Jump to content

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,695
    • Most Online (within 30 mins)
      7,748
    Aanhmcbride
    Newest Member
    Aanhmcbride
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.