Help with information! Positive biopsy Celiac

[Matt13]

Hi Guys,
I am new here and i just wanted to say hello to everybody and to say thanks to all admins and people who are sharing info so they can help each-other! Today i need help for peace and mind
I am male 39y old  and Recently, couple months ago 6-8 i started to have more and more symptoms and problems for example like: constant bloating, constant discomfort, fatigue, weight loss and abdominal pain. I have hemmies and occasional blood in stool. I do not have D, sometimes i have C but normal stool.
I went to my GI and he did upper and lower endoscopy with biopsy. Pathologists found increased IEL and moderate villious blunting Marsh 3a/b. My serology was negative for complete celiac panel.
I did not do yet the gene testing. I was positive for SIBO (methane)and now i am on antibiotics. My other examinations are ok, (ultrasound, blood cbc, h.pylori stool, and so on).
My questions are:

1. Does anybody here have positive biopsy and negative celiac panel even gene testing?

2. Does andbody have increased IEl and villious blunting with SIBO?

Thank You and kind regards!
 

[plumbago]

23 minutes ago, Matt13 said:

2. Does andbody have increased IEl and villious blunting with SIBO?

I had this, minus the SIBO - that I know of. It's possible that my gastros at the time either didn't know much or think much about SIBO, I just don't know. How are your liver enzymes? Did the doctor palpate your abdomen? Can you get the complete report? If you are in the US, you are entitled to see exactly what the doctor wrote, with a new law passed in 2020 or 2021.

[Matt13]

Hi Plumbago,
 

thanks for the reply! Yes i did do liver enzymes and they are ok! I am in EU.
Sorry i did not understend, so i had only postivve biopsy and negative celiac blood panel?
Thanks Kind regards, 

[Matt13]

1 minute ago, Matt13 said:

Hi Plumbago,
 

thanks for the reply! Yes i did do liver enzymes and they are ok! I am in EU.
Sorry i did not understend, so i had only postivve biopsy and negative celiac blood panel?
Thanks Kind regards, 

Sorry, typo.... U had postive biopsy and normal celiac panel?

[plumbago]

3 minutes ago, Matt13 said:

Sorry, typo.... U had postive biopsy and normal celiac panel?

I meant to reply about that - I had both positive serology (celiac panel) and positive biopsy, so my situation is not exactly like yours. Were you eating sufficient gluten at least 2 weeks before the celiac panel test?

There are other situations that can lead to degraded villi and IEL. Are you taking any medications - or, were you, prior to the EGD?

[Matt13]

Yes i did. And that is why i asked this questions...is there anybody with this biopsy for celiac without blood panel...so if you know anybody please tell. Kind regards

[trents]

"My serology was negative for complete celiac panel"

 

Can you elaborate on that, Matt13. It is unusual in the UK to have any celiac antibody tests run other than the tTG-IGA.

And some clarification, please. Did you have gene testing done for celiac disease potential and what were the results?

[Matt13]

Hi Trent!
Thanks for the reply! Ok so biopsy is positive... Marsh 3, and blood panel ttg-iga, and ema was negatiive.
I have read on this forum there are numerous  people with negative blood test and positiv biopsy, bu they are older posts and i wanted to see if there is anybody with positive biopsy for celiac and SIBO or positive biopsy and negtive blood test but they have official diagnosis od Celiac.
Sorry if i was not clear. kind regards

[trents]

tTG-IGA and EMA does not constitute a "full celiac panel" by any means. There are also DGP-IGA and IGG-based tests that can be run to detect celiac disease and total serum IGA should also be run as low total serum IGA can bias other IGA test toward the negative range. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

[Wheatwacked]

Marsh 3 villi damage has been the Gold Standard for positively diagnosing Celiac Disease.  

     Merck Manual     "Celiac disease is a hereditary intolerance to gluten (a protein found in wheat, barley, and rye) that causes characteristic changes in the lining of the small intestine, resulting in malabsorption."

SIBO is an overgrowth of carbohydrate loving gut bacteria. 

Go for gluten free unprocessed foods during recovery. Like lots of garden salads and proteins like salmon, mahi, eggs, beef, turkey.

Low vitamin D and low B vitamins, low Choline and lowTaurine make you sick.

Edited June 19, 2023 by Wheatwacked

[RMJ]

As trents said, you did NOT have a full celiac panel.

A full panel would include:

Total IgA (if deficient, the other IgA-based tests might not be accurate).

TTG-IgA

TTG-IgG

EMA

DGP-IgA (Deamidated Gliadin Peptides)

DGP-IgG

Not everyone with celiac disease is positive on all tests.

[Matt13]

Ok, thanks for the reply! But how many of You had negative blood serology and positive biopsy?

[trents]

Matt13, what we're saying is we really question whether or not you actually have negative blood serology. If a true complete celiac antibody panel were run you might find that to be the case. Some of the serology tests that were not run might turn up a positive. And I would comment on plumbago's post above. Two weeks of eating regular amounts of gluten likely would not be enough to produce positive serology tests, though it is considered sufficient for a biopsy. For those who started the gluten free diet before testing, the Mayo Clinic recommends eating two slices of wheat bread (or the gluten equivalent) daily for 6-8 weeks leading up to the day of the blood draw.

At any rate, it is also true that a percentage of people experience villi blunting from the dairy protein casein, the oat protein avenin, some meds like NSAIDs and a certain blood pressure med, and from some non celiac intestinal diseases such as Crohn's and some tropical parasites. So, I take it you are questioning whether or not you actually have celiac disease.

Edited June 20, 2023 by trents

[Matt13]

Hi Trents, yes that is what i was asking, thank You for the reply. You explained it all well and now i know what to ask my GP. Kind regards,

[trents]

Yes, it is normal to not test positive on all the tests run in full celiac serology panel. Kudos to your GI doc for thinking to test you for SIBO which a concurrent malady common in the celiac community. Otherwise, a gluten free diet may not result in feeling much better.