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

Which Test Is Most Accurate?

LoisArbuckle

Recommended Posts

LoisArbuckle Rookie
LoisArbuckle
Posted

I have all the symptoms of Celiac disease. Even some childhood problems I'm just now realizing after reading the book "Celiac Disease: A hidden epidemic". I've been gluten free for 3 weeks and most of my major issues have disappeared. This week we went out to my favorite Thai place called Surin. They said their food was wheat free. I got really sick. Now I'm a little confused so I'm looking into testing. I'm having a hard time telling my family I can't eat gluten. I just know they think I'm a hypochondriac. Anyway...

Do you guys know what is the best way for me to get an accurate test? I do not have insurance so, keep that in mind.

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

Celiac.com Sponsor (A8-M):


sbj Rookie
sbj
Posted

I advise you to not mess around with your health. If you are/were having symptoms then you really owe it to yourself to see a medical professional. A single doctor's visit is going to cost you less than these other tests you are thinking about. I think you are jumping the gun, trying to confirm your own diagnosis. (In other words, you have already diagnosed yourself with celiac, now you're not sure so you are going to test for celiac.) That's too quick and it's a bridge too far. You don't know if it was celiac to begin with. Digestion problems can be very serious. What if it is something else entirely - say an ulcer or tumorous growth? Aren't you jumping the gun immediately testing for celiac?

Why not tell us what your symptoms are first as a starting point? If you are considering spending $100, $200, $400 for testing why not spend that amount on a doctor's visit first? Tell us where you live and someone might even be able to recommend a good MD well-versed in celiac who you can trust.

aikiducky Apprentice
aikiducky
Posted

About the accuracy of the tests - if you want an official diagnosis that a doctor will accept, what you need is a blood test (nowadays usually endomysial antibody (EmA), tissue transglutaminase (TTg) and total IGA) combined with a biopsy of your small intestine (so an endoscopy, NOT a colonoscopy).

I think the parent site of this board, celiac.com, has some articles about testing.

None of the tests are 100% accurate, but the blood tests above are quite specific meaning that if they are positive it's very unlikely to be anything else but celiac. Ditto for a positive biopsy.

Stool testing can tell you whether or not you are sensitive to gluten, but not WHY you are sensitive to it. Another way to find that out is by taking gluten out of your diet, the reintroducing it. If step one relieves your symptoms and step two brings them back, you are probably sensitive to gluten. But that doesn't tell you anything about the reason why.

I'm not officially diagnosed myself, I'm four years gluten free and healthy and happy without a diagnosis. But I encourage everyone who still hasn't been gluten free for too long to seek an official diagnosis. After you have been gluten free for a while your intestines heal, and your bloodwork returns to normal, and then it's almost impossible to tell whether or not you have celiac or not. A person with celiac needs to be strictly gluten free for the rest of their life (depending on your age, maybe even for a good 50 years!), including all kinds of life situations where you might need an official diagnosis. If at all possible, try to get one before going gluten free.

Pauliina

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author

oppss

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author
I advise you to not mess around with your health. If you are/were having symptoms then you really owe it to yourself to see a medical professional. A single doctor's visit is going to cost you less than these other tests you are thinking about. I think you are jumping the gun, trying to confirm your own diagnosis. (In other words, you have already diagnosed yourself with celiac, now you're not sure so you are going to test for celiac.) That's too quick and it's a bridge too far. You don't know if it was celiac to begin with. Digestion problems can be very serious. What if it is something else entirely - say an ulcer or tumorous growth? Aren't you jumping the gun immediately testing for celiac?

Why not tell us what your symptoms are first as a starting point? If you are considering spending $100, $200, $400 for testing why not spend that amount on a doctor's visit first? Tell us where you live and someone might even be able to recommend a good MD well-versed in celiac who you can trust.

Thank you all very much for taking time to answer my questions. In a previous post I asked If it was possible to find out on my own if I had celiac. I also posted all of my health issues. I'm not "jumping the gun".. I have many many reasons to think it is celiac. My 2 cousins and aunt have just been diagnosed with celiac disease. We all have had the same problems for years. That's when I found out what the disease was, I'd never heard of it before.

My health issues are: acid reflux, vomiting almost daily(after eating anything with gluten or msg), constipation, depression, bad leg pains (like growing pains, had them since I was a child).

I've been clinically diagnosed with acid reflux, GERD, depression, dyspepsia, and IBS. None of the diets or meds for these worked.

I've had 2 upperGI/endoscopy done. I called the doctor yesterday and asked if he did a biopsy from my small intestine. He said he didn't take any biopsy and didn't even go into my small intestine and that nothing was wrong with me.. I'm just depressed. Then he laughed and gave me 7 different antidepressants within a years time.

I'm desperate and tired of being sick.. and have no money. Please help.

happygirl Collaborator
happygirl
Posted

LA - see my PM.

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author

ALSO-

I've been almost gluten free for 3 weeks. Almost all of the stomach problems subsided. Still having bad leg pains. When I accidently ate gluten I vomited.

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

Celiac.com Sponsor (A8-M):


LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author
LA - see my PM.

Happygirl, what is PM?

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author
Happygirl, what is PM?

PM- Personal Message, got it! : )

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author

OK GUYS... I'm done.

I've been as close to gluten free as possible for 3 weeks and fine I just ate a slice of bread to see what would happen and within 30 minutes I was bloated, hurting, and puking. I have a good enough answer. I just wont eat gluten!

Thank you so much for all your responses. Please keep in touch.

happygirl Collaborator
happygirl
Posted

Hang in there!!!!!

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. knitty kitty
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,332
    • Most Online (within 30 mins)
      7,748
    Nicolah
    Newest Member
    Nicolah
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.