Confused

[tkimzey]

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.

[trents]

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]

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]

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 October 19, 2023 by trents

[tkimzey]

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]

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]

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 .

[tkimzey]

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]

"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]

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]

I hope you will keep us posted.

[tkimzey]

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]

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]

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 October 23, 2023 by Wheatwacked