EVERYONE on this board should be tested for Celiac diease Options

[Bowley Boy]

This is a long read, but it may help someone here.

Frustration:
My moms passing a few weeks ago was hard on us but it left me more frustrated. She was a very active 55 year old who lost a very quick bout of cancer. Everyone, was confused how her disease came on so fast and her doctors really never could come to grips on what kind of cancer she had, which ended up being some kind of stomach/intestinal cancer. My mom's life was normal for the most part, she was a very motivated, self reliant individual. However, there were medical things in her past that were not so normal. She often had serious migraines, she was very thin most of her life, she would have long sleep bouts, especially after a night of drinking in her hey-day after the races. Over her life she had gobs of dental work done. She would also have an occasional fever blister and she had a hysterectomy at the age of 45. I always attributed this to her off and on smoking, even after her cancer diagnosis.

Growing up:
I was a typical kid. I played baseball, soccer, rode BMX and skated. Later I got into wake boarding and fell into my longtime family pastime of auto racing. Through all this I had some weird issues in my life that I never really understood. Going into HS, I looked like a 6th grader. I often got headaches and felt like I had low blood sugar at times. I would also find my self out of it. School work was a challenge as I felt like I had to work 4 times harder than everyone just to understand the basics. Later in my life, things panned out but I would still have this feeling of being out of it at times and would get serious stomach issues from time to time. My blood pressure was up and I started getting heart palpitations and chest pains. Over the last few years I started working out and avoiding fast food. I stopped drinking coke and moved to drinking water "most of the time." While this might have helped, it didn't fix my issues. I was eating Subway everyday, skipping the mayo on everything I was eating. At work, there were times my co-workers would be talking to me later in my shift and I just couldn't focus on everything they were telling me. I chalked it up to just being tired. My doctor said its nothing more than IBS so I just dealt with it. There are countless times I can remember getting into my race car feeling like a complete zombie. I'm thankful I never hurt anyone including myself. How I finished some of those nights is beyond me. Often times people would tell me I looked tired or even on drugs. I just thought they were seeing things and I attributed most of it to CO2 poisoning. Over the last year, I got a serious bout of pneumonia, which I made worse by not taking time off from work or racing. I ended up in the ER with what I thought was food poisoning and had a round of pretty bad headaches. My doc said, "you're just dealing with anxiety and have IBS." (Irritated Bowel Syndrome)

Sunnie:
When we had Sunnie, my six year old daughter, she was healthy but had a few red flags that were just.. well weird. She was very skinny, my mom always accused us of not feeding her. She had this pot belly which we thought nothing of. She had chronic diarrea when we first got her onto food. Under her eyes she looked anemic at times. She would often times wake up in the morning of a stomach ache. We would usually tell her it was just because she hadn't eaten breakfast and after eating she would usually start to feel better. Her attention span reminded me of me when I was a kid. Short. Aside from all that she was/is a perfect little 6 year old. Very kind to people, very thoughtful and her teachers love her. And of course, she loves racing.

Research:
After doing a few weeks of research, I came across something that started to put all the pieces together. Celiac disease. This is a common disease in the US. Up to 1/100 people have it. With Kern County having a population of 800,000, that puts a rough estimate of 8,000 people walking around blindly with this disease. The scary thing is out of all those people that do have it only 3% of people know they have it. Left untreated these people pick up things like headaches, fatigue, skin issues, poor vision, cancers, high blood pressure, diabetes, arthritis, heart disease, bone degeneration and the list goes on and on. Usually, these people (including their doctors) never really understand why they get these diseases other than they just do.

What is Celiac disease?:
Celiac disease is where your immune system attacks your intestines when you eat gluten. Gluten is found in everything from breads, cookies, beer, and just about everything else you can imagine. Your intestines make up around 75% of your immune system. Over time your intestines become unable to absorb nutrients and vitamins which cause deficencies which lead to more sever complications. Many people have no symptoms of the disease until later in life.

Why isn't this screened?:
In Europe all children are screened at the age of 6. In the U.S., no kids are screened. It's one of the most undiagnosed diseases in the states. I literally had to ask for a Celiac blood test for both for Sunnie and myself. One of my moms doctors, who is one of UCLA's best, never even thought she could have Celiac disease until after her death when I mentioned it. The disease is genetic, meaning if your parents had it there is a strong possibility that you may have it. The main reason it isn't screened in the US is because the drug manufactures rule the medical establishment here. The fix for Celiac disease isn't a pill. It's a strict adherence to avoiding gluten. Can you imagine how much money the drug and food companies or even doctors would lose with this information given to the public? Good news is, once someone fixes their diet, the symptoms and disease starts to correct itself. Caught at an early age obviously has the best outcome. The intestines have the ability to repair themselves between 6 months to a couple years depending on how long the damage has happened with a strict adherence to this dietary change. In the U.S. most Celiac cases (which are rarely caught) are diagnosed between the ages of 40-60 years of age. The average time that it takes for someone to realize their Celiac disease is roughly 10 years.

Sad and happy:
We just had Sunnie tested and her test came back positive for Celiac. In some ways I was sad but mostly happy that we may have saved her life and given her the chance to live a normal childhood. As far as my mom, I wish I would have known more about this disease a few years ago. I may have saved her life. I still have dreams/nightmares that I'm back in time informing her on Celiac disease. IMO, I think every child should be screened for this as well as every American. The amount of money my mom racked up in her short bout was probably close to, if not over the million dollar mark. This could have been avoided to some degree with proper screening.

Anyway, I know this was long winded and there are probably a select few that will read the whole message but if it saves someone's life then it was time well spent.



Cheers, Billy.

[brad0022]

Totally right Billy. Thanks for the info. I to have pretty much the exact same symptoms minus the migraines but was tested negative a few years ago. I have read a lot about this disease. Everyone should get checked.

[Bowley Boy]

Think about getting retested as the tests have a good sized probability of false negatives. My first test was neg / neg.

Read this:
http://www.celiac.com/articles/13/1/What-i...ests/Page1.html

[IBD/IBS Author]

You also need to realize that even if you test negative for Celiac disease (which is an actual allergy to gluten/wheat) you may still have a gluten intolerance. I tested neg. for Celiac but since going gluten-free nearly 6 months ago I'm now off all IBD and IBS medications, my Endometriosis-like symptoms have improved immensely, and life in general is much better.

It's now estimated that 1 in 130 people have Celiac or a gluten-intolerance. It seems a logical thing for anyone with IBS or IBS-like symptoms to look into. Doctors are only just coming around to realizing how common this issue is.

[Bowley Boy]

My moms doctor was one of UCLA's best cancer surgeon/oncologists. He never once thought to ask my mom if she had been screened for Celiac. After she died I called him and told him and after it started to all make sense. He told me that he will now inform all the cancer doctors and physicians, that call him for advise, on Celiac awareness and screening for cancer patients.

My wife calls Keizer the other day to set up a Celiac Panel and the lady asked her: "What's Celiac?"

Called my mom's dentists and let him know the situation as most of my mom's extensive dental work was most likely due to her unchecked Celiac. He had never heard of Celiac Disease but was very thankful that I told him and will now look for red flags of Celiac in his patients.

The owner of the paper I work for read my Celiac post and asked me to do a package in the Sunday opinion section. This will reach 40-70,000 people.

Next year I will have a Celiac Awareness theme on my racecar. By the time the season is complete, every driver and fan and the tracks I visit will know what Celiac Disease is.

My biggest deal though is I have an in on a Kern County law maker and I will push for screening of kids. With the current numbers and stats, my county has roughly 1,500 kids walking into the schools with a disease they have no idea they have.

This disease is SO simple to fix and is completely swept under the rug by the drug companies who have billions to LOSE by proper screening and awareness.

Bang the drum, spread the word. Not knowing doesn't cut it.

Billy

[S_LIne]

Hmm good read I might give it a go for a few months I don't think I have it as I only have not normal bm's and gas I however sometimes feel bad after eating I'm going to try it don't have anything to lose.

[IBD/IBS Author]

S Line

Get tested for Celiac BEFORE you start eating gluten-free. If you don't get properly screened for Celiac before you start eating gluten-free then the Celiac testing won't be valid. Then, if you test negative for Celiac still go ahead and eat gluten-free for a couple months as you could be gluten-intolerant, like me.

[S_LIne]

Ok I will get tested for it I am assuming it's a fairly easy test to do?

[Kathleen M.]

They usually do a blood test first, but may want to follow up by doing a biopsy of the lining of the small intestine and so that requires an endoscopy. (camera down the throat)

[S_LIne]

Camera down the throat!? I hope they knock you out beforehand. I think I might try to find a doctor near me and have it done. Is it real expensive to have blood work done? Or does it vary?

[IBD/IBS Author]

They'll do a blood test first, it that comes back negative then they consider you to not have Celiac. If the blood test comes back positive, then they do an endoscopy to confirm the diagnosis - it allows them to see the small intestine, which is where the damage from Celiac shows up.

The blood work may be a couple hundred dollars, I believe, but if you have insurance it will most likely cover it.

Good luck,
E.

[Kathleen M.]

Yep, they typically give you something for the endoscopy, but that is only after you test positive on the blood test and that is like any other blood test.