First is was, then it isn’t… which is it?

[Fyremaker]

First is was, then it isn’t… which is it?

Stomach problems have led me from my PCP to a GI Specialist.  Barium swallow found duodenal ulcer and swelling. Upper GI Endoscopy was done. I was not doing any gluten free foods before the blood work.

Endoscopy reveals: “you may have celiac disease based on biopsies of the small bowel.  We have inflammation in the stomach consistent with gastritis and you will need to continue current medications.

A.  NEAR TOTAL VILLOUS BLUNTING WITH INCREASED INTRAEPITHELIAL LYMPHOCYTES, CONSISTENT WITH CELIAC DISEASE.
B.  ANTRAL MUCOSA WITH MILD TO MODERATE CHRONIC ACTIVE GASTRITIS.”

Blood work was then ordered (about 4 days after endoscopy).  The results are: “negative for celiac disease”

IMMUNOGLOBULIN A
Test     Flag     Result     Units     Range     Status
IGA     H         577      MG/DL 70-420

ENDOMYSIAL AB, IGA BY IFA
Test                              Flag     Result         Units     Range     Status
ENDOMYS IGA IFA     N     None Detected                            NDET

TISSUE TRANSGLUTAMINASE AB IGA
Test                           Flag     Result     Units     Range     Status
TISSTRANSGLIGA     N     8.8     U/mL     <15.0
Negative             < 15.0
Positive             Equal to or > 15.0

ANTI GLIADIN AB IGA AND IGG
Test                         Flag     Result     Units     Range     Status
ANTIGLIAD IGA     N     6.0     U/mL     <15.0
This test was performed using a deamidated gliadin peptide (DGP) assay.
Negative             < 15.0
Positive             Equal to or > 15.0

Test                         Flag     Result     Units     Range     Status
ANTIGLIAD IGG     N     13.6     U/mL     <15.0
This test was performed using a deamidated gliadin peptide (DGP) assay.
Negative             < 15.0
Positive             Equal to or > 15.0

So the biopsy was “you may have celiac disease” but the blood work is negative. Confusing to the say the least.  

[kareng]

How are they explaining the " near total blunting"?  Because that is a medical finding they better be trying to figure out if they don't think it's from celiac.

[cyclinglady]

It is possible to test negative on the blood tests and positive on the biopsies.  Doctors will confirm with Gene testing and a gluten-free diet.  

Open Original Shared Link

If it not celiac disease, there are many other things than can cause villi damage and your doctor needs to identify the cause.

Keep advocating for your health!  Do not give up!

 

 

 

[Fyremaker]

Thanks all for the comments.  Any thoughts about the test result numbers?  Are they borderline negative or totally negative. 

I'm going back to the specialist next week to discuss the biopsy and test results.  Any advice about what questions I should be asking?  I'll admit I feel a little lost and not sure of what to ask about, let alone how to procedure into the future. 

[cyclinglady]

Yeah, like what is wrong with me? ? Seriously, you can ask for many things:

1) re-run the panel

2) ask for the gene test (helps to rule out celiac disease)

3) then go on a gluten-free diet for six months to a year to look for symptom reduction and follow-up with another biopsy.

4) if that fails, check for other things like milk, parasites, virus.....anything that can cause villi damage like celiac disease.

You can test negatively on the blood test and still have celiac disease.  Not common but it can happen.  Google it.  

In the meantime, keep eating gluten if you want to do step 1.  I am not a doctor, but your current tests results look negative.....but you have some serious villi damage that needs to be addressed.  Keep researching.  Learn about all things that can cause villi damage so you can feel better and have better conversations with your doctor.  Knowledge is power! Just don't drive yourself crazy and assume the worse.    Keep all medical records (everybody should do this). 

 

 

[squirmingitch]

Open Original Shared Link

Open Original Shared Link

 

[squirmingitch]

Fyremaker, do you have a copy of the actual pathology report on the biopsies? How many did the doc take and from what areas? Does it say more than this that you wrote?

A.  NEAR TOTAL VILLOUS BLUNTING WITH INCREASED INTRAEPITHELIAL LYMPHOCYTES, CONSISTENT WITH CELIAC DISEASE.
B.  ANTRAL MUCOSA WITH MILD TO MODERATE CHRONIC ACTIVE GASTRITIS.”

 

Can you post that report?

Finally, there is the 4 out of 5 rule for a dx. See:

Open Original Shared Link

And this might be worth a read for you:

Open Original Shared Link

[ironictruth]

Dr. Google seems to imply that an overall High IGA is usually associated with some kind of autoimmune process. Is there autoimmune stuff in your family?

[Fyremaker]

Here is the total report:

Specimen(s) Received

           

Comments

A.  Duodenum.  biopsy. 
B.  Stomach, antrum.  biopsy. 

  Clinical Information            

Comments

A.  Epigastric abdominal pain, cough, abnormal UGI series
Findings: erythematous mucosa in antrum and duodenum

  Gross Description            

Comments

A.  The specimen is received in formalin, labeled with the patient's name, and designated as:
   Site: duodenum
   Number of biopsies: 2
   Greatest dimension: 4 mm
   Color: tan
It is entirely submitted in one cassette

B.  The specimen is received in formalin, labeled with the requisition sticker B, and is designated as :
   Site: antral
   Number of biopsies: 2
   Greatest dimension: 2 mm
   Color: tan
It is entirely submitted in one cassette
   with an unstained slide prepared  for possible immunohistochemistry stains for Helicobacter pylori

  Microscopic Description            

Comments

A.  Microscopic examination supports the diagnosis.

  Diagnosis            

Comments

A.  NEAR TOTAL VILLOUS BLUNTING WITH INCREASED INTRAEPITHELIAL LYMPHOCYTES, CONSISTENT WITH CELIAC DISEASE.
B.  ANTRAL MUCOSA WITH MILD TO MODERATE CHRONIC ACTIVE GASTRITIS.
NO INTESTINAL METAPLASIA OR DYSPLASIA.
IMMUNOHISTOCHEMISTRY FOR H. PYLORI: NEGATIVE.

 

As for autoimmune diseases, yes maternal grandmother had lupis.

[squirmingitch]

Looks like the GI took biopsies from all the right places & the correct number of them. I would request a repeat of the blood work - make sure to continue eating gluten every day. It is entirely possible that the lab goofed on your blood work. I would also request the gene test to see if you have the celiac gene(s). 

I found this & it's a really interesting read. :

Open Original Shared Link

Here is the celiac disease diagnostic Testing Algorithm from the Mayo Clinic:

Open Original Shared Link

You may be seronegative celiac as seen on the Mayo algorithm. Here are some more references on the subject of celiac seronegativity:

Open Original Shared Link

Open Original Shared Link

 

 

[Fyremaker]

Thanks for the replies, I have a lot to read. 

I've been gluten free ever since the 8th of Oct, which seems to help (first thing that ever did), but did not go away completely, some days are better then others.  I also feel that the pain has a mental/anxiety connection (not sure, stress, psychosomatic?).  Whatever this problem is it's connected to my stomach/gut and food. 

It doesn't help that I'm an American medical consumer and I want instant, cheap relief, yesterday  

[squirmingitch]

Well if you want any more celiac testing you'll have to eat gluten again or you'll get false negatives. Just so you know. And when celiacs go back on gluten for a gluten challenge, they almost always have much, much stronger reactions to it & many times are unable to complete the challenge.

As to some days better than others..... that's normal. It's going to be like a roller coaster for a while and in your case, with the damage to your villi, it might take longer than shorter but everyone is an individual so we heal at different rates. Just don't expect major improvement for at least 6 months. I don't think you stated your age but that's a factor too --- the young generally have the advantage in healing times.

Anxiety is as common as rice with celiac. I want to warn you that you may (most of us do go through some form of it) get gluten withdrawal. It's freaky & it's real. Just use the search feature here & you'll hit lots of posts about it.

Be sure to read the Newbie 101 at the top of the Coping Section so you can make sure how not to get cross contaminated.

[Posterboy]

Fyremaker,

I know there is a more up to date reference to this but I can't ever seem to find exactly what I want using the search function on celiac.com so here is the older reference on celiac.com but just Google Benicar and Celiac sprue symptom's.  Some medicine can cause some of these same symptom's.

https://www.celiac.com/articles/22969/1/Blood-Pressure-Drug-Side-Effects-Mimic-Celiac-Disease/Page1.html

It could also be ibuprofen if you have a lot of pain you are dealing with according to the dailymail

Open Original Shared Link

So don't rule other causes without doing a thorough examination of your environment but if going gluten free already helps then I think you have found the trigger.

Timeline and history are important with diagnosing someone with any disease.

I had similar symptom's many years ago now when trying Psyillium fiber (Metamucil) for regularity.  It made me anything but regular!  Did your downhill slide start soon after you started the Pysillium?

If so you could be having an allergic reaction and have not put 2+2 together until you have stopped to think about it.  Open Original Shared Link despite being gluten free and not until I stopped my dietary fiber did my bloating, distension and gas go away.

I hope you have found your trigger.

But what I think is happening and I know this is controversial but new research from Columbia University seems to bare this out that when blood test are positive villi damage is actively occurring but when the blood test is negative the villi has already been destroyed ie blunted as someone on this post describes.

The care2 site summarizes these finding very well I think about the difference between wheat sensitivity, NCGS and Celiac disease.

Open Original Shared Link

Quoting

"People with suspected celiac are Open Original Shared Link that looks for anti-gluten antibodies. The disease is then diagnosed with an intestinal biopsy showing this damage. However, celiac patients do not have an associated spike in their blood markers indicating high immune activity.

This is where NCGS patients differ. While these patients don’t show the same kind of damage when they’re given a biopsy, their blood panels tell a completely different story. This group showed a spike in blood markers associated with intestinal damage unlike anything seen in the celiac or control group. They also showed a systemic immune reaction after consuming wheat, which is a major difference from the more limited immune reaction of celiac patients."

Read the whole article for yourself.

We like to think in absolute's meaning if it is one negative (blood) we don't understand how the other is positive (biopsy).  But here I think it does a disservice.   It is not both has to be positive to have a positive result and why you could first be positive blunting but negative blood antibodies.

I think the history of the "gold standard" is instructive here as well. Read the whole "Gluten Lies" review if you are up to it by the Dangerous Grains Author Dr. Hoggan as seen in the latest edition Journal of Gluten Sensitivity and posted on Celiac.com under recent news articles.

Link provided here https://www.celiac.com/articles/24551/1/A-Review-of-The-Gluten-Lie---And-Other-Myths-About-What-You-Eat-by-Alan-Levinovitz-PhD/Page1.html

Quoting Dr. Hoggan in his review of the Gluten Lie

"It appears that Dr. Levinovitz has not experienced the challenges of getting appropriate testing for celiac disease, so he doesn't understand.

Perhaps he missed all the twists and turns that researchers have experienced on their way to choosing villous atrophy as the defining characteristic of celiac disease? He may not realize that the "gold standard" intestinal biopsy was a retrofit added to the diagnostic criteria for celiac disease to counter the widespread resistance to Dr. Dicke's claim that dietary gluten was the cause of celiac disease.

Gastroenterologists simply wouldn't believe that gluten could cause celiac disease without some rigorous testing that ultimately excluded many of the folks who were previously diagnosable with this ailment, many of whom died from it.

So the diagnostic criteria began with a constellation of gut symptoms, then it relied on an intestinal biopsy showing damage that was reversed by a gluten free diet. Now, those who have the same symptoms, which also respond to a gluten free diet, and who might previously been diagnosed with celiac disease, are now thought to have non-celiac gluten sensitivity."

If the "gold standard fails us" it is because it probably is a poor standard but if we can believe the new research by Columbia University then when "Both"  the gluten antibody test from a blood serology panel is POSITIVE for an active ongoing villi crypting  (atrophy) and biopsy is POSITIVE for "blunted" Villi for those Celiac's at another time it is for those who have already destroyed the majority of their villi as proven by biopsy then both could be "first  I am Celiac  and now I am not" because both don't easily match up.  But if both alone are POSITIVE indications of a Celiac diagnosis.  Then we have our answer.

But the Columbia research clearly indicates both do not occur at the same time which matches your results perfectly according to these new findings.

I will quote again for easy reference

"This is where NCGS patients differ. While these patients don’t show the same kind of damage when they’re given a biopsy, their blood panels tell a completely different story. This group showed a spike in blood markers associated with intestinal damage unlike anything seen in the celiac or control group. They also showed a systemic immune reaction after consuming wheat, which is a major difference from the more limited immune reaction of celiac patients."

Quoting again "However, celiac patients do not have an associated spike in their blood markers indicating high immune activity." that you might expect in blood panel so one could be negative (blood work and  one positive (biopsy) and they both are positive for Celiac diagnosis it just those with high immune activity have not YET blunted their villi the way one expects to find in "gold standard" biopsy.

Which according to Dr. Hoggan is not so "gold" as maybe stone age treatment of Celiac's.

This explains perfectly why one does not have to match the other to have a positive diagnosis.

Only if doctor's knew more about this latest research untold suffering could be avoided.

The good news as the care2 article summarizes

Quoting "Though the cause of the two conditions seems to be very different, the study confirmed that the best treatment is the same for both conditions. After six months of only consuming Open Original Shared Link, the NCGS group reported a significant improvement in their digestive and non-digestive symptoms, and the immune system markers identified earlier in the study had normalized."

I hope this is not too much information to digest all at one time.  You may want to reread the Care2 article a few times to completely understand this new research especially if this is the first time you are reading it.

SADLY if Columbia University is right your Villi by the time the "biopsy" low immunity level has occurred then most of your villi have already been destroyed.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

**** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your regimen.

This is my opinion only but I hope it is helpful.

But/just after years of research which can be hard to interpret sometimes it makes the most sense to me given your results and new research on the topic.

Posterboy,