Nailing Down The Diagnosis

[Wheatie NOT]

Hello,

 

I am new to the forum.  I am in the process of getting diagnosed.  Tenative diagnosis is celiac.  I had symptoms and had an endoscopy and colonoscopy.  I had microvilli atrophy (pathcy) with lymphocyte accumilation and evidence of maladsorption.  Negative for the antibody test, but had been on a gluten free diet for a month prior per doc's instructions.  Genetic test was postive for the correct genotype for possible celiac development.

 

I was advised to have the capsule test as an additional measure to confirm the diagnosis. Some question as to whether I have some type of bacterial overgrowth and to rule out and obstruction, though I already had both the endoscopy and the colonoscopy with biopsies and nothing else was noted. I was just wondering if anyone else has had to go through this? Is this  the standard workup?  If so, how was it?  Did you feel it helped nail it down?

 

I have another medical condition so I try to avoid any radiation if possible. 

 

Also, if anyone can direct me as to any good resources to read about celiac it would be most helpful!  Trying to learn to cook, eat, and cope has me a little off-kilter right now!

 

Thanks so much!

[GF Lover]

Hi Wheatie, and welcome to the forum.

 

A Capsule Endoscopy does not use radiation so that is not a concern.  It uses a radio transmitter to deliver pictures to a receiver.  You may be confusing it with a Virtual Endoscopy which is like a CT scan.  If I'm wrong about this I will surely be corrected

 

Your Doctor is probably trying to rule out other causes.

 

I must also state that Celiac.com is one of the best resources you will find on the Internet.

 

Colleen

[GFinDC]

Welcome to the forum Wheatie!

 

Your doctor messed up by having you start the gluten-free diet before the blood antibody tests were done.  The right way to  do it is to do the antibody tests first, then do the endoscopy.  Eating gluten-free can be very simple if you stick to whole foods.  Processed foods can be tricky for a beginner.  Basically avoid anything in boxes or pre-made frozen meals and such.  Instead eat whole foods like chicken, veggies, nuts, eggs etc.  It may be a little boring compared to what you are used to but whole foods grow on you after a while.  And they make it much easier to avoid cc (cross-contamination).  After a few months you can slowly add different foods into your diet.

 

Some starting the gluten-free diet tips for the first 6 months:

 

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Watch out for cross contamination.

 

Helpful threads:

 

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

 

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[IrishHeart]

ooh, I hear that Newbie 101 thread is pretty good.

 

Hi WheatieNOT

 

I also highly recommend the book

 

Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

 

Over 50 celiac specialists' articles collected in that book and they cover every topic you  could possibly think of in understanding the disease, how to deal, what to eat, and what follow up care to request., etc, etc.

 

In addition to information on here, I find The University of Chicago Celiac Center to be extremely helpful.

 

Open Original Shared Link

 

Welcome to the forum. Let us know if we can help further.

Best wishes to you!

[Wheatie NOT]

Thank you very much everyone for the good tips and thoughts.  I especially appreciate the weblinks and book suggestions.

 

I have been going out to eat at places that advertise gluten free menus but am not sure I should trust this.  So far, I have not experienced any reactions that I can think of.  However, I had the biopsy results without a ton of symptoms.  I was actually surprised that I had gi damage.  I suspect I am one of those people who have "silent" disease.