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.

  • 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. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • 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.