Waiting for the next step after blood work

[Divergent]

Hi!

After more than a decade of feeling off  — bouts of acid reflux, intense digestive pains and gas, diarrhea/constipation, fatigue and brain fog... I think we should go ahead and add anxiety to that — my yearly song and dance at the GP's office got me a referral to a gastroenterologist, who said we should try and look for celiac and IBDs as a potential explanation.

I then did blood work for a couple celiac markers and I received these results:

Tissue Transglutaminase Ab IgA:       POSITIVE 15.5 (reference: < 12.0 U/mL)
Deamidated Gliadin peptide Ab IgG:   POSITIVE 36.0 (reference: < 12.0 U/mL)

Additionally, my vitamin D came back low (despite a long summer and taking a D vitamin on and off since January). I've been taking B12 supplements since I tested low many years ago. Iron has always been fine. I am not IgA deficient.

So, I don't want to get ahead of myself, but at this point I would be more disappointed to *not* have a diagnosis than to receive one.

I have a few things on my mind, if you're reading this and have any thoughts to offer, it's appreciated.

• My follow-up is more than a month from now, and I'm here staying up all night reading scholarly articles on deamidated gliadin peptides and failed hep b vaccines. Any tips for how I can take a step back and relax? (OK, if I'm being honest, I'm hoping this post will help me exhale.)
• I've read that I shouldn't cut out gluten given that endoscopies are usually the next step. I certainly eat gluten, but I'm wondering if I should eat more. Most days I will have some kind of pasta, bread or cereal, but there are easily a couple days a week where I don't consume much of it. Think: coffee for breakfast, eggs and bacon lunch, rice and veggie dish for dinner.
• The GE also asked me to do a fecal calprotectin test to investigate IBDs. After the celiac blood work came back positive, I held off, thinking it would be redundant (and a second out-of-pocket test to pay for) until the celiac results are dealt with. Is that logical?

[ravenwoodglass]

Welcome to the board.

You are correct that you need to keep eating gluten until all Celiac related testing is finished. You should try for at least a couple slices of bread each day. Use the time until your appointment to read as much here as you can and ask any questions you need to ask. Be sure to read the Newbie thread at the top of the Coping section for a lot of good info. Being gluten free involves much more than just food so being as informed as possible is vital to healing quickly.

I would also wait on the fecal test but that is just my opinion. You have had positive blood tests so there is no doubt you have Celiac. Once you have your 'official' diagnosis and have taken some time to heal if you are still having issues you can explore whether you have something else going on also. Being gluten free will not interfere with testing for anything other than Celiac.

[GFinDC]

Hi Divergent,

I suggest holding off on the other testing also.  You'll probably need an endoscopy to finalize the celiac disease diagnosis.  Hopefully other health issues you have now will disappear once you are diagnosed and go gluten-free.  Disappear as in slowly fade away.  Healing from celiac disease damage can take months to years.

I was kinda stressed out when I first went gluten-free.  But after a while it gets to be a routine and not a big deal.  You just have to learn what to watch out for.  You've learned other things in life, so you can learn this too.  It's not hard once you get used to it.

Some people like to eat a lot of their favorite gluteny things while waiting for the endoscopy.  Kind of a last hurrah.  Others don't want to eat any more gluten than necessary.  A slice of bread (pizza, donut) should do the trick.

As far as reading articles and researching, go right ahead.  Understanding the condition is important to living well with it.  Plus you may be able to help other people later.  Celiac disease is kind of an unusual condition.  While some conditions progress inexoerably towards decline, celiac disease's effects can be reversed by diet.  To a good extent anyway.   Some people go decades without diagnosis and the damage builds up and can cause other autoimmune diseases to take hold.  But there;s no reason for that to happen if you are gluten-free.

Eating gluten-free can lead people to learn more about the foods they eat.  If you switch to a whole foods diet you can avoid many of the preservatives, food colorings, emulsifiers, and other chemicals that most people eat without thinking about it.  That change may lead to better health also.

Recovery from celiac disease damage can take quote a while.  So don't expect things to instantly get better and stay that way.  It can take months to years to feel right again.  None the less, many people feel significantly better in a few weeks of starting the gluten-free diet.

Welcome Divergent, we are glad you are here!

[Divergent]

Thank you ravenwoodglass & GFinDC for the thoughtful replies .

I'll be reading more around the forums and stocking my fridge with enough beer for the next few weeks.

[squirmingitch]

I agree with Raven & GFinDC, great advice they gave you. This research will also give you time to run across the celiac/gluten internet myths of which there are quite a few. Things such as gluten in envelope glue -- UNTRUE. There are some really crazy ones out there and when newbies run across them, they really don't know NOT to believe those things and they end up in a tizzy & panicking, freaking out & so forth. If you want to know about anything, just ask us here.

I want to point you to 2 sites that are really worthwhile and informative. Both are by the same person but one is completely free and the second is a small fee (under $5) per month. This gal is amazing at what she does, highly intelligent, well educated, is a celiac herself and stands up for the gluten free community. Here are the 2 links:

Open Original Shared Link

Open Original Shared Link

[Divergent]

I thought I'd take a moment to provide an update, given how much lurking I've done on these forums the last year.

It took a long time, but I've since had another gastroenterologist visit, many months of eating tons of bread, and an endoscopy where they took several biopsies. I have to say, the endoscopy was a super quick and efficient experience. During the procedure they let me know that it looked somewhat suspicious, causing them to take many biopsies, and then did comprehensive blood work.

About a month later, I received a call telling me that the TTG came back positive a second time, and that the biopsies were a mix of negative (normal) results and some that were positive (showing blunting of the villi). As a result, I've been given a celiac diagnosis.

It's been about a month now that I've been eating gluten free. Not sure if I'm really feeling all that different yet. It's a bit twisted to say, but in some way I was hoping for this diagnosis — thinking how nice it would be to have an explanation, a plan of action, and feeling better. It's certainly no small change to be totally gluten free, but I'm hopeful.

[cyclinglady]

Thanks for the update and welcome to the club you never wanted to join!  ?