Jump to content

  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Some Research To Consider When In The Diagnosing Prosess

Mum in Norway

Recommended Posts

Mum in Norway Contributor
Mum in Norway
Posted

I came across Open Original Shared Link, and I find it very interesting. It states that not all celiacs will develope villous atrophy, and is therefor never diagnosed with celiac disease.

It makes me think that maybe I am one of those people? It olso (to me personally) raises the question if this meens that what is now called non-celiac gluten intolrance will one day be prooven to be a form of celiac after all?

 

This is just the abstract, but I am getting a hold of the whole report and will read it all when I get the time.

 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GF Lover Rising Star
GF Lover
Posted

We just discussed this in the thread below.  Read through to the end.

 

https://www.celiac.com/forums/topic/104636-just-cant-help-myself/page-1

 

Colleen

dilettantesteph Collaborator
dilettantesteph
Posted

Some with a positive DH biopsy and therefore considered positive for celiac disease get negative intestinal biopsies.  In my opinion, that shows that some celiacs will not have enough intestinal damage for a positive biopsy and may show damage elsewhere.

nvsmom Community Regular
nvsmom
Posted

Good thread colleen. I missed that one.

 

I would guess that NCGS is linked to celiac. Two of my kids had negative tTG IgA tests but they clearly have issues with gluten and their mom (me) is a celiac. It would be quite a bizarre coincidence if they had NCGS and there is no link to celiac disease at all.  It is possible that they have celiac disease but their tests missed it but they were 9 and 5 when tested so it should have been pretty accurate... and I'm not keeping them on gluten just so I can test them again in the future.

 

My guess (its only a guess) is that gluten sensitivity is a spectrum. People get different symptoms, right? I think that the autoimmune attack on the villi is just one symptom, just like nutritional deficiencies is one symptom (can be caused by inflammation), or migraines, ataxia, DH, or GI issues are symptoms.... But that's just a guess. I'm, waiting to see what they'll find next as doctors are always proving themselves wrong... Remember how back in the day a kid couldn't be celiac if they did not experience failure to thrive? Theories change.

GF Lover Rising Star
GF Lover
Posted

Nicole,

 

Just like the area of histamine intolerances is evolving.  In five years it will be interesting to see all the developments in these areas.

 

Colleen 

nvsmom Community Regular
nvsmom
Posted

I completely agree! I just wish doctors would quit with their sweeping statements of "fact" in the meantime. If only doctors would say, "what we think we know right now is..." instead of saying something doesn't exist just because they haven't personally read about it yet.   :rolleyes: The stuff I've had doctors tell me as a fact is quite dsturbing; if I hadn't educated myself, I would never be getting well.  

dilettantesteph Collaborator
dilettantesteph
Posted

I sure agree with that sweeping statement comment.  It's even worse when the doctor seems about 10 years behind in his reading!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


answerseeker Enthusiast
answerseeker
Posted

Some with a positive DH biopsy and therefore considered positive for celiac disease get negative intestinal biopsies. In my opinion, that shows that some celiacs will not have enough intestinal damage for a positive biopsy and may show damage elsewhere.

Interesting thought, I may be one of these celiacs. I was diagnosed by DH but had negative intestinal biopsy, however my GI dr believes it was due to the large amount of prednisone I was on only weeks before testing.

But, I still have malabsorption issues so can you still have malabsorption without villi damage? And the lactose intolerance, that's believed to be due to damaged villi not able to break down the lactose? Based on these factors my Dr does think there is damaged that was missed. Thoughts?

GF Lover Rising Star
GF Lover
Posted

Interesting thought, I may be one of these celiacs. I was diagnosed by DH but had negative intestinal biopsy, however my GI dr believes it was due to the large amount of prednisone I was on only weeks before testing.

But, I still have malabsorption issues so can you still have malabsorption without villi damage? And the lactose intolerance, that's believed to be due to damaged villi not able to break down the lactose? Based on these factors my Dr does think there is damaged that was missed. Thoughts?

There are many different causes of malabsorption, so yes to your question. 

 

Open Original Shared Link

 

Lactose Intolerance is due to the lack of the enzyme lactase.  Other causes can be Viruses, Parasites, Bacteria and Celiac Spru.

 

Open Original Shared Link

 

Hope this helps.

 

Colleen

answerseeker Enthusiast
answerseeker
Posted

There are many different causes of malabsorption, so yes to your question. 

 

Open Original Shared Link

 

Lactose Intolerance is due to the lack of the enzyme lactase.  Other causes can be Viruses, Parasites, Bacteria and Celiac Spru.

 

Open Original Shared Link

 

Hope this helps.

 

Colleen

yes but mine is from my celiac, so in the absense of the other causes and there is a diagnosis of celiac from DH but no detectable villi damage, what causes the malabsorption? that's my question. inflammation?

GF Lover Rising Star
GF Lover
Posted

yes but mine is from my celiac, so in the absense of the other causes and there is a diagnosis of celiac from DH but no detectable villi damage, what causes the malabsorption? that's my question. inflammation?

 

co

 

You would have to rule out Every Single Other Cause...and then take a guess.  I really don't know how to answer your question.  Maybe browse the DH Section and see if others with DH have malabsorption issues not due to villi damage.

 

Good luck.

 

Colleen

answerseeker Enthusiast
answerseeker
Posted

co

You would have to rule out Every Single Other Cause...and then take a guess. I really don't know how to answer your question. Maybe browse the DH Section and see if others with DH have malabsorption issues not due to villi damage.

Good luck.

Colleen

Oh I wasn't really asking for me, I've already been diagnosed and am getting better. More of just general curiosity :-) its been interesting to read through these threads. Makes some light bulbs go on lol

bartfull Rising Star
bartfull
Posted

This makes ME think, or should I say SPECULATE, that there really is no such thing as NCGI. I speculate that if you have been diagnosed with NCGI, you really DO have celiac. No scientific evidence to back that up, just a feeling I have had all along and this article makes me believe it.

nvsmom Community Regular
nvsmom
Posted

I know inflammation is LINKED to nutrient deficiencies (and possibly malabsorption) but I'm not sure how. People with other autoimmune issues or chronic diseases tend to have inflammation and that can lead to malabsorption which then leads to inflammation... I'm not sure where it all starts! Maybe this will be my weekend reading.  ;)

 

All I know is that it isn't just the villi damage that causes nutritional deficiencies. Not just celiacs have those problems; many with NCGI do too.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,080
    • Most Online (within 30 mins)
      10,442
    AdrianJ
    Newest Member
    AdrianJ
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...