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

Celiac Disease And Gluten Intolerant?


glutenfreegirl

Recommended Posts

glutenfreegirl Enthusiast

Hi there I am confussed I was told my son and I where not celeiac based on our blood test so we contiunue eatting gluten....however not feel any better and had been following a vegan lifestyle for over 2 years found out I was serverely deficient in protein not to say all vegans are of course but I was clearly not doinf it properly and eatting large amount of carbs...Hmm still feeling realy bad ND suggested I try eat right for your blood type which states for my blood type I eat NO gluten and few serving of grains a week if necessary, lots of greens, fruits and lean organic if possible animal protein. So I gave it a shot and wow with in a few days my energy was back my anxiety was disappearing my hair was shiney again and my sadness had lifted,,,so was it the gluten or the protein I think it was the two together...what do you think? so if my blood work says no celeic disease my ND say there are many false psoitives and she hates the test for that reason she beleives I am very gluten intolerant and recommends the entrolab test so we can see to what degree what does this all mean? can anyone help and why is gluten/celiac such a hard sell to people I find people kind of give you that oh brother look when you say gluten intolerant why? this board seem to be the only place along with my ND that takes it very seriously why does the outside world not?

Sorry for so many questions but if it is making so many people ill with so many differnt symptoms why are so many people making my son and I feel like we are crazy....family included (husband and my mom are supportive) but extended family may I add italians who love their pasta...say i am starving my kids and myself and thatis why we are alwasy tired and ill...thanks for the support it seem like peopel are not interested in knowing more about this why??? again thanks for listing I am so frustrated with the way gluten intolerance/celiac is handled I really do beleive alot of poeple think it is all in our heads!!!!


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

There have been some pretty heated threads about this ;)

Celiac disease is an autoimmune disorder that results in damage to the villi in your intestines. The cure is to stop eating gluten... pretty neat, because this is the only autoimmune disorder with a cure! And the cure is free! No drugs, no surgeries.

Celiac disease is one form of gluten intolerance. What a lot of people don't know (including doctors) is that reactions to gluten can damage a LOT more than your intestines... it depends on your genes. People with DQ7, for example, are susceptible to thyroid disorders. DQ5 and DQ6 are associated with neurological damage (migraines, seizures, MS, ADHD). DQ9 is associated with rheumatoid arthritis. Gluten is part of the problem... a lot of people see improvements on a gluten-free diet. Other triggers may be involved too such as dairy, soy, corn, pollen, mold, hormones, viruses, etc... There's a lot of research that needs to be done :)

If you feel better without gluten in your diet, then stick with it! Grains are NOT needed for a healthy diet. Your family might back off when they see you getting better... it just takes time.

Jestgar Rising Star
What a lot of people don't know (including doctors) is that reactions to gluten can damage a LOT more than your intestines... it depends on your genes. People with DQ7, for example, are susceptible to thyroid disorders. DQ5 and DQ6 are associated with neurological damage (migraines, seizures, MS, ADHD). DQ9 is associated with rheumatoid arthritis.

I'm gonna ask you to cite your sources for these.

sbj Rookie
why is gluten/celiac such a hard sell to people I find people kind of give you that oh brother look when you say gluten intolerant why? this board seem to be the only place along with my ND that takes it very seriously why does the outside world not? . . . I am so frustrated with the way gluten intolerance/celiac is handled I really do beleive alot of poeple think it is all in our heads!!!!

I'm one of those who think that gluten intolerance and celiac disease are entirely different things but I don't want to post about that. I want to offer some sincere advice with regards to your issue with people not taking seriously your apparent gluten intolerance. I think you should stop caring so much about what other people think. I think you should recognize that by not eating gluten you are going against the norm. I think you should spend more time justifying to your own self your own decisions for going gluten free, then it wouldn't matter so much to you that others don't take gluten intoloerance seriously:

Open Original Shared Link

"A LOT of people
purple Community Regular

My 2 cents says, when you know the right thing to do, b/c your body is telling you, then that is the answer. So it must be that the others are wrong but only b/c they don't know the truth. If they were celiac their body would tell them the truth and then they would understand.

So meanwhile, be understanding of where they are coming from, then do the best you can to avoid a confrontation with them. Meanwhile gather info you can give them but don't try to make them "get it". Give them time. Could be they are scared. Many people don't care about others problems unless it has happened to them. Closed eyes and ears means closed minds. Opened eyes and ears means opened minds.

glutenfreegirl Enthusiast

WOW thankyou all for such great eye opening advice I wil take all of it and put it in to action

Mother of Jibril Enthusiast
I'm gonna ask you to cite your sources for these.

Here's an article from Scott Adams (on celiac.com) about other autoimmune disorders that have been linked to celiac disease:

https://www.celiac.com/articles/108/1/Celia...ease/Page1.html

Here's an overview of HLA-DQ genetics:

Open Original Shared Link

You can also look at the signatures of people like "ravenwoodglass" to get an idea of the widespread damage that can be caused by gluten and the possibility of recovery.


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star
Here's an article from Scott Adams (on celiac.com) about other autoimmune disorders that have been linked to celiac disease:

https://www.celiac.com/articles/108/1/Celia...ease/Page1.html

Here's an overview of HLA-DQ genetics:

Open Original Shared Link

You can also look at the signatures of people like "ravenwoodglass" to get an idea of the widespread damage that can be caused by gluten and the possibility of recovery.

Thanks!

rinne Apprentice

Denial. :lol:

Seriously, I know a lot of people who don't feel well who will never change their diets.

One friend has arthritis that is so severe her hands are beginning to twist and becoming deformed, she knows white sugar is bad for her but she says she has to have a teaspoon five or six times a day in her coffee. She is on medication for her arthritis which is causing her other problems. Actually, sadly, I don't even know if I can call her a friend anymore because since I changed my diet and have begun to get better I haven't seen her.

But, perhaps I just became too obnoxious, too focused on healthy food. :lol: I think she knows I think she should try gluten free and it irritates her.

She is married to someone with Crohn's who has never investigated whether diet would help him or not!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,035
    • Most Online (within 30 mins)
      7,748

    bostonbell
    Newest Member
    bostonbell
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.