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Requesting Advice Please!

Devon2

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Devon2 Newbie
Devon2
Posted

Hello,

I was first tested for Celiac in 2010 and the results were inconclusive. My presenting symptom was gnawing abdominal pain, nausea, and vomiting. My work up was extensive and included abdominal ultrasound (negative), gastric emptying study (borderline delayed), bloodwork and endoscopy. I will post my blood panel and biopsy results below. Basically my blood work was negative but my biopsy was a possible positive. My GI doc thought it could be early stages of Celiac or could be indicative of future Celiac. I have not been gluten free, but my symptoms have persisted over the years. I made an appointment for a Celiac specialist to retest. Any input or advice would be greatly appreciated. Thanks in advance!

Endoscopy: "fairly large amount of bile retained in stomach, mild diffuse erythema and decrease in the vascular markings"

"Mild atrophy of the fold to the second duodenum"

Endomysial IGA antibody - negative

Gliadin IGA. Antibody - < 3 (<11)

Gliadin IGG antibody - < 3 (<11)

TTG - < 3 (<5)

Small bowel biopsy

"Duodenal mucosa with preserved villi and increased intra epithelial lymphocytes"

"Note: celiac disease 3 antibody demonstrates intraepithelial T lymphocytes suggesting celiac Sprue, Marsh Stage I. Serologic correlation is warranted"

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nvsmom Community Regular
nvsmom
Posted

Welcome to the board.  :)

 

...Basically my blood work was negative but my biopsy was a possible positive. My GI doc thought it could be early stages of Celiac or could be indicative of future Celiac. I have not been gluten free, but my symptoms have persisted over the years. I made an appointment for a Celiac specialist to retest. Any input or advice would be greatly appreciated. Thanks in advance!

 

It sounds like you were tentatively diagnosed with (early) celiac disease by your doctor.  He didn't recommend the gluten-free diet?  Did he have any other ideas what it could be?  When your retesting is done, if it remains inconclusive, you may want to try the gluten-free diet for a few (3-6) months and see if anything improves.  There is a chance that the tests gave you false negatives (they do that on occasion) or you have non-celiac gluten sensitivity (NCGS) which has the same symptoms as celiac disease but no reliable testing for it except a positive response to the gluten-free diet.

 

When you do get retested.  Make sure you are eating gluten in the weeks (usually 8-12) prior to the tests. One to two slices of bread per day, or the equivalent will do it.  Request as many tests be done as possible.  Celiac tests can miss up to 25% of celiacs so you best bet is to get as many done as you can.  These are the tests:

tTG IgA and tTG IgG

  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA - a control test
  • AGA IgA and AGA IgG - less reliable older tests
  • endoscopic biopsy - make sure at least 6 samples are taken

Good luck with the GI.  Let us know how it goes.  :)

SMRI Collaborator
SMRI
Posted

Those are your results from 2010, correct?  I think it's good you are getting retested but the Marsh 1 findings for your biopsy is a pretty strong indicator of Celiacs.  Hopefully your appointment is soon.

Devon2 Newbie
Devon2
Posted
  • Author

Those are your results from 2010, correct?  I think it's good you are getting retested but the Marsh 1 findings for your biopsy is a pretty strong indicator of Celiacs.  Hopefully your appointment is soon.

Yes testing was in the fall of 2010. I have an appointment with a celiac specialized GI in January (earliest appointment). I had tried a gluten-free diet for about one month at the time of potential diagnosis but it is so hard and my results were inconclusive so I quit. At this point I should continue eating gluten until January in order to get the most indicative results on testing correct?

cyclinglady Grand Master
cyclinglady
Posted

Yes, keep eating gluten until all testing is complete (that means until your January appointment). You can do it!

Take care!

Devon2 Newbie
Devon2
Posted
  • Author

Yes, keep eating gluten until all testing is complete (that means until your January appointment). You can do it!

Take care!

Oh it won't be hard for me to keep eating gluten! I'm a gluten fiend hahah. That's why I waited so long to be retested, I'm praying I come back negative. If I come back positive it will be heartbreaking but I'll do it because my health is important. I think I just adjusted to feeling poorly more often than not, but it would be nice to know definitively whether or not I need to be concerned with consuming gluten.

Has anyone heard of someone's biopsy coming back as Marsh Stage I with negative blood work? Anyone know someone who had Marsh Stage I due to something other than Celiac?

nikkijayne28 Newbie
nikkijayne28
Posted

Endoscopy: "fairly large amount of bile retained in stomach, mild diffuse erythema and decrease in the vascular markings"

 

 

This is interesting; I'm yet to be tested (going to the doctor on Wed), but when I had my endoscopy before I was diagnosed with acid reflux, they also mentioned how much bile was in my stomach. I have no idea what it means though haha, just thought it was an interesting coincidence!

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kareng Grand Master
kareng
Posted

Oh it won't be hard for me to keep eating gluten! I'm a gluten fiend hahah. That's why I waited so long to be retested, I'm praying I come back negative. If I come back positive it will be heartbreaking but I'll do it because my health is important. I think I just adjusted to feeling poorly more often than not, but it would be nice to know definitively whether or not I need to be concerned with consuming gluten.

Has anyone heard of someone's biopsy coming back as Marsh Stage I with negative blood work? Anyone know someone who had Marsh Stage I due to something other than Celiac?

This site might be helpful.

Open Original Shared Link

1desperateladysaved Proficient
1desperateladysaved
Posted

Open Original Shared Link

 

This posts ideas of what else Marsh phase 1 could be.  Did they check through the list.  To summarize what remember from the list:

Parasites, (I will come back)

Devon2 Newbie
Devon2
Posted
  • Author

Open Original Shared Link

 

This posts ideas of what else Marsh phase 1 could be.  Did they check through the list.  To summarize what remember from the list:

Parasites, (I will come back)

That lists states: "This finding is not specific to celiac disease, however. Increased epithelial lymphocytes can also occur in other conditions, including inflammatory bowel disease, Sjogren’s syndrome, Helicobacter pylori gastritis, use of nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin and ibuprofen, and other food intolerances."

Definitely don't have any of the IBD disorders (colitis, crohns) as I never have a problem with D and I'm assuming they would have found some ulcerations. H. Pylori was negative by biopsy during the same endoscopy. I don't regularly use NSAIDs and try to stay away from any medications in general. Lastly, I really don't have any symptoms similar to those listed for Sjogrens.

I guess I'll just have to wait and see what retesting reveals! Crossing my fingers for all negatives!!

nvsmom Community Regular
nvsmom
Posted

Has anyone heard of someone's biopsy coming back as Marsh Stage I with negative blood work? Anyone know someone who had Marsh Stage I due to something other than Celiac?

 

We have people around here who had Marsh stage III and still had negative blood tests.  We also have some with no damage found that had very high blood test results.  Damage, or lack thereof, to the intestines does not always, or even usually, correlate to the blood test results. 

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