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

Confused

tkimzey
 Share

Recommended Posts

tkimzey Rookie
tkimzey
Posted

Hello, I was diagnosed with Celiac 17 years ago by a blood test. I was told the numbers were off the charts and to go on a gluten-free diet. Well 6 years later I had my 1st Endo Which showed no signs of Celiac.  At that point I started to question really having it. Fast forward to today, the DR wants me to eat gluten for 2 weeks before my Endo.... I am only 43 and would hate to eat gluten-free for the rest of my life if I don't need to. Asking for y'alls incite.

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Congratulations! You apparently have been successful with your gluten free diet. Your gut has fully healed and there is no damage to see when an endoscopy is done. Do you know if biopsies were taken when the endoscopy was done? Normally, biopsies of the small bowel lining are taken and set to a lab for microscopic inspection. If damage is minimal it may not show during the endoscopy itself.

tkimzey Rookie
tkimzey
Posted
  • Author
46 minutes ago, trents said:

Congratulations! You apparently have been successful with your gluten free diet. Your gut has fully healed and there is no damage to see when an endoscopy is done. Do you know if biopsies were taken when the endoscopy was done? Normally, biopsies of the small bowel lining are taken and set to a lab for microscopic inspection. If damage is minimal it may not show during the endoscopy itself.

Yes biopsies were done in 3 areas. 

trents Grand Master
trents
Posted
(edited)

The Mayo Clinic guidelines for a pretest gluten challenge is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to blood antibody testing and the same amount for two weeks leading up to an endoscopy/biopsy.

It generally takes around two years for thorough healing of the small bowel lining once a gluten free diet is commenced. Since your first endoscopy was six years post diagnosis, there was plenty of time for that to happen. Also, those who have been eating gluten free for a considerable period of time generally find that their symptoms are more dramatic when they go back on gluten for testing. You lose any tolerance you may have had while still consuming gluten regularly. Personally, if I accidently get a good slug of gluten now I get violently ill.

Speaking of symptoms, what symptoms did you have 17 years ago when you first got tested? Did they improve when you went gluten free?

Edited by trents
tkimzey Rookie
tkimzey
Posted
  • Author
13 hours ago, trents said:

The Mayo Clinic guidelines for a pretest gluten challenge is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to blood antibody testing and the same amount for two weeks leading up to an endoscopy/biopsy.

It generally takes around two years for thorough healing of the small bowel lining once a gluten free diet is commenced. Since your first endoscopy was six years post diagnosis, there was plenty of time for that to happen. Also, those who have been eating gluten free for a considerable period of time generally find that their symptoms are more dramatic when they go back on gluten for testing. You lose any tolerance you may have had while still consuming gluten regularly. Personally, if I accidently get a good slug of gluten now I get violently ill.

Speaking of symptoms, what symptoms did you have 17 years ago when you first got tested? Did they improve when you went gluten 

The only things I can remember is severe pain under my right rib cage, the ER told me I was constipated and that I had IBS. This would happen once a year or so. The first time was 22 years ago and they thought it was my Gallbladder. But I don't recall any symptoms.

trents Grand Master
trents
Posted

Constipation is one of the classic symptoms of celiac disease and celiac disease is often misdiagnosed as IBS. It is also true that there is a higher incidence of IBS in the celiac population than in the general population.

Sobiha Apprentice
Sobiha
Posted

I've suffered from constipation for most of my life but since going gluten free my bowels have improved at lot.  I have noticed though that if I accidently get 'glutened ' the attack is followed by a period of constipation .

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

Celiac.com Sponsor (A8-M):


tkimzey Rookie
tkimzey
Posted
  • Author
2 hours ago, Sobiha said:

I've suffered from constipation for most of my life but since going gluten free my bowels have improved at lot.  I have noticed though that if I accidently get 'glutened ' the attack is followed by a period of constipation .

I am struggling with do I eat gluten for 2 weeks before my Endo or just live with the original diagnosis?  In 2012 I did eat 1 slice of pizza and was SUPER SICK, I ate a handfull of gluten Pretzels on accident(got them mixed up) 6 months ago. And puked 2 hours later... sometimes I can dine out and have diarrhea 15 mins after eating...... but I don't know if that's the lack of gluten for so long and my body is just like what the heck or if it's celiac.  I have struggled with this diagnosis for 11 years!

trents Grand Master
trents
Posted

"but I don't know if that's the lack of gluten for so long and my body is just like what the heck or if it's celiac. "

It's most likely both and. 

Forgive me for being so frank and judgmental but it seems to me you are in denial about having celiac disease and there is no point in pursuing an endoscopy and the two weeks of torture you are likely to experience. IMO, you need to cancel the procedure and just go back to the committed gluten free lifestyle.

tkimzey Rookie
tkimzey
Posted
  • Author
4 hours ago, trents said:

"but I don't know if that's the lack of gluten for so long and my body is just like what the heck or if it's celiac. "

It's most likely both and. 

Forgive me for being so frank and judgmental but it seems to me you are in denial about having celiac disease and there is no point in pursuing an endoscopy and the two weeks of torture you are likely to experience. IMO, you need to cancel the procedure and just go back to the committed gluten free lifestyle.

It is denial! I am tired of this disease and if it's possible that I am not Celiac then, I need answers.  I have had diarrhea for 3 months and Dr's don't know why, that's why the Endo and colonoscopy.

trents Grand Master
trents
Posted

I hope you will keep us posted.

tkimzey Rookie
tkimzey
Posted
  • Author
19 minutes ago, trents said:

I hope you will keep us posted.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4737868/#:~:text=Many patients are diagnosed as,the evaluation of other diseases.

Sobiha Apprentice
Sobiha
Posted
5 hours ago, tkimzey said:

It is denial! I am tired of this disease and if it's possible that I am not Celiac then, I need answers.  I have had diarrhea for 3 months and Dr's don't know why, that's why the Endo and colonoscopy.

I hope all goes well for you and you get some answers soon.

Wheatwacked Veteran
Wheatwacked
Posted
(edited)
On 10/19/2023 at 9:55 PM, tkimzey said:

I am tired of this disease and if it's possible that I am not Celiac then, I need answers.  I have had diarrhea for 3 months and Dr's don't know why,

Aha!  It sucks to follow a diet, supposed to make you feel better, but it doesn't.

On 10/17/2023 at 10:03 PM, tkimzey said:

Well 6 years later I had my 1st Endo Which showed no signs of Celiac.

Well done.   The gov't has mandated certain foods, like wheat flour needs to be fortified with vitamins that otherwise the population would be deficient in.  Gluten free processed foods are not fortified for the most part.  Those vitamins need to be obtained from food or supplements.  With your small intestine healed you can absorb normally but they have to be in the food you eat.

 For your diarrhea try B1 thiamine 500 mg a day and Choline 1000 mg a day.  If you are deficient you will start to improve in a few days.  If not, no harm done because they are essential and the more you eat the better. The Tolerable Safe Upper Limit for thiamine is unlimited and for Choline it is 3500 mg.  Thiamine is essential for metabolizing carbohydrates and Choline for metabolizing fat.  From your exasperation I will guess you are also vitamin D deficient.   There's a test for that.  The test for choline and thiamine is to try it.

On 10/19/2023 at 12:25 PM, tkimzey said:

severe pain under my right rib cage

gas blocked by the constipation gets stuck there.  An enema may help.

You could have other deficiencies, but do not stop Gluten Free.  It will come back in 10, 20 years or more with a vengence.  Did anything else improve? Sinuses, muscle or bone pain?  Brain Fog.  There are hundreds of possible symptoms to Celiac.

 

 

Edited by Wheatwacked

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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.