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

Just Cant Help Myself....

Janey

By Janey
in Coping with Celiac Disease

Recommended Posts

GFinDC Veteran
GFinDC
Posted

Hi NoGlutencooties,

 

Here a couple articles on NCGS that might interest you.  They think it is a different immune response than what happens in celiac disease.  They call it the innate immune response.

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html
 

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


NoGlutenCooties Contributor
NoGlutenCooties
Posted

Just saw my GI doctor and she confirmed my analysis.  Celiac can definitely present itself as gluten sensitivity.  It's not even really a case of being misdiagnosed - it's just that there isn't any damage to the villi yet.  The only way to know for sure that it will not further develop into Celiac is to be tested for the genetic marker.  But seeing how approx. 40% of the population have the genetic marker, it is likely that a person who has gluten sensitivity will be one of the people who eventually develop Celiac disease.

(Both the GI doctor and my general doctor independently mentioned the "40%" number.)

Link to comment
Share on other sites
JNBunnie1 Community Regular
JNBunnie1
Posted

I'm confused. Don't we have a number of people on the board who 'don't' have

the Celiac gene but 'do' have Celiac? I don't think I've ever been told before that

you can be genetically ruled out of the possibi

 

This site also mentions that if you do not have the Celiac gene marker, then you cannot get Celiac – but you can still have Gluten Sensitivity.  However, they do not have enough information to know for sure if someone with Gluten Sensitivity and the gene marker will get – or is more likely to get – Celiac.

 

If I have non-celiac gluten sensitivity now, does that mean I would develop celiac disease if I continued to eat gluten?

We really don't have data to answer that. Once we know exactly what triggers non-celiac gluten sensitivity, we'll be able to answer that question. A helpful thing however would be to get tested for the celiac genes: if absent - while you certainly may still be gluten sensitive - you won't stand a chance of becoming celiac.

 

Open Original Shared Link

I'm confused. Don't we have a number of people on the board who 'don't' have

the Celiac gene but 'do' have Celiac? I don't think I've ever been told before that

you can be genetically ruled out of the possibility.

lity.

Link to comment
Share on other sites
answerseeker Enthusiast
answerseeker
Posted

I'm confused. Don't we have a number of people on the board who 'don't' have

the Celiac gene but 'do' have Celiac? I don't think I've ever been told before that

you can be genetically ruled out of the possibi

I'm confused. Don't we have a number of people on the board who 'don't' have

the Celiac gene but 'do' have Celiac? I don't think I've ever been told before that

you can be genetically ruled out of the possibility.

lity.

It's rare I think?

Link to comment
Share on other sites
kareng Grand Master
kareng
Posted

I'm confused. Don't we have a number of people on the board who 'don't' have

the Celiac gene but 'do' have Celiac? I don't think I've ever been told before that

you can be genetically ruled out of the possibi

 

I'm confused. Don't we have a number of people on the board who 'don't' have

the Celiac gene but 'do' have Celiac? I don't think I've ever been told before that

you can be genetically ruled out of the possibility.

lity.

I was at ICDS and the geneticist and the other Celiac experts say that you can't have celiac without the genetic component. There might be a case of it, but likely something went wrong in the diagnosis process. That doesn't mean that people can't have problems with gluten and not be Celiac. There is ongoing research on the possible reasons for that - a few- FODMAPS & a different protein in wheat

Link to comment
Share on other sites
answerseeker Enthusiast
answerseeker
Posted

I read Dr Green's book and I remember it saying you can't have celiac without the gene but then I saw there were some here that did. I wonder how they were diagnosed. If only blood then it could have been something else maybe

Link to comment
Share on other sites
notme Experienced
notme
Posted

i still believe it is all mis-diagnosis.  it is celiac if it is celiac they just told you it was something else because they don't have a test good enough yet.  i didn't have 'pre-celiac' - i had a baby and it turned on the gene -BOOM - celiac.  except every doctor i went to told me it was something else, gave me another pill, pat on the head...  my symptoms didn't change, i just got worse from damage.  for 25 years.   the medical profession must just get a pop quiz on celiac disease in med school, as little as most of them know about it.  even when i was diagnosed they couldn't tell me what to eat or not to eat.  it's not some mysterious medical phenomenon of something developing into something else.  it's sheer ignorance of the disease in the mainstream medical society.  i can't tell you how many people come on here and say that their doctor told them they probably don't have this 'fad disease' and don't bother to test or give them the wrong test.  or mis-interpret their own test!  or tell them to try going gluten free before testing - <that is my personal pet peeve!!  then it's torture for them to go back and eat gluten again, or the test comes back negative.... arghhh!!  my point is, for a very long time very many doctors told me different reasons for the way i felt and none of them put 2 +2 together and got celiac.  it is NOT a new disease, it is just that it's not in their 'repertoire' i guess.  i never heard of it until i is one.  my gi doctor (whom i had the greatest respect for)  told me not to go 'overboard' when i said i was considering cutting out dairy and soy.........  what??  she said they were both gluten free so don't worry.  chalk that up to stupid things doctors say lolz  :P (that's not why i was cutting them out, but she should have known that)

 

ok - rant over.  lolz :)  brought to you courtesy of my personal experience of being misdiagnosed and almost dying of malnutrition... :ph34r:   yay, doctors....

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


JNBunnie1 Community Regular
JNBunnie1
Posted

I was at ICDS and the geneticist and the other Celiac experts say that you can't have celiac without the genetic component. There might be a case of it, but likely something went wrong in the diagnosis process. That doesn't mean that people can't have problems with gluten and not be Celiac. There is ongoing research on the possible reasons for that - a few- FODMAPS & a different protein in wheat

Perhaps the understanding of the genes involved has changed since I last looked

into it? I thought it was like the DQ2,4 genes were understood to be Celiac-possible,

and that DQ8 was thought not to be, and then Raven was diagnosed via endoscopy

and has the DQ8 allele.....

Link to comment
Share on other sites
JNBunnie1 Community Regular
JNBunnie1
Posted

You know what, I just looked up her signature and realized I have absolutely

no idea what any of that means. Does anyone have a reference to an article

that states in plain English what the list of genes are that predispose you to

Celiac?

Link to comment
Share on other sites
kareng Grand Master
kareng
Posted

You know what, I just looked up her signature and realized I have absolutely

no idea what any of that means. Does anyone have a reference to an article

that states in plain English what the list of genes are that predispose you to

Celiac?

 

This is an easy explanation

 

Open Original Shared Link

 

 

And DQ8 is a Celiac gene.  But only about 5% -8 % of Celiacs have that.  Depends on the source.

Link to comment
Share on other sites
NoGlutenCooties Contributor
NoGlutenCooties
Posted

As with anything in the medical field, they can always be proven wrong.  But the current understanding is:

 

"a negative gene test indicates that celiac disease cannot develop in that individual. "

 

Source:  Open Original Shared Link

 

But you can absolutely have gluten sensitivity or a wheat allergy (not the same thing) and not have the gene or Celiac.

Link to comment
Share on other sites

Archived

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

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


  • Member Statistics

    • Total Members
      121,060
    • Most Online (within 30 mins)
      7,748
    Demandcpm
    Newest Member
    Demandcpm
    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

    • Zackery Brian
      Gluten and 30 other Items causing me Severe Muscle Inflamation Pain

      By Zackery Brian · Posted

      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      Joint swelling when ill even on gluten-free diet

      By knitty kitty · Posted

      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
    • knitty kitty
      Still testing positive after being gluten free for one year ?!!

      By knitty kitty · Posted

      @Shireen32,  Take some deep breaths.  Your labs are fine!  Your tTg IgA is so low!  Well done!  Your endomysial IgA is fine.  There's not a level on the endomysial test.  It's just "yes or no" for if you have celiac disease.   No, it's too early to call it refractory. What are you eating?  Please tell us more than meat and veg. Do you consume dairy? Do you consume processed gluten free foods?   Are you taking any prescription medications, herbal supplements, vitamins and minerals?  
×
×
  • Create New...