Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,956
    • Most Online (within 30 mins)
      7,748
    BLF
    Newest Member
    BLF
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Vaccines

      By Beverage · Posted

      I feel for you. I've had an interesting history with some vaccine, especially t-DAP. One time after just getting it, I remember walking from the pharmacy to my car, reaching for the door handle of my car as my last memory, then waking up slumped into my car with the door wide open hours later. Nobody even knew I was there. I did get a bad cut from rotting rusty wood and probably animal droppings, and it had been 10 years, so I got a booster recently, but took someone with me. My doc back then did say he was concerned about my reactions to vaccines, but we never talked about what alternatives there might be. What is your risk when you do get sick? For me, I almost always end up needing prednisone and antibiotics and have to crawl back to life for months after those are done, prednisone really messes me up, raises my blood pressure to stroke levels, and the antibiotics mess up my intestines really bad. I have to take mega doses of C and D and B's, especially flush niacin, and probiotics.  So preventing flu is critical for me since I always get a long term negative effect from the treatment. I did a lot of research, traditional and alternative medicine, and they all say high vitamin D levels are crucial to so many kinds of illnesses, including flu, cancer, etc.  People with high D during covid had much better outcomes.  I always tested low in D even with high oral supplementation of D3 and K2.  So last year I saved up and bought a real vitamin D lamp, not one of those cheapie ones that you can get on Amazon that don't work, seriously, those are junk. Wow what a difference with a real D Lamp. We haven't been sick all year, which is rare for me, even after being around several sick people or people that came down sick just after visiting. I use the lamp about every other day or if I've been in a group of people or around anyone sick.  I have not yet had my D levels retested since starting with it (will do that at annual check up later this year), but I have not gotten a cold or flu (knock on wood), feel better than usual for a cold wet winter in the NorthWest, and my hair is growing in like crazy, all signs of improved vitamin D levels. It doesn't take long to use, just a few seconds and first and gradually build up. I now do it for a count of 200, which is about 3 minutes. I don't remember all the details on how the body creates its own vitamin D, but I do remember that the body makes a reaction on the skin and you don't want to wash that off for a few hours.  So I do the D Lamp right after my shower, not before.  There are 2 reputable ones that I found in my research: Sperti Vitamin D Lamp uses florescent tubes, you stand and turn in front of it, be sure to get the VITAMIN D LAMP, not the tanning lamp:  https://www.sperti.com/product/sperti-vitamin-d-light-box/ Chroma Vitamin D Lamp is LED's, you can stand and turn in front of it or hold it in your hand and wave it over your body, always keeping it moving so you don't burn:  https://getchroma.co/products/d-light-vitamin-d-light-device-uvb-red-nir AND YOU MUST WEAR SPECIFIC EYE PROTECTION WHEN USING, KEEP ALL PETS AND OTHERS AWAY, THE GLASSES ARE PROVIDED WITH THE D LAMP. I got the Chroma D Lamp when they had a huge sale last year, it's a small start-up company in Seattle.  Sperti is a larger longer term well known, and you can sign up for a 10% discount on their web site.  If Chroma had not had the sale when I was going to buy one, the Sperti would have been fine. They both often have back orders on them, but they do deliver as promised. I have read various articles on the effectiveness of the flu vaccine for example, not always highly effective every year.  Since your risk with vaccines is high, or if your risk of bad illness if you get sick is high, maybe consider how to mitigate both in another way, perhaps a D Lamp. 
    • trents
      Facial pain

      By trents · Posted

      That's what came immediately to my mind as well, Bell's palsy. And don't assume every medical problem is connected to her celiac disease as there is still something known as coincidence. Get this checked out by medical professionals and push for some serious testing. Don't let them brush you off. Be appropriately assertive.
    • Mnofsinger
      Facial pain

      By Mnofsinger · Posted

      Hi @CeliacMom502, As always, consult a medical professional on any advice you receive.  I experience have experienced this exact symptoms you're referring to and will receive them, typically after being accidentally glutened. I've recently been researching this (that's how I came across this posting), because I've been trying to nail down how long I've actually had the celiac genes "activated" or if I was just born with it. Now I wasn't diagnosed until 2023 with Celiac Disease, but not all these other health issues I've had previously point to it all connecting. In 2013 I ended up with Bell's Palsy that I had facial paralysis on one side of my face, where I couldn't even get a twitch for six months, but it took almost a year for "full recovery". I have now came to the conclusion that, because of the B12 vitamin deficiency caused by celiac disease (when not following a strict gluten free diet), caused me to have prolonged recovery from this, because the nerves were healing at a much lower rate> I'm not sure if your daughter has ever had Bell's Palsy, but ever since I have, some of my symptoms when I accidentally get glutened (including right now as I type this message 😄) include a migraine that goes across my eyes, and a shooting pain as you have described that will go across my left cheek and upper jaw, in addition to pain behind my left ear, and painful to the touch. Now, I did immediately go on a gluten free diet, and almost all these symptoms vanished after 3-4 months, but that time frame depends upon the "damage" already done previously.  Hope my situation helps even now this is now almost three years later from your message!  
    • Scott Adams
      Celiac-safe home for summer rental in Washington DC

      By Scott Adams · Posted

      It's nice to see celiac-safe options out there for guest homes.
    • Scott Adams
      How many grams is there in one slice of wheat bread?

      By Scott Adams · Posted

      Your situation involves interpreting elevated Deamidated Gliadin Peptide (DGP) IgG levels, which can indeed be confusing without clear symptoms or additional diagnostic tools like a biopsy. Here’s a possible approach to help clarify your next steps: Understanding DGP IgG: DGP IgG is a blood test often used to help diagnose celiac disease, particularly in individuals with IgA deficiency. However, since you’ve confirmed you don’t have IgA deficiency, the focus should shift to other celiac-specific tests, such as tissue transglutaminase IgA (tTG-IgA) and endomysial antibodies (EMA-IgA), which are more specific for celiac disease. Elevated DGP IgG alone is not diagnostic of celiac disease but may indicate gluten-related immune activity. Non-Celiac Gluten Sensitivity (NCGS): You’re correct that NCGS does not typically show abnormalities in blood tests like celiac disease does. NCGS is diagnosed based on symptoms (e.g., bloating, fatigue, brain fog) that improve on a gluten-free diet, after celiac disease and wheat allergy have been ruled out. Since you don’t currently have symptoms, NCGS seems less likely in your case. Possible Next Steps: Monitor Symptoms: If you remain asymptomatic, it’s reasonable to continue eating gluten and retest after some time. This is because celiac disease can develop or become symptomatic later, and ongoing gluten consumption is necessary for accurate testing. Repeat Testing: Consider repeating the tTG-IgA test, as it is the most sensitive and specific for celiac disease. If this is also elevated, it strengthens the case for further investigation. Genetic Testing: If available, HLA-DQ2 and HLA-DQ8 genetic testing can help rule out celiac disease if negative, as nearly all celiac patients carry one or both of these genes. However, a positive result doesn’t confirm celiac disease, as these genes are common in the general population. Dietary Trial: If testing remains inconclusive and you develop symptoms, a supervised gluten-free diet trial might provide clarity. However, this should only be done after thorough testing, as going gluten-free prematurely can interfere with accurate diagnosis. Biopsy Limitation: Since a biopsy is not available in your town, you’ll need to rely on blood tests and clinical judgment. If your tests remain inconclusive but you develop symptoms, you may need to travel to a facility that can perform a biopsy for definitive diagnosis. In summary, if I were in your position, I would continue consuming gluten, monitor for symptoms, and retest with more specific celiac markers (tTG-IgA and EMA-IgA) in a few months. If symptoms develop or tests remain ambiguous, consulting a gastroenterologist for further guidance would be advisable. Always work with a healthcare provider to interpret results and tailor next steps to your specific situation.
×
×
  • Create New...