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 With No Symptoms?


healthyme

Recommended Posts

healthyme Newbie

I was having chest pains later to find out it wasn't the chest it was my stomach. I spent the night in the hospital. It come on suddenly - I got light headed and very weak. I when though countless tests - blood work, biopsy, etc. I took them a week and many conversations with other doctors to tell my I had Celiac disease. I went for a second opinon as I have NO symptoms of celiac disease but the tests come up positive. The second doctor said "I don't know what to tell you, as the tests come up positive but you have none of the symptoms of celiac disease." I'm eating anything and everything a celiac disease person shouldn't be eating and I feel great. I asked if I could retake the tests but he said they would still come up positive. Do I go for a 3rd opinion? Should I obey the celiac diet or should I just say enjoy life the way I am right now. I did lose 60 lbs. in 10 months recently.


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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

Without question, you should start the gluten-free diet. A majority of all celiacs are asymptomatic, which is why so few are diagnosed, yet 1 in 133 people has it.

Asymptomatic celiacs are more common than the symptomatic celiacs, but you hear more of symptomatic celiacs since those without symptoms don't get diagnosed (no problems, so no tests run).

Also, weight loss is a symptom

KaitiUSA Enthusiast

Celiac is not symptomatic. You can feel perfectly fine while the gluten is tearing up your intestine. Weight loss is a symptom of celiac. I lost like 15 pounds in a short period, when I went off of gluten it all came back.

If the tests came back positive you have it. When your blood tests are elevated that means something is in fact going on. Be glad that they picked it up now. Celiac is very underdiagnosed because not only do some peope with it feel fine but others are misdiagnosed because some of the symptoms relate to other things.

You should definately go on a gluten-free diet. Celiacs that do not follow the diet have an overwhelming increase in the chance of cancer and other serious illnesses.

It may seem like a pain in the butt at first until you learn what you can have but don't let that discourage you because it does get easier. If you would like help with things you can have I would be more than happy to help you.

Hope this helps and good luck! :D

dsrcmr Newbie

Defenitely start a gluten free diet. My husband didn't seem to have any symptoms either and he is 33. He felt good too. After an x-ray at the chiropractor, and then a bone density scan- it was determined he had osteoporosis. He didn't feel pain- just was a new patient xray. After blood tests and 2 scopes it was determined he has celiac disease. Now we are going through different tests with my 9 year old daughter who is regular weight and height, feels fine, but yet antibodies are very elevated. Good luck to you.

Amy

MySuicidalTurtle Enthusiast

You may show symptoms later. You cause great damage to your body by eating gluten even if you don't think you are. Many different diseases and complications occur to Celiacs who continue to eat gluten. It will be ebtter for you in the long run to go on the diet and take care of yourself.

tarnalberry Community Regular

As has been noted, MANY people do not feel obvious intestinal symptoms. Some may still get fatigue or joint pain or foggy-headedness or weight loss as symptoms, some not even those. But if you're positive on the antibody test, you've got damage being done to your intestines, and not following the diet will increase your chances of developing osteoporsis, anemia, lymphoma, other intestinal cancers, etc. and generally increase the chances of dying early. False positives are virtually unheard of (particularly if you've had two tests). You may find that you would develop symptoms in a few months or a few years if you continued eating gluten.

Merika Contributor

All this is probably not what you wanted to hear ..... but maybe this will give you a different perspective.

If I could go back in time and get positive celiac diagnosis when i first exhibited symptoms - sudden weight loss, rapid heart rate, dizziness, hospitalization (with no ultimate diagnosis) - I would be immediately gluten-free and positively celebrating *all night long*!! Why? Because after being seemingly perfectly healthy, then a sudden onset of symptoms, which did eventually recede somewhat, and a high gluten diet - fastforward to 13 years later my health is shot, I feel like cr&p every day, and my body may never fully recover. I've been gluten-free one year now, and it is getting better, but if i could have gotten a diagnosis THEN????? Oh my goodness, I'd take it! Yes, it took 12 years before i got a diagnosis, and even then it was almost accidental - i don't exhibit the classic external GI signs of celiac.

Merika


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



Celiac.com Sponsor (A8-M):



grannynanny Rookie

Again, I can only add to the chorus of "take your diagnosis and run with it" messages you are getting. I suspect that you are "younger" and have not yet done the horrific damage to your small intestine that I have. I was in my early fifties when I began to have awful gastric symptoms. Seven years, many tests, and significant numbers of trips to the emergency room later, I am finally a (self) diagnosed celiac. Having been on the gluten-free diet for about 7 months now, I am feeling SO much better. But had I gotten a diagnosis in my twenties or thirties, and had I taken it seriously (since I was symptom-free then), I would have saved myself a lot of pain and suffering. You are, indeed, lucky!

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. - 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.

    2. - 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.

    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. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams 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
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    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

    • 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?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.