Forums: Discussions for entrepreneurs and small business.

The discussions that started yesterday about gluten free cookies and Celiac Disease got me to thinking.

Since one out of 133 Americans on average has Celiac Disease, and 29 out of 30 Celiacs are undiagnosed... with only one diagnosed Celiac in the SUN community that I know of (entreprenerd), I was wondering how many more people in the SUN community have this disease and don`t know it?

Celiac Disease is the most under-diagnosed and mis-diagnosed disease in the U.S. It takes an average of 11 years from onset of symptoms to diagnosis. In my wife`s case it was 30 years before she was diagnosed. The symptoms are most frequently mistaken for irritable bowel syndrome or Chrone`s Disease. Ignorance of the disease in the medical community and in the general population is a major reason why diagnosis can take so long.

Undiagnosed and untreated, Celiac Disease leads to many serious conditions, such as osteoporosis, iron deficiency anemia, chronic fatigue, infertility, and cancer. If my wife were diagnosed as a teenager when her symptoms began, we might have been able to have children.

The disease is so common and so frequently mis-diagnosed, and the consequences so serious that I believe it`s worth learning more about it. You, or someone you know, may have it and not know it. Chances are good that several StartupNation community members have it and don`t know it. I wonder how many.



-------------------------

Wow, I think I`m going to give this info to my sis because she has alot of the symptoms!  Thanks for sharing.

Jilly

I know I`ve had a lot of the symptoms and I`ve been trying a very wheat-reduced diet lately. Of course, I`m always the over-doer. I`ve eliminated several things at once, so I`m not sure which of them is actually the culprit, yet.

-------------------------

Thanks for posting that Steve!

Just so everyone knows, I am one of those people that had been misdiagnosed for years. I did not have the typical celiac symptoms at all - in fact I always had an "iron stomach". I did, however, suffer from ailments that were caused by years of malnourishment (chronic anemia, infertility, weak bones, autoimmune issues and more). I probably would have been suffering much longer if my son hadn`t come down with the classic symptoms as a baby. I researched it and talked to his pediatrician and it turned out he had celiac. During my research, I realized that I probably had it too. I`m what is known as a "silent celiac". My blood test was negative, but many people who have it even test negative with a blood test. (Some people lack the thing that triggers the test.) The end-all-be-all with celiac is that if you feel better on a gluten free diet, then you know you have celiac, or at least gluten intolerance. My son and I noticed huge improvements even within 48 hours of the diet, and we`ve been gluten free for 2 1/2 years now. When my younger son was a baby, he didn`t react well to gluten either so he is also gluten free.

Many, many people have celiac, but many more are gluten intolerant. I have read that it is as much as 1 out of 7 in the US. Your risk goes up much further if you have a relative with celiac or gluten intolerance. If you have a problem with gluten, you are at risk for many diseases such as osteoporosis, cancer, thyroid disease, diabetes, and lupus to name a few. Autism is also linked with celiac. (I have autistic family members.) Once you go gluten free, your risk normalizes with the rest of the healthy population.

I hope this helps someone. You guys don`t know this but I actually host a celiac site for people in my area (NH). It`s www.nhceliac.com. I pay for it with my own money and it has really helped us all connect locally.

Thanks for listening!
Chris

I am forwarding all of this information to my sister. She lives in
the UK and has been suffering from all of these symptoms,
however her Dr has been fobbing her off . At least now she will
have all the info to go and see him with. Hopefully she can get
it figured out. Thanks for all your information.

-------------------------

Sarah Founder www.sarahsperfectgift.com Gift giving made easy

We have suspected my daughter has Celiac`s now for the last year (she is just 2) but so far the tests are negative.  We unfortunately had a horrible GI doctor who left us hanging without any suggestions.  After a meeting with our regular peditrician today (who happens to have Celiac`s), she suggested we try to eat gluten free for a month to see if the symptoms improve.  So we are starting up asap. 

I actually had to have a wheat-free, dairy-free, soy-free diet while nursing due to her colic so we are familiar with the diet.  I am suspecting that I might actually have it as well (since I can no longer tolerate the foods I used to prior to this elimination diet) 

My poor baby is miserable so I will try anything!  Chris, I noticed your dips can be used in food preparation so I will be visiting your site either tonight or tomorrow.  If you have any good suggestions on what your kids like - please pass them on!

The right doc makes all the difference in the world. Sounds like you may have found her.

Even if you have the Celiac genetic predisposition it takes a physical or emotional stress event to trigger the auto-immune disorder. In your case pregnancy could have been that trigger.

Many parents tell us our cookies are their kids` favorite. Our Vanilla Wafer is great for toddlers. Good luck and keep us posted about any updates. By the way, where are you located?

-------------------------

I`m not celiac, but I do avoid wheat and other gluten grains 99% of the time.  I have a feeling that celiac disease is more prevalent than reported and everyone I`ve known that dropped gluten grains from their diet has benefited.  This leads me to believe that there is celiac disease and then there is a subclinical manifestation that many other people have.  Because it`s never suspected as a non-overt reaction to the allergenic gluten, people continue to eat it with abandon as the problems of "aging" mount.  Grains in general are not a normal food for humans.

-------------------------

Scott
http://modernforager.blogspot.com

Steve - I will be trying your cookies as well!  I have tried many items in the past and I think it`s really just trial and error.  Fortunately we have a great bakery in town that makes a cupcake you would never know is gluten-free.   (we are in Denver)

Hi

I am new to start up nation but I also have celiac. I have been on the gluten free diet since 1980. All four members of my family are on the gluten free and casein free diet.  I had the disease as a child but went through years of being sick with multiple stomach issues before finally being diagnosed in 1980. Although my biopsy was inconclusive my response to the diet was so dramatic that my doctor at the time said to remain on it for life.  I had genetic testing done a few years ago just to reinforce the original diagnosis and I do have the celiac gene.  I have made celiac my personal "soapbox", as my husband would say, talking about it every chance I have.  I  feel that knowledge is very powerful and since so many celiacs are undiagnosed, more people need to be aware of the disease and its symptoms.  I find it very interesting to see new research into the brain connection with celiac and gluten intolerance - it may be that some who suffer from ADD/ ADHD, depression and other types of similar issues may be helped by being on the gluten free diet.

It does take some adjusting to live gluten and casein free but better health in both the short term and long term make it well worth the effort. 

Helen