Different Reactions

[Jordan Carlson]

Hi everyone! I am some what new to all of this. I found out that I am pretty much confirmed celiac through blood test back in September (going for endoscopy/colonoscopy July 18th to confirm celiac and test for IBD as well). I would like some insight though as to the reactions I have been having.  So obviously in the begeinning, my reactions felt somewhat normal to me since me being almost 27 years old now and living with it my whole life. I thought feeling crappy, bloated and in pain was just normal until I realized its not and thats its actualy issue LOL.  But as I have gone longer periods between accidentally eating gluten, my reactions seem to get much worse every time. I also notice that my reactions vary, Sometimes its terrible stomach pain and diarrea, sometimes its painful/uncomfortable blotaing and sometimes its body aches and muscle/joint tightness. I am assuming the reactions vary depending on the amount of gluten I am exposed too. Just wondering if anyone else has similar experiences or can relate to this.

[trents]

Welcome to the forum, @Jordan Carlson!

More severe reactions to gluten exposure after a significant period of withdrawing gluten from the diet is quite normal for the celiac. When we are consuming gluten daily our bodies are forced to develop some semblance of tolerance to it like it would for any toxic substance. I was largely a "silent" celiac with only minor symptoms before diagnosis but now have been gluten free for over 20 years. When I accidently get glutened now I become violently ill with hours of cramping, emesis and diarrhea. And yes, reactions can vary with the amount of exposure but there seems to be a threshold.

But I have a major concern for the outcome of the endoscopy you have scheduled on July 18th. If you have been essentially gluten free since September you can expect the results of the endoscopy/biopsy to be compromised because healing of the villous lining of the small bowel has been occurring since that time. Did your doctors not tell you to remain on regular amounts of gluten until all testing was complete?

When people who suspect celiac disease have been off of gluten for a significant time as you have, and then seek testing for confirmation, they must purposely reintroduce gluten into the diet for a period of weeks or months in order to ensure valid testing. Current guidelines are evolving for the "gluten challenge" but many are suggesting the daily consumption of 10g of gluten (an amount roughly equivalent to 4-6 slices of bread) for a minimum of 2 weeks (and preferably longer) in order to reproduce damage to the villous lining of the small bowel sufficient to be detected by the the biopsy when they do the endoscopy. If you started back on gluten today you could squeeze in almost three weeks of exposure. Please take heed.

[Paula McVicker]

Hi Jordan 

Trent's comments are spot on.

Unless you want to wait another 10 months for an Endoscopy etc., start eating gluten now. Unfortunately that's how it works, but, if the test confirms Coeliac, then you will be on the right road to recovery sooner.

Good luck on your journey & keep us informed.

[Jordan Carlson]

Thank you for your answeres! Sorry @trents I should have added that I am instructed to consume gluten for 2 weeks prior to the scopes for the reason you stated. Not ideal by any means but I am fortunate enough to of gotten the two weeks off of work for medical leave so atleast I can suffer at home LOL. Unfortunately with the medical personal we have in town where I am located, it has taken almost a full year since the blood work came back positive for celiac to get in for the scopes.  But I am commited to this until the end as it is something I have struggled with my entire life and finally found an answer.