring in on food days because he "likes gluten and is allergic to non-gluten stuff" and says he can taste that it's gluten free...which is a crock of bull hockey. He wouldn't know the difference if it slapped him in his red face. I bring carrot cake now because he hates that kind anyways.

You do what you have to and for those who are in denial or refuse to take it seriously, they can be sick and be unhealthy all they want to.

Share this post

Link to post
Share on other sites

If this diet is a marketing fad, it's a cruel joke. After all we have to give up in our diets and alter in our social lives just to be healthy, it better NOT be! :ph34r:

I've found with family members that a lot of it is just patience and continual education. My mom has been supportive from the beginning, but I don't think she's had a true grasp of how serious my condition is until recently. A while back I noticed her intently reading my celiac newsletters from my support group....it was reassuring to see.

I have a friend or two who still think I'm overreacting about everything. I'm hoping one day they'll get it.

Share this post

Link to post
Share on other sites

If this diet is a marketing fad, it's a cruel joke. After all we have to give up in our diets and alter in our social lives just to be healthy, it better NOT be! :ph34r:

Isn't that the TRUTH?????!!!!

I want a Krispy Kreme doughnut so badly right now I can hardly stand it :rolleyes:

Or a REAL pizza -- or that Hawaiian bread with the Knorr soup mix dip . . . the list continues :P

Marketing fad? Since my celiac is neurogenic, it must be marketing for the wheelchair that ended up costing over $7k.

Share this post

Link to post
Share on other sites
I have been gluten-free for nearly a year. I was initially real excited to have a diagnosis and not puke everyday, but now its setting in that I will never have certain food items.

What really irks me though is that when I eat with certain extended family and friends, they make comments about how the diet is a marketing ploy, or a silly fad, or how fifty years ago, no one had celiac. I also get comments that I shouldn't burden my husband with having to buy such expensive food items (not really true at all- I do the diet very cheaply). I really feel that the same extended family members that tease me, are actually carrying genes for celiac. Quite a few people in my family have had colon cancer, and other serious digestive disorders. There is no way I could convice them to go in for a test, if they insist the gluten-free diet is just marketing.

So can anyone offer me some tips on how to respond? I usually just say that I'm happy that I am healthy, not throwing up, and weigh over 95 pounds for the first time in years.

I'm still dealing with this myself. Despite the slew of digestive malfunction on my grandmother's side, somehow this condition (although in my case after only a year of noticable suffering) has been labeled by them as "annoying." I tend to take it personally when my family views it as such and very often people I barely know will go way out of their way to accomodate for me and try to make me feel better.

I think you're explanation is probably right on target though - it's a fear reaction. They're afraid that they might have it too and the thought of not eating anything with gluten in it (especially since they'd be addicted to it if it's problematic for them) seems absolutely tortuous.

My best suggestion is just to keep feeding them accurate info and stats. Especially information about symptoms and possible long-term effects of the lack of treatment. I don't know about your family, but denial can eventually become concern in mine if it gets on their minds enough.

Just an idea :)

Share this post

Link to post
Share on other sites

FEAR comes first, then once they find out it's DENIAL.

My aunt. She will NOT go gluten free even though she is exibiting the same symptoms my mom did. She actually had a horrible break out of a rash (DH) and has had it several times since (three years ago). She'll do the gluten free pasta's, but still eats regular breads and such.

Share this post

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Top Posters +

  • Upcoming Events

    • March 20, 2019 04:00 PM Until 08:00 AM
      Celiac Emotional Healing Support Group
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Forum Statistics

    • Total Topics
    • Total Posts
  • Who's Online (See full list)

  • Forum Discussions

    So i recently had a baby and 3 months postpartum I started celery juicing and after juicing my stomach would be in so much pain. So I stopped it for a while and a whole month no pain or issues. I made an apt with a GI doctor to just get my blood work checked everything came back great except the Ema it was 1:20 he said it was strange because all the other Celiac panel test were negative my Ttg and the genetic screening even. So I made an apt with another doctor for second opinion she stated that
    Potatoes are good for breakfast! Your concoction sounds pretty good. K, how about this? Peel & dice potatoes, fry them in just enough olive oil to keep them from sticking in a skillet until they begin getting crispy. Toss in diced sweet peppers or maybe chili peppers, onions to soften. I know you're not doing egg yolks b/c of iodine but you can do the whites. Pour egg white on top until the white is done. If you have a steak or some leftover steak, you can heat that on the side. YUM!
Hi Mom, I am so sorry you're getting the run around. Yes, the links worked for me too & that poor little thing! Cyclinglady gave you excellent advice. I really can't add anything to it but everything she says is right on. Keep advocating!  Read this: https://www.sjsreview.com/8752/features/sophomore-establishes-celiac-support-group/ I found how you can contact her. GenerationGF.Houston@gluten.org Here's the web page. Scroll down to the TX groups. https://gluten.org/k
  • Blog Entries

  • ×
    • Create New...