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 Test While gluten-free

laurelfla

Recommended Posts

laurelfla Enthusiast
laurelfla
Posted

hi, guys --

i'm sure this has been covered before but i've been super busy lately and haven't had time to search on it. my dad went to get tested for celiac disease because both his daughters have been diagnosed with it. his doc told him to go gluten-free and scheduled the biopsy for a week or two later, i can't remember. while on the diet, Dad notes his bowel movements are different (i can talk about this stuff with the best of 'em now! ;) ) but claims it is probably due to not getting as much fiber in his diet. previously he had been having them 3 times a day or so.

the biopsy results are that some of his villi are rounded (i.e. *some* damage). the doc says it is inconclusive, and schedules bloodwork for the next week as well as bacteria tests (he refused to do the Celiac panel initially bc he said the tests weren't that accurate). my dad goes back for the bloodwork after i think 3 weeks on the gluten-free diet. the nurse has not given him the official numbers yet, but she told him they looked normal.

am i just crazy? granted i don't know all there is to know about this (but y'all do and that's why i'm asking you :D ), but it seems to me the dr. should have started with bloodwork BEFORE telling him to go on the diet, to get accurate numbers, then based on that perhaps and the response to the diet, ordering a biopsy. so now the biopsy and the bloodwork are going to be inconclusive, i imagine, and my dad is not really going to know what's up. he hasn't ever really had any symptoms, btw, other than insane back/disc problems.

what do you guys think? thanks!!

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted
hi, guys --

i'm sure this has been covered before but i've been super busy lately and haven't had time to search on it. my dad went to get tested for celiac disease because both his daughters have been diagnosed with it. his doc told him to go gluten-free and scheduled the biopsy for a week or two later, i can't remember. while on the diet, Dad notes his bowel movements are different (i can talk about this stuff with the best of 'em now! ;) ) but claims it is probably due to not getting as much fiber in his diet. previously he had been having them 3 times a day or so.

the biopsy results are that some of his villi are rounded (i.e. *some* damage). the doc says it is inconclusive, and schedules bloodwork for the next week as well as bacteria tests (he refused to do the Celiac panel initially bc he said the tests weren't that accurate). my dad goes back for the bloodwork after i think 3 weeks on the gluten-free diet. the nurse has not given him the official numbers yet, but she told him they looked normal.

am i just crazy? granted i don't know all there is to know about this (but y'all do and that's why i'm asking you :D ), but it seems to me the dr. should have started with bloodwork BEFORE telling him to go on the diet, to get accurate numbers, then based on that perhaps and the response to the diet, ordering a biopsy. so now the biopsy and the bloodwork are going to be inconclusive, i imagine, and my dad is not really going to know what's up. he hasn't ever really had any symptoms, btw, other than insane back/disc problems.

what do you guys think? thanks!!

You're right about that. The doctors shouldn't be telling him to start the diet and then come back for tests. :blink: His results are going to be inconclusive or negative.

I dont understand this about doctors??? Why do they always tell people to go gluten-free BEFORE the tests....its like they WANT people to have negative results when it comes to celiac disease. I just dont get it. You would think that the doctors would know this *one* very important factor about testing for Celiac...HELLO. It totally baffles my mind.

Felidae Enthusiast
Felidae
Posted

I'm no expert but if his villi are rounded, meaning some damage, isn't that good evidence? His doctor doesn't seem very informed.

Rusla Enthusiast
Rusla
Posted

I find most doctors are not well informed, I truly wonder why they went to school for 7 years, or did they. Most of us are more informed than they are and this includes specialists.

I talked with another Celiac today who lost her best friend to the disease because they never diagnosed her until she was on her death bed. The blood tests were always negative and they told her because she was overweight that she couldn't be celiac.

I don't know how they can say that your fathers test results inconclusive.I think we all need to see veterinarians.

aikiducky Apprentice
aikiducky
Posted

Rounded vili doesn't sound inconclusive to me??? :blink:

Pauliina

jerseyangel Proficient
jerseyangel
Posted

I thought the same thing. Its almost as if that Dr. is trying not to find Celiac!

laurelfla Enthusiast
laurelfla
Posted
  • Author

well, the way my mom put it (and bear in mind this is highly scientific talk), "most of the villi were standing up, waving proud and tall, but every now and then there would be some rounded ones". apparently the damage was not enough to call the biopsy conclusive, but to my mind with the family history there's really no reason to be checking out bacteria. :angry:

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted
well, the way my mom put it (and bear in mind this is highly scientific talk), "most of the villi were standing up, waving proud and tall, but every now and then there would be some rounded ones".

Your Mom has a great way of explaining things. I like that kind of "scientific" talk! :D

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.