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

[YoloGx]

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??

Bea

[still tiredofdoctors]

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.

((((((((hugs))))))),

Lynne

[still tiredofdoctors]

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??

Bea

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 . . . .

[Swimmr]

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.

[heatherjane]

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!

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.

[still tiredofdoctors]

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!

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

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

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

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

[TownieHeather]

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

[Swimmr]

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.