Now What?

[LoisT]

Shock of my life when I was diagnosed with Celiac last year. WHA? I was 66 years old, and never had had a single symptom of the disease. “Possible Celiac” showed in a complete metabolic blood panel I’d had, which was done for something else entirely, then the endoscopy and, voila, Silent Celiac. Okay, I read up on things, I’ll play along, but HOW will I ever know how I’m doing? Will I need annual endoscopies, what? 

[plumbago]

45 minutes ago, LoisT said:

Shock of my life when I was diagnosed with Celiac last year. WHA? I was 66 years old, and never had had a single symptom of the disease. “Possible Celiac” showed in a complete metabolic blood panel I’d had, which was done for something else entirely, then the endoscopy and, voila, Silent Celiac. Okay, I read up on things, I’ll play along, but HOW will I ever know how I’m doing? Will I need annual endoscopies, what? 

Annual? No! But you ask a good question.

You can do regular antibody tests to gauge if you've "been glutened," which can over time damage the lining of the small intestine, as I'm sure you know by now. I repeated an endoscopy last year (my second one in 10 years just so you know). I did have symptoms on diagnosis and biopsy so I was able to tell that I had improved.

Without symptoms, we are all curious to know what led the provider to do a celiac panel. Were you deficient in some vitamins? What on a CMP leads a provider to think "possible Celiac?" Please do share!

Plumbago

[GFinDC]

Hi Lois,

It may be difficult to know when you ingesting gluten with no symptoms.  The best you can do is do your best.  Very helpful, I know.  It's generally safer to eat to eat whole, unprocessed foods.  Foods such as meats, veggies, eggs, nuts and fruit.  If it comes in a box or has more than 3 ingredients it's more likely to be a problem.   Think simple foods and home cooked meals.

There are digestive enzymes that can help with minor gluten contamination.  But the minor is just that. minor.  So a little cross contamination for instance might be helped by them.  A major glutening will not be helped though.

DPP-4 is one enzyme that helps.  You can get blood antibodies tests on a semi-annual basis to verify your antibodies are staying low.  And vitamin and mineral levels tests too.  Celiac disease symptoms are not fun, but they do let us know when we have slipped up.  There is an FDA rule on labeling foods as gluten free now.  So you can have some assurance that those foods are fairly safe.  Foods that are naturally gluten-free don't have to be labeled.  Foods like oranges for instance. 

[trents]

1 hour ago, LoisT said:

Shock of my life when I was diagnosed with Celiac last year. WHA? I was 66 years old, and never had had a single symptom of the disease. “Possible Celiac” showed in a complete metabolic blood panel I’d had, which was done for something else entirely, then the endoscopy and, voila, Silent Celiac. Okay, I read up on things, I’ll play along, but HOW will I ever know how I’m doing? Will I need annual endoscopies, what? 

Welcome to the forum, LoisT!

Are you now eating gluten free? You don't say but I would assume so since you are "playing along."

Unfortunately, if you are even approximating eating gluten free then serum antibody testing will likely not be helpful and at best equivocal. That is the only other testing for celiac disease besides the endoscopy biopsy. I think you should be retested with endoscopy/biopsy within a year of beginning your effort to eat gluten-free to see if there has been healing of the blunted villi. It can take two years or more for complete healing to take place but you should see progress in less time than that if you are being consistent with gluten-free eating.

But that is the crux of the matter. I think it is much easier for silent celiacs to fudge on their gluten-free eating because they feel no pain. And it is also more difficult to know what things to avoid by experience. There is quite an education curve when you are a newly diagnosed celiac.

I would certainly advice avoiding eating out and avoiding as many processed food items as possible. Eat simple. Fresh fruits and vegies, fresh meat. Avoid sauces, coatings and complex seasonings. Stick to salt and pepper if you cannot confirm a seasoning is gluten-free. Become a food detective and a label reader. Learn how gluten is hidden in processed foods through terminology and how it shows up in things you would never expect to find wheat, barely or rye in. Like soy sauce and some chocolate syrups. Nearly all canned soups. Just to name a few. Work with family and friends to plan safe menus when you are going to eat over at someone else's house.

And I would plan a second follow-up endoscopy/biopsy about three years out after going gluten-free.

Edited May 21, 2021 by trents

[LoisT]

Thank you, a good lead! I vaguely remember reading that a blood test for Celiac after diagnosis wouldn't tell much. I’ll pursue this. My year “anniversary” of diagnosis is in September and I’ll get active about this then.

Maybe my tip-off test was a BMP, Basic Metabolic Panel? Celiac was one of the things screened on it though and I got a very poor grade. My sister got checked, because she should, and she was totally okay, which is good, but I could use a silent friend.

[LoisT]

19 minutes ago, plumbago said:

Annual? No! But you ask a good question.

You can do regular antibody tests to gauge if you've "been glutened," which can over time damage the lining of the small intestine, as I'm sure you know by now. I repeated an endoscopy last year (my second one in 10 years just so you know). I did have symptoms on diagnosis and biopsy so I was able to tell that I had improved.

Without symptoms, we are all curious to know what led the provider to do a celiac panel. Were you deficient in some vitamins? What on a CMP leads a provider to think "possible Celiac?" Please do share!

Plumbago

Regular antibody tests, sign me up!

[LoisT]

10 minutes ago, trents said:

Welcome to the forum, LoisT!

Are you now eating gluten free? You don't say but I would assume so since you are "playing along."

Unfortunately, if you are even approximating eating gluten free then serum antibody testing will likely not be helpful and at best equivocal. That is the only other testing for celiac disease besides the endoscopy biopsy. I think you should be retested with endoscopy/biopsy within a year of beginning your effort to eat gluten-free to see if there has been healing of the blunted villi. It can take two years or more for complete healing to take place but you should see progress in less time than that if you are being consistent with gluten-free eating.

But that is the crux of the matter. I think it is much easier for silent celiacs to fudge on their gluten-free eating because they feel no pain. And it is also more difficult to know what things to avoid by experience. There is quite an education curve when you are a newly diagnosed celiac.

I would certainly advice avoiding eating out and avoiding as many processed food items as possible. Eat simple. Fresh fruits and vegies, fresh meat. Avoid sauces, coatings and complex seasonings. Stick to salt and pepper if you cannot confirm a seasoning is gluten-free. Become a food detective and a label reader. Learn how gluten is hidden in processed foods through terminology and how it shows up in things you would never expect to find wheat, barely or rye in. Like soy sauce and some chocolate syrups. Nearly all canned soups. Just to name a few. Work with family and friends to plan safe menus when you are going to eat over at someone else's house.

And I would plan a second follow-up endoscopy/biopsy about three years out after going gluten-free.

Maybe three years until another scope, yikes! But I understand, and trust my endoscopist and insurance will comply. I’m doing my very best to stay gluten free and although I am extremely grateful I have no obvious reactions to gluten, an inner sensor would be handy. 

Be careful what you wish for I say to myself.

[trents]

I was meaning a scope at the end of year one after going gluten free and then another two years later. Talk to the GI doc about doing the upper GI at the same time you go in  for a routine colonoscopy. You may get a two for one discount. But make sure he cleans the scope well if he does the lower end first.

If you want to pursue the serum antibody test it would require you to go back on eating gluten daily (the equivalent of two slices of wheat bread) for 6-8 weeks leading up to the blood draw. One episode of "glutening" ain't going to do it.

Edited May 21, 2021 by trents

[LoisT]

Upper GI? I gotta look that one up, but thanks.

[trents]

Upper GI is also commonly called an endoscopy. But technically speaking, "endoscopy" can mean a scoping from either end. With an upper GI, the esophagus, stomach and small intestine are scoped when the tube is inserted via the mouth. This is what is used to diagnose for celiac disease. Celiac disease damages the villi that line the small bowel and the upper GI (endoscopy with biopsy of the intestinal lining) is what is used to detect this. The biopsy provides tissue samples of the lining of the small bowel that are then microscopically examined by a lab for damage. If the damage is significant enough, the experienced GI doc can often spot it during the scoping. A colonoscopy (aka, lower GI) is not the tool for diagnosing celiac disease as it only examines the colon and large bowel.

[LoisT]

The endoscopy is what discovered my damaged Celia. Maybe I should ask for slide to post on my wall to remind me this whole thing is real. Yuck!