Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    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.

 

 

Link to comment
Share on other sites
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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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 

Link to comment
Share on other sites
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.  

Link to comment
Share on other sites
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!!

Link to comment
Share on other sites
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?

Link to comment
Share on other sites
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

Link to comment
Share on other sites
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?

Link to comment
Share on other sites
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

Link to comment
Share on other sites
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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites

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. Suzi374
      - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it.
    2. Suzi374
      - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be...
    3. Peace lily
      - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    4. Smith-Ronald
      - Smith-Ronald replied to Soleihey's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lymph nodes

      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    5. Bayb
      - Bayb replied to Bayb's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Trying to read my lab results

      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748
    Suzi374
    Newest Member
    Suzi374
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    • Smith-Ronald
      Lymph nodes

      By Smith-Ronald · Posted

      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    • Bayb
      Trying to read my lab results

      By Bayb · Posted

      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
×
×
  • Create New...