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I Wrote To Oprah Too

mcle8232

By mcle8232
in Publications & Publicity

Recommended Posts

mcle8232 Apprentice
mcle8232
Posted

There is a limit of 2,000 characters so I wrote this letter in 1,942 characters (including spaces) :D

It is a disease that is even more prevalent in America than diabetes yet most people have never heard of it. Celiac disease has been shown to affect an estimated 1 out of every 130 Americans. Still, only 1 in every 4,700 patients leaves the doctor's office with this diagnosis.

You may have gotten food poisoning from salmonella or spoiled food, but for someone with celiac disease this reaction can happen every single time they ingest anything with wheat flour in it. That includes cookies, cake, pizza crust, ice cream cones, and even many things you might not suspect like almost all soups. Gluten is the poisonous protein found in wheat flour, and also barley and rye.

I am a 27-year-old celiac, diagnosed two years ago, but I have suffered with a laundry list of symptoms for nearly half of my life. My goal is to someday soon be able to say "I

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minibabe Contributor
minibabe
Posted

that would be absolutly amazing if we could be Oprah to do a show on this. it would bring the awareness level up and people would possibily understand alot me. Good luck! :)

celiac3270 Collaborator
celiac3270
Posted

Thank you for writing...that would be amazing if she did a show on it--with all the viewers and influence she has...wow...keep us posted if anything comes of it!

rmmadden Contributor
rmmadden
Posted

Excellent letter! Let's hope it sparks some interest/publicity on celiac disease.

A few weeks back I wrote to the food network about doing a show on Gluten-Free cooking. Specifically, I emailed the Emeril Live show as I like to watch it and other Food Network shows. I said pretty much the same thing that 1 out-of 133 American's has Celiac but yet most people are clueless. I asked them for some good bread recipe's and other "Tasty Gluten Free" choices.

Let's keep our fingers crossed!

Cleveland Bob :)

Guest barbara3675
Guest barbara3675
Posted

On "Yes, Dear" last night, in the opening segment, the brother-in-law said to Greg "you took gluten-free carrot cake without nuts to the office" and Greg said "that is because I wanted to be able to eat some too" It is good to hear glueten-free being mentioned in the natural course of things. We are headed in the right direction here folks. However, if the QUEEN of television did a show on it, that would be supreme. If you hear that she is going to do one, please let me know, because I am working at that time and I would have to make special arrangements to tape it. Thanks....Barbara

bmorrow Rookie
bmorrow
Posted

Great letter! I hope that Oprah will become interested in learning about Celiac and decide to do a show. That would increase the public's knowledge and awareness of it faster than anything.

angel-jd1 Community Regular
angel-jd1
Posted

That's hillarious that "yes dear" said that on their show, a year or so ago they made fun of gluten intollerance. They had a play date with a child who was gluten intollerant and didn't want to go because of that. I'm almost certain it was Yes Dear. Maybe someone else can help me remember for sure.

I hope that your Oprah letter works. We had a huge letter writing campaign to her about 2 years ago. Nothing ever came of it :( Maybe if people keep writing it will eventually make a difference OR she will get sick enough of us and put us on a show :lol:

Good luck!!

-Jessica :rolleyes:

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Deby Apprentice
Deby
Posted

Wow, Oprah's show would be great. Good luck.

The Food Network would be great too, but there would need to be a cook who knew something about gluten-free cooking. I'd be disappointed to have a show cook gluten-free foods that are already safe, like veggies and meats.

celiac3270 Collaborator
celiac3270
Posted

Wow...all of this was really interesting to read :) (Yes, Dear, The Food Network, a previous Oprah letter-writing spree...). I never got to take part in the last letter spree....if this one letter (with very good statistics included), doesn't do anything, maybe we should organize another! Write letters every year until we get Celiac Disease on the show! :lol:

mommida Enthusiast
mommida
Posted

I just wrote to Montel. He may be more sympathetic for Celiacs because of the M.S. Did I read somewhere that a gluten free diet was suggested for M.S.?

I would love to see Oprah, or Montel, cover Celiac. Both are capable of a responsible show with a major impact.

Laura

megzmc3611 Rookie
megzmc3611
Posted

I saw the episode of Yes Dear this week!

I also noticed that when Greg replied to his brother and law about the gluten-free cake and wanting to be able to have a piece too,

Greg was holding a can of beer (budweiser it appeared to be)!!

So, I guess they are trying but still do not have all the facts of our disease pinned! :)

jcgirl Apprentice
jcgirl
Posted

Last night on a re-run of King of Queens, Carrie was wearing a shirt that said Gluten Free with some other writing under it but it was to small to make out. Shows like the Good Morning American and Today would also be great options to get the word, espcially sense many people have them on while getting ready in the morning.

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    • knitty kitty
      High DGP-A with normal IGA

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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