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trents

New (for me) celiac disease categories

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For sometime I haven't been keeping a close watch on celiac disease research like used to but I ran across this and it caught my attention: https://www.beyondceliac.org/celiac-disease/refractory-nonresponsive-celiac-disease/

First, I didn't realize that "non responsive celiac disease" is different than "Refractory celiac disease" and neither did I realize that there are two categories of Refractory celiac disease, I and II. I'm still not entirely clear from the article what the difference is between non responsive and refractory but from what I could gather it seems to be that refractory celiac disease is the term applied to those who truly are avoiding gluten altogether.

At any rate, the numbers for all those categories are way higher than I expected and it's kind of discouraging. I think I fall into one of these groups.

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1 hour ago, trents said:

For sometime I haven't been keeping a close watch on celiac disease research like used to but I ran across this and it caught my attention: https://www.beyondceliac.org/celiac-disease/refractory-nonresponsive-celiac-disease/

First, I didn't realize that "non responsive celiac disease" is different than "Refractory celiac disease" and neither did I realize that there are two categories of Refractory celiac disease, I and II. I'm still not entirely clear from the article what the difference is between non responsive and refractory but from what I could gather it seems to be that refractory celiac disease is the term applied to those who truly are avoiding gluten altogether.

At any rate, the numbers for all those categories are way higher than I expected and it's kind of discouraging. I think I fall into one of these groups.

Trents,

I am not up on this topic either but according to the article. . .

"Patients with less than 20 percent of the abnormal lymphocytes have Type I refractory celiac disease, and those with more than 20 percent, Type II"

If you don't have abnormal lympocytes then you are just a "non-responsive" celiac.

but I think like you it is fascinating that there is so many categories of celiac disease. .. so much to keep up with . ..it would confuse a doctor.

the level of lymphocytes determine if your are Refractory I or II.

But I might be reading it wrong? Myself.

But the way I read the article if you don't have abnormal lyphocytes you can't have refractory celiac disease. . ..you are just a non responsive celiac.

I hope this is helpful but it is not medical advice.

Posterboy,

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I think you are probably correct. What threw me was the clause, "an abnormal population of white blood cells in the gut." That could be taken to mean abnormal in kind or abnormal in concentration. If taken in the latter sense then it obscures the difference between "unresponsive celiac disease" and "type 1 celiac disease" since type 1 is defined as having a concentration of less than 20% of these white blood cells. So it must be abnormal in kind as you indicate.

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Wait a minute.  When I was diagnosed, I had lymphocytes and patches of blunted or non-existent villi.  My repeat endoscopy revealed a healed small intestine.  No lymphocytes were noted.  

Lots of things can cause lymphocytes in the gut:

https://www.verywellhealth.com/marsh-stage-of-celiac-disease-562711

Non-responsive celiac disease is just like when you were diagnosed — Villi damage and lymphocytes despite being on a gluten free diet.  Researchers found than many people thought they were doing a good job of being gluten free, but in reality, they often are getting traces of gluten somehow into their diet. Really, how is your GI to know?  You are self-reporting your diet.

Consider a super strict diet (we call it the Fasano diet) and do not go out to eat for a few months.  Eat nothing you do not prepare yourself!  No processed foods because 20 ppm might be too much for you as an individual.    If this does not work, you might indeed have Refractory Celiac Disease or you might have something else.  A GI should work you up for sure!  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

Two years ago, I somehow got gluten into my diet.  My DGP IgA was off the charts.  I had my normal symptoms and new ones.  My GI suggested a repeat endoscopy, but I insisted on the Fasano diet.  It did not relieve my GERD-like symptoms.  I caved and had the endoscopy.  Turns out I have biopsy-confirmed autoimmune Gastritis but my small intestine is just fine.  

Why share this?  Not all symptoms are due to celiac disease.  

 

 

Edited by cyclinglady

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Cyclinglady,

Here is research that explains the types and frequency of chronic gastritis in celiac's.

https://journals.sagepub.com/doi/full/10.1177/2050640616684698

Have you tried some antibiotics for your GERD this research from Howard Hughes Medical (HHMI) indicates that a round of antibiotics might help your GERD.

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers

quoting their research

“Initially we hit a wall, but we realized we actually had a means to an important insight,” said Merchant. “The reason we weren’t able to infect the gastrin-deficient animals with Helicobacter was that they were already colonized with large numbers of bacteria. This led us to understand more clearly that pH is regulating the types of organisms that colonize the stomach Helicobacter at low pH; mixed flora at high pH.”

When the researchers treated the gastrin-deficient animals with antibiotics, the inflammation decreased, as did the bacterial overgrowth."

I hope it is helpful but it is not medical advice.

Posterboy,

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Nice article.  Thank you for thinking of me.  Unfortunately, I do not have the type of Gastritis that is commonly affiliated with celiac disease and that can resolve on a gluten free diet.

I went on a strict (Fasano) gluten free diet prior to my repeat endoscopy.  I finally gave in to,the endoscopy because my GERD like symptoms were not improving.  The biopsies and visual of my small intestine showed complete healing.  My GI said that he went in deep and was very confident that my small intestine had healed from celiac disease (at diagnosis I was a Marsh Stage IIIB).  He even gave me photos of those healthy villi!  However, I had a polyp which he removed from the fundus area (top) of the stomach and sent off to the pathologist along with biopsies.    The pathologist noted that I did not have cancer (yeah!) and He diagnosed Chronic Autoimmune Atrophic Gastritis.  So far, I am still absorbing iron and B-12.  One interesting note was that I did not have this condition when I was diagnosed with celiac disease.  

https://rarediseases.info.nih.gov/diseases/10310/autoimmune-atrophic-gastritis

The only thing that can be done is to monitor me for cancer and deficiencies.  I have been searching for root cause treatments to calm my immune system down.  Not much is out there on the internet.  Most times, AI Gastritis is silent and people do not know they have it until they are very B-12 or iron deficient.  

My AI Gastritis symptoms come and go.   The pinching feeling when I bend over could knock the wind out of you.  I am not sure what triggers it, unlike my celiac disease.  I am trying to be less stressed, but it is difficult.  

Thank you for thinking of me.  

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Cyclinglady,

You may have already read this . ..if so maybe it will help the next person with AMAG.

Here is a nice current study about it entitled "Autoimmune atrophic gastritis: current perspectives".

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5304992/

If you are having trouble with Iron you need to have your stomach acid levels checked. . ..and possibly take some beta carotene.

Here is the research on beta carotene and Iron absorption entitled "Beta-carotene and inhibitors of iron absorption modify iron uptake by Caco-2 cells"

https://www.ncbi.nlm.nih.gov/pubmed/10613757

the latest research on IDA has shown NO stomach as independent cause of IDA.

Here is the research and is is fairly new ....less than 5 years old entitled "Is achlorhydria a cause of iron deficiency anemia?" and they concluded it was.

https://www.ncbi.nlm.nih.gov/pubmed/25994564

Since you are still absorbing Iron your stomach might only be low enough to lower absorption and why taking beta carotene might help your Iron absorption.

I hope this is helpful but it is not medical advice.

Posterboy,

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Cyclinglady,

I came across some more research and one article that linked the research that might help you.

Here is the article that explains it.

https://universityhealthnews.com/daily/digestive-health/low-stomach-acid-the-surprising-cause-of-many-indigestion-symptoms/

Here is the research that explains explains your symptom's of dyspesia entitled

Gastric hypochlorhydria is associated with an exacerbation of dyspeptic symptoms in female patients

On 2/18/2019 at 7:52 PM, cyclinglady said:

Why share this?  Not all symptoms are due to celiac disease.  

https://link.springer.com/article/10.1007%2Fs00535-012-0634-8

I just wish more gastro doctor's thought this way ...but it doesn't fit their dogma as the HHMI article pointed out.

I hope this is helpful but it is not medical advice.

Posterboy,

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