Questionable celiac

[Pixiegoddess]

Hello!  I've had GI issues most of my life, was diagnosed with IBS at 19 and again at 59.  Biopsy done at 59 was questionable for celiac, but blood tests negative.  I was dismissed by doc and told I have IBS.  Recently I have been on a mostly gluten free diet - not super strict, but stay away from obvious sources.  Was diagnosed with iron deficiency anemia.  EGD showed scalloped folds and crypt hyperplasia, but biopsy negative for blunting.  I did not do a gluten challenge like I should have, which I now regret.  Thoughts on where to go from here, or should I just stick with gluten-free diet?

[cyclinglady]

1 hour ago, Pixiegoddess said:

Hello!  I've had GI issues most of my life, was diagnosed with IBS at 19 and again at 59.  Biopsy done at 59 was questionable for celiac, but blood tests negative.  I was dismissed by doc and told I have IBS.  Recently I have been on a mostly gluten free diet - not super strict, but stay away from obvious sources.  Was diagnosed with iron deficiency anemia.  EGD showed scalloped folds and crypt hyperplasia, but biopsy negative for blunting.  I did not do a gluten challenge like I should have, which I now regret.  Thoughts on where to go from here, or should I just stick with gluten-free diet?

At 59, you might as well just stick to the gluten free diet, but be strict!  Some celiacs are seronegative, but it sounds like you were gluten light when you had the blood test and endoscopy.  Do you know if more than four biopsies were taken?  It can be easy to miss patchy damaged areas.   In a few months, see if your anemia has resolved.  My ferritin levels dramatically increased in just a few months.  This can help determine if you are on the right course of action.  

If you do not think you can adhere to the diet, consider a gluten challenge.  Often, seeing a test result can be helpfu.  Lab tests do not lie.  

[Pixiegoddess]

Thank you cyclinglady.  I misspoke in my original post.  I was 49 when I had the questionable biopsy but negative blood tests.  I am now 61 and recently had an EGD without a gluten challenge.  This most recent EGD was where the scalloping folds and crypt hyperplasia came from.  The biopsy was negative - I'm not sure how many biopsies were taken.  I could check on that.  It was recommended I do the gluten challenge to have the blood tests done, to see if that would make a difference in the results.  Just not sure I want to continue, due to how it's making me feel.  But a more definitive answer would be nice to have.  I do have other symptoms that are not GI related as well.  

[cyclinglady]

If you really are trying to pursue a diagnosis. I would try to get those old records.  Intestinal damage can be spotty.      This is one reason celiac experts recommend a minimum of four biopsies (more is better).  Not all GI’s have the newer scopes that can actually see villi.  Then look at your blood tests and determine exactly which celiac tests were taken.  The common screening TTG test is the most often used, but it does not catch all celiacs (like me).  If my GI had not ordered the complete panel, my diagnosis would not have been caught.  My main symptom was anemia and when I went through menopause, I guess they finally figured out that they could not blame menstruation!  I had no GI symptoms to speak of.  Of course, I can not blame my doctors.  Who would have thought you could have two anemias.....well you can, but in their defense I was considered pretty healthy.  

My cousin is like you. Had some of the tests years back and doctors found nothing wrong.  She went gluten free because of me.  It worked.  My hubby went gluten-free 17 years ago (12 years before my diagnosis) per the poor advice of his G and my allergist.  The thing  is both recovered.  Both refuse to do a gluten challenge.  There are risks to doing a challenge (why you should never start one without being under a doctor’s care) and only YOU can determine if it is worth it.  

Read the University of Chicago’s website,  Mayo Clinic or any of the top celiac centers and learn more about celiac disease before making a decision.  Be informed.  

Here is a video that I love!  It explains things pretty well by Dr. Fasano one of the world’s leading celiac disease researchers.  

Open Original Shared Link

 

[Pixiegoddess]

Thank you again for your response and good info.  I will definitely delve deeper, and check on my old records.  

[Wheatwacked]

Your defacto diagnosis is self evident. Wheat is bad for you. More celiac tests will only prove what you already know. The only treatment is don't eat wheat.  It is not your fault. As you get wheat free you will discover other health issues that were hidden and probably caused by wheat as a secondary. Treat them as they come up. You may be low in vitamin D, and Iodine. Most Americans are anyway but especially with malabsorption issues as you have had. I  took 10,000iu vitamin D for a year and it had an incredible effect my chronic depression.  One sheet of sushi seaweed everyday for Iodine( midrange of recommended), and it kickstarted a wound I had that wouldn't heal and improved my muscle tone. 

After three years wheat free I am amazed to find I sleep through the night. No sleep apnea, no prostate, no reflux. No mouth breathing, no alcoholism, better nightvision, do not need to clean protein from my contacts, cataracts improving left eye was declared clear last month. That is only the beginning of my personal symptom list.