Hi, I'm SBJ

sbj · Joined: 01 Oct 2008 Posts: 41 Location: Long Beach, CA

New to the board and not sure where best to introduce myself so I'll start here.

Screen name's sbj, 44 yr male, live in so cal.

My story: I was diagnosed with celiac disease for sure just two days ago. I hadn't had any symptoms at all that I am aware are associated with celiac disease. I felt fine. Due to a recent diagnosis for a completely different genetic condition, I now need an annual colonoscopy and endoscopy (as well as some other tests). My first endoscopy was on September 8, 2008. My gastroenterologist didn't see anything unusual but he, apparently, always takes a few biopsies just to be sure. The pathology lab saw something in my duodenum biopsy that looked to them like celiac disease ("intraepithelial lymphocytosis, increased lamina propria lymphoplasmacytic infiltrates, and villous blunting, consistent with celiac sprue"). My gastroenterologist drew some blood and two days ago he called to say that I have celiac disease and I need to start a gluten-free diet.

I was very surprised because I have no symptoms, but yesterday was my first gluten-free day and I guess I'll have to be doing this for the rest of my life. It seems as if there is plenty of support out there, plenty of GF products in the markets, quite a few restaurants with GF menus, etc. so, although I know this will be difficult, it doesn't look impossible.

I do have a few questions so I'll wait and see if anyone responds to this who might be able to help a newbie.
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Diagnosed with celiac disease October 1, 2008 based on duodenum biopsy and blood test

cruelshoes · Joined: 23 Sep 2005 Posts: 2542 Location: Washington State

sbj · Joined: 01 Oct 2008 Posts: 41 Location: Long Beach, CA

Thanks cruelshoes. I'll check the stickies as time permits (at work, you know). My questions:

Since I don't have any symptoms my gastro suggested I simply start the diet and said he did not think any other tests were necessary. I did a bit of hurry-up research and saw all kinds of warnings about low bone density, vitamin defficiencies, diabetes and arthritis, meds and injections, blood count, anemia, etc. My doc is nice and he said he would order tests if I really wanted them. So the question is, should I ask for anything in particular or just start the diet?

Also wondering about how careful I need to be in the kitchen. That is, do I really need to throw all my cookware out and start over? Or clean all my drawers and cupboards? I really don't want to clean out the oven! It seems like a lot of work but I'll do it if I have to. It's hard for me to justify because I don't have any symptoms.

Also, do you know of any place on this board where people with celiac without symptoms get together to chat?

Thanks for the reply!
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Diagnosed with celiac disease October 1, 2008 based on duodenum biopsy and blood test

aklap · Joined: 02 Oct 2004 Posts: 8602 Location: WI, USA

Hey SBJ - Running short on time, just wanted to say welcome! Great another guy!! Cool

[I'm a bit out numbered here...].

Make yourself at home. Don't be afraid to ask questions - we love questions Wink

The fridge over there is stocked with great GF beverages...
I think there might even be some GF pizza left, although I did see TEC over there before - it might be all gone. No worries, another one will be up soon Very Happy

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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

cruelshoes · Joined: 23 Sep 2005 Posts: 2542 Location: Washington State

sbj · Joined: 01 Oct 2008 Posts: 41 Location: Long Beach, CA

Wow, thanks for the info cruelshoes!

I will ask my internist for testing for vitamin and mineral deficiencies then. Question: Wouldn't these resolve themselves after being on the GF diet? If I was deficient, what would be the resolution? Take some vitamins or ... ? I'll also ask for the bone density test.

Wow! I am surprised to hear about how little gluten can be harmful. My doctor did not give me any idea about this. No word that I needed to replace cookware or worry about microscopic amounts. (Wouldn't the damage be worse if you took in large amounts of gluten versus microscopic amounts?) Unfortunately, there's absolutely no way that I can afford to replace all my bakeware, pots and pans, collanders, utensils, toasters, etc. Most everything is well-used or has grooves. Auugh! How do people on a budget afford this? I can't do this all at once. I guess I can only hope that it doesn't harm me in the meantime.

By the way, quick idea on the cross contamination with butter, jam, mayo, etc. Most of these are available in squeeze jars now, so unless misused they shouldn't get cross contaminated.

I will be very diligent on the follow-up bloodwork. I already have to get certain tests done on urine and blood twice a year so it won't be a problem.

Thanks again!
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Diagnosed with celiac disease October 1, 2008 based on duodenum biopsy and blood test

sbj · Joined: 01 Oct 2008 Posts: 41 Location: Long Beach, CA

Update for cruelshoes:

My doc has ordered a bone density test 'to get a baseline', additional 'labs', a CBC for an 'indication of vitamin deficiency, and even a referral to a nutritionist.

So thanks much for the advice!
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Diagnosed with celiac disease October 1, 2008 based on duodenum biopsy and blood test

cruelshoes · Joined: 23 Sep 2005 Posts: 2542 Location: Washington State

aklap · Joined: 02 Oct 2004 Posts: 8602 Location: WI, USA

I decided to split this off the Check-In Index thread.

There's some good stuff in here, and I didn't want it to get lost.

Carry on.... Smile

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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

cruelshoes · Joined: 23 Sep 2005 Posts: 2542 Location: Washington State

Thanks, Al. I wasn't sure how we were going to work that detail out. Very Happy

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-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

sbj · Joined: 01 Oct 2008 Posts: 41 Location: Long Beach, CA

Not sure I like all the attention! Just joking. You're a busy man, Al.

Thanks, Colleen, for the encouragement. I had forgotten about parchment paper so I can get by with a lot of the baking stuff I already have. And the 99 cent store is a good option for some of the cooking utensils. The pots and pans might take abit more time. I like to use good ones and they can be a bit pricey. But I'll simply replace one piece at a time and be really careful in the meantime.

I was a bit skeptical at first about the microscopic quantities of gluten being a bother, but now that I've read a bit more I can see that you are correct. Univ of Chicago says, "Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten." I think that not having any symptoms might be both a blessing and a curse. It might lead people to believe that a little bit is okay, after all, you're not suffering in any way.

I've got to go - power at work just went out and operating off the battery!
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Diagnosed with celiac disease October 1, 2008 based on duodenum biopsy and blood test

aklap · Joined: 02 Oct 2004 Posts: 8602 Location: WI, USA

Heheheeee

Silent Celiac is tougher to deal with in that respect. Followup blood work is important for any Celiac - but it's more so for you. You have no way of knowing if you're consuming any gluten. Be aware - gauging internal damage by external symptom is never a good idea. Damage can still be taking place, even though you don't feel it.

Our Thread on Univ of Chicago CD Center - Followup Testing - What & how often you should be tested after going GF.
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

nancw · Joined: 04 Oct 2006 Posts: 855 Location: Denver, CO

Hi sbj,

Welcome. I don't think I've ever before encountered an asymptomatic, incidentally-diagnosed person w/ Celiac.

Have you considered your family health history and recognized other possible cases of undiagnosed CD in your relatives, and/or patterns of related diseases?

I hope you hang out and tell your story as it develops. We'll help you out on the technical stuff. Wink

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Nance

gluten, dairy, soy, rice, yeast and 99% grain-free

zip2play · Joined: 24 Jan 2006 Posts: 234

Welcome sdj!

sbj · Joined: 01 Oct 2008 Posts: 41 Location: Long Beach, CA

Thanks for all the welcomes. I feel very at home.

I already received the results of my blood tests. We checked calcium, magnesium, electrolytes (sodium, potassium, chloride, CO2), and CBC (all sorts of stuff). Everything came out within standard ranges.

I wonder if I am the only asymptomatic, incidentally diagnosed member on this forum. Any others out there? I have been reading that more and more celiac sufferers are without symptoms and more are being diagnosed via endoscopy all the time. I feel quite lucky that they found this before I began to feel symptoms or cause long-term, dangerous damage.

I was bumping along, perfectly healthy (so I thought), symptom-free. My cousin discovered he had Lynch Syndrome. His dermatologist removed a skin carcinoma, asked some family history, and suspected this genetic predispostion towards various cancers. Since we had the same grandfather there was a good chance I also had Lynch. So I got the genetic test and bingo, me too. Then I was scheduled for an endoscopy (amongst other things) to look for signs of stomach cancer. No signs of cancer but the pathologist noted the tell-tale signs of celiac. It was then confirmed via blood antigen test.

Stopped in to Whole Foods today. Lots of products, horrible prices. Really crazy prices, IMO. Stopped by Trader Joes afterwards and saw some similar products for quite a bit less. I imagine that my Ralphs will also have similar products. I am guessing that ordering foods online might prove to be the cheapest? Maybe I'm just lucky here in SoCal but there's gobs of products on the shelves. After only a few GF days I am already missing baked goods. I imagine that's where Whole Foods would be handiest. But it's hard to shell out two bucks for two cookies. And a lot of the stuff seems to be sugar-free, dairy-free, soy-free, etc. I like sugar and dairy!

Anywho, this is pretty crazy but thanks for the support!
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Diagnosed with celiac disease October 1, 2008 based on duodenum biopsy and blood test