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

Should I Ask To Be Tested?

Staciemich

Recommended Posts

Staciemich Newbie
Staciemich
Posted

I was on this web site a couple of years ago when I was having a lot of stomach problems. After tests and an endoscopy, the doctor said that I had IBS.

My stomach has been better, but it seems to act up when I'm stressed or maybe when I eat certain foods.

I recently had some routine bloodwork done for a new doctor, and he told me that my liver enzymes are very elevated. One enzyme that should be in the 30s is in the 500s. He is suspecting Hepatitis, though I don't know where I would have gotten B or C, and I don't really have the symptoms of A. I've been very tired lately with some bloated stomach problems, but that's about it. I am waiting for the results of the Hep tests. If they come back negative, should I ask to be tested for Celiac? I have read that it can elevate liver enzymes and that smelly flactulance, stools and bloating are symptoms. I definitely have those, but I don't really have any other symptoms of celiac.

Thanks,

Stacie

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

Celiac.com Sponsor (A8-M):


AndreaB Contributor
AndreaB
Posted

I had elevated enzymes almost two years ago. ALT and AST. They went down last year. They also ran tests for me for hepatitis which came back negative. I had never heard of celiac at that time. I am gluten intolerant anyway. If you don't need an official diagnosis then go gluten free and see if you notice an improvement. From what I have read there are many false negatives with testing for celiac. My doctor that tested everything to try and find out about the enzymes just chalked it up to fatty liver and told me to have it checked in a year.

lorka150 Collaborator
lorka150
Posted

A few months ago, my liver enzymes were all over 800 (and as you know, under 40 is normal). Gluten was sneaking into my diet (I thought I was gluten free). They tested me for everything. They teetered off around 150, but haven't budged, so I am getting a liver biopsy in two weeks. Perhaps that would help.

jenvan Collaborator
jenvan
Posted

Stacie-

An IBS diagnosis, GI issues and elevated liver enzymes are all commonly found in Celiacs...so I'd say it would definitely be worth getting tested. However, what tested did they initially run on you, did they do a biopsy with the endoscopy?

ravenwoodglass Mentor
ravenwoodglass
Posted
I was on this web site a couple of years ago when I was having a lot of stomach problems. After tests and an endoscopy, the doctor said that I had IBS.

My stomach has been better, but it seems to act up when I'm stressed or maybe when I eat certain foods.

I recently had some routine bloodwork done for a new doctor, and he told me that my liver enzymes are very elevated. One enzyme that should be in the 30s is in the 500s. He is suspecting Hepatitis, though I don't know where I would have gotten B or C, and I don't really have the symptoms of A. I've been very tired lately with some bloated stomach problems, but that's about it. I am waiting for the results of the Hep tests. If they come back negative, should I ask to be tested for Celiac? I have read that it can elevate liver enzymes and that smelly flactulance, stools and bloating are symptoms. I definitely have those, but I don't really have any other symptoms of celiac.

Thanks,

Stacie

I believe everyone in the country from age 2 to the elderly should be tested. That said yes get tested but after they draw the blood go gluten free. Dietary response is one of the best diagnostic tools. Testing misses some of us and if your one of the lucky ones the delay can lead to a great deal of other problems.

queenofhearts Explorer
queenofhearts
Posted

Elevated liver enzymes are what finally got me diagnosed!

My Gastro-Enterologist also told me that "hepatitis" simply means an unhealthy liver-- all the A's B's & so on are different illnesses that can harm the liver. The tests they run are for these known causes. The word "hepatitis" is about as specific as "headache." I'd never realized how many things that sound like clear, meaningful diagnoses are actually just a way to rephrase the problem so that it sounds professional! (IBS, for example!)

Definitely get tested-- even if you already know that gluten-free helps, it is good to have a specialist pinpoint the problem. Other folks take it more seriously, for one thing.

Good luck!

Leah

Staciemich Newbie
Staciemich
Posted
  • Author

The doctor I had seemed to think that it was in my head...that kind of thing. He said he would do an endoscopy just in case, but he didn't take a biopsy. He just took a look. I also had a barium test of my lower intestine I think. Everything came back fine, so he told me that I had IBS and should look for psychiatric counseling to learn how to deal with it. Needless to say, I was not impressed with him at all.

I've had stomach problems since I was a child. I was lactose intolerant as a baby and had to drink soy milk. I was able to have milk products when I got older, but I now know that I have to be careful not to have too much. Once in a while a latte or cup of icecream will give me the runs and stomach aches, so I try to stay away from it by drinking soy lattes and lactose free milk.

My stomach tends to get very bloated and gassy often, but I haven't figured out if it is due to food or stress or both. I know that stress affects me physically, and I get very very gassy after certain foods...like foods with garlic or fruits and vegetables. An apple can really mess me up.

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

Celiac.com Sponsor (A8-M):


chrissy Collaborator
chrissy
Posted

i'd definitely ask to have the test done. i have a tendency to agree with ravenwoodglass about everyone getting tested. i think that celiac should just be a routine blood test that is done when other routine blood work is done.

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
      133,331
    • 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
      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.