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

Blood Testing While Gluten Free

Tranquillity

Recommended Posts

Tranquillity Rookie
Tranquillity
Posted

First off, I know that you need to eat gluten to have accurate results. Thing is, I had NO idea my doctor had ordered celiac tests, until I had a needle in my arm and gazed at the papers! I've been gluten free since 2007-10-30, which is 2 months and a couple of days.

I'm not sure which tests were ordered, but lets give him the benefit of the doubt and suppose it's the full "celiac panel". All I know is that it was quite a few tubes, although other (non-celiac) tests were also ordered. The only test I know for sure was in was the tTG antibodies.

Will the results look good no matter what, or will they still look less-than-perfect IF I'm celiac? I really doubt I am at this point, though.

Thanks in advance :)

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

Celiac.com Sponsor (A8-M):


gfp Enthusiast
gfp
Posted

Well it's not so easy..

The difficulties are two fold...

The simplest is that the 'normal' ranges are used and these have a wide range... your antibodies will drop off over time and this is pretty individual, not only for the person but also the time in your life and other health issues etc.

The results will be compared to this norm so a 'slightly elevated' might be significant given the amount of time you are gluten-free but MD's prefer nice categories.

aikiducky Apprentice
aikiducky
Posted

Some people who had a high ttg at diagnosis still have a higher than normal ttg when they have follow up testing six months or so into the diet, so I guess there's chance that you still could have some positives now. It's impossible to say of course since we don't know what your numbers would have been when you were still on gluten. I'd say in any case if anything is even a little bit positive it should be taken seriously. What are you planning to do, are you going to stay gluten free no matter what, or are you thinking that you might not need to after all?

Pauliina

Tranquillity Rookie
Tranquillity
Posted
  • Author
Some people who had a high ttg at diagnosis still have a higher than normal ttg when they have follow up testing six months or so into the diet, so I guess there's chance that you still could have some positives now. It's impossible to say of course since we don't know what your numbers would have been when you were still on gluten. I'd say in any case if anything is even a little bit positive it should be taken seriously. What are you planning to do, are you going to stay gluten free no matter what, or are you thinking that you might not need to after all?

Pauliina

I haven't noticed *any* change whatsoever on the trial diet, so if the blood test is ("completely") negative, I'll go back on gluten to check for reactions. If there is none, I'll most likely stay on.

Celiac wasn't very likely in the first place (long story, but lets just say that my symptoms don't really point to a stomach/digestive problem at all), but I figured a trial wouldn't hurt. :)

Offthegrid Explorer
Offthegrid
Posted

My family doctor ordered a blood test that came back positive. The gastro I was referred to ordered a different blood test over a month later that came back negative. The gastro said my family doc's test wasn't used any more.

But, bottom line, I get sick when I eat gluten. I did a gluten test, and it's painfully obvious that I am gluten intolerant. And when I accidentally eat it, I get sick even when I don't *know* I've eaten gluten. Most recent example is that three weeks ago I drank tea that I didn't realize had barley in it.

All my brother's blood tests and an endoscopy came back negative. He also clearly can't eat gluten.

So, I personally wouldn't put too much stock in a negative blood test. Do a gluten trial after you get the results if they are negative.

Gwen B Rookie
Gwen B
Posted
My family doctor ordered a blood test that came back positive. The gastro I was referred to ordered a different blood test over a month later that came back negative. The gastro said my family doc's test wasn't used any more.

But, bottom line, I get sick when I eat gluten. I did a gluten test, and it's painfully obvious that I am gluten intolerant. And when I accidentally eat it, I get sick even when I don't *know* I've eaten gluten. Most recent example is that three weeks ago I drank tea that I didn't realize had barley in it.

All my brother's blood tests and an endoscopy came back negative. He also clearly can't eat gluten.

So, I personally wouldn't put too much stock in a negative blood test. Do a gluten trial after you get the results if they are negative.

My doctor ordered a Tissue Transglutiminase IGA Serum test a year ago (whatever that is) and the result was a low negative. I was told that I might be low on B12 so to take supplements and this eased my dizzyiness and fatigue for a while but after a year of escalating gastric woes I decided I didn't have time to be sick over the holidays and have been gluten free since Nov 1 07 and dairy free about a month. I have been much better with only a couple of bad days usually when I found out I had had something glutinous or cassein.

One time was particularly bad on Dec 24 I had a supposedly gluten free meal in a restaurant which claims to have gluten free menus. I developed severe hives and swelling so bad my chin disappeared into my neck and had to get shots at the emergency room to counter the histamine reaction, not to mention the usual stomache ache I got later that day.

It makes me somewhat apprehensive of trying gluten again to see if I am coeliac. I had skin allergy testing which only tested posative for soy and hayfever related stuff, not wheat. but I was sure I had had a lot of wheat in that meal and I subsequently spoke to the restaurant manager who appologised and conceded it may have been possible that I had been given the regular soy sauce not the gluten free kind.

The allergist doctor also conceded that he didn't know what caused the hives and that although the IGA result made it 'extremely unlikely' that I was coeliac, if I felt better on a gluten-free diet then I may well be reacting to a protein in wheat or some other gluten culprit.

Should I try it again?

slee Apprentice
slee
Posted

I subsequently spoke to the restaurant manager who appologised and conceded it may have been possible that I had been given the regular soy sauce not the gluten free kind.

Wouldn't the soy sauce have caused you a problem anyways since you are allergic to soy??

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

Celiac.com Sponsor (A8-M):


Gwen B Rookie
Gwen B
Posted
I subsequently spoke to the restaurant manager who appologised and conceded it may have been possible that I had been given the regular soy sauce not the gluten free kind.

Wouldn't the soy sauce have caused you a problem anyways since you are allergic to soy??

May be but usually it just furs my mouth up if I drink soy milk. I've had soy yogurt several times since and not had a reaction. I was told that heating/cooking soy milk might destroy the protein to which I react.

May be there was the combination of wheat and soy which triggered soy. I definately felt bad afterward like I have done in the past when I've been glutened.

I've asked my doctor for a (proper) blood allergy test which is supposed to be more accaurate.

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
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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.