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

Intestinal Nerves Hearling?


Jeff In San Diego

Recommended Posts

Jeff In San Diego Rookie

Hi,

I'm brand new here. Actually was lurking on and off for a few weeks but just joined today.

Brief introduction:

50 yr old guy who got obese late in life. Had a gastric bypass (MGB style - www.clos.net) 2 years ago. It actually worked way too well. Weight went way too low. Finally realized it was the bypass coupled with celiac disease. Recent evidence is suggesting that life long wheat intolerance can be caused to turn into full blown celiac disease by a gastric bypass operation. Weight is already dangerously low and still going down, and I can't wait around for months for it to stop going down, so I'm going to have my bypass reversed soon (a unique feature of this kind of gastric bypass is that it can be revised or reversed).

Now on to my question:

I've been gluten free for about 7 weeks now. For about the past two weeks, my intestines (mostly just my "unused" stomach and my whole small intestine I think) seems as if it has sort of "woken up", but in a bad way. It doesn't hurt, it just seems "agitated". Difficult to describe. If it were a person, it would be as if they were making a nonsense noise very loudly and continuously. No message, just "I'm here, I'm here, I'm here" or maybe "AHHHHHHHHHHHHHHHHHHHHHHHHH" nonstop and rather loudly.

I'm wondering if this is a matter of the nerves inside the intestines having been damaged by the celiac disease over the years, and now they are growing back? I'm thinking my brain isn't used to having all that "information" coming in, and doesn't know what to do with it. In a normal person it would perhaps be routed off to some relevant part of the brain and not even shared with me consciously.

Does this sound familiar to any of you? If so, how long did it take to go away?

It is really quite annoying. Makes it hard to feel like it is safe to eat. Never feel "quite right" down there. Please tell me that most people feel "comfortable" fairly quickly???? (another week or two?)

thanks,

jp


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



Celiac.com Sponsor (A8-M):



Tigercat17 Enthusiast

Hi,

I'm brand new here. Actually was lurking on and off for a few weeks but just joined today.

Brief introduction:

50 yr old guy who got obese late in life. Had a gastric bypass (MGB style - www.clos.net) 2 years ago. It actually worked way too well. Weight went way too low. Finally realized it was the bypass coupled with celiac disease. Recent evidence is suggesting that life long wheat intolerance can be caused to turn into full blown celiac disease by a gastric bypass operation. Weight is already dangerously low and still going down, and I can't wait around for months for it to stop going down, so I'm going to have my bypass reversed soon (a unique feature of this kind of gastric bypass is that it can be revised or reversed).

Now on to my question:

I've been gluten free for about 7 weeks now. For about the past two weeks, my intestines (mostly just my "unused" stomach and my whole small intestine I think) seems as if it has sort of "woken up", but in a bad way. It doesn't hurt, it just seems "agitated". Difficult to describe. If it were a person, it would be as if they were making a nonsense noise very loudly and continuously. No message, just "I'm here, I'm here, I'm here" or maybe "AHHHHHHHHHHHHHHHHHHHHHHHHH" nonstop and rather loudly.

I'm wondering if this is a matter of the nerves inside the intestines having been damaged by the celiac disease over the years, and now they are growing back? I'm thinking my brain isn't used to having all that "information" coming in, and doesn't know what to do with it. In a normal person it would perhaps be routed off to some relevant part of the brain and not even shared with me consciously.

Does this sound familiar to any of you? If so, how long did it take to go away?

It is really quite annoying. Makes it hard to feel like it is safe to eat. Never feel "quite right" down there. Please tell me that most people feel "comfortable" fairly quickly???? (another week or two?)

thanks,

jp

Hi Jeff! Welcome to the board! You're in a good place!

I've had a "noisey stomach" before when I was healing and now it comes back when I get gluten. I'm not sure if it's the nerves or not. Since you only been gluten free for 7 weeks, it going to take some time to get better - unfortunately. And since you're still losing weight you might want to eat naturally gluten free foods like fresh meat, veggies, fruit and maybe some rice if it's gluten free. I also start to lose weight if I get any gluten cross containment, so you really might want to re-check everything. It took me a whole year to feel 100%. I'm not saying it's going to be like that for you and hopefully it won't -everyone's different. I had to even stop eating a lot of gluten free processed grain food and I had to buy all new pots and pans in the beginning.

If you haven't already, I would also stay away from milk products. Since the enzyme to digest milk is at the tips of the villi in the small intestines most of us have to drop milk for awhile until we're healed and the villi grow back. Dropping milk really might help you a lot.

Make sure you call about any medications and recheck vitamins. I've been glutened by both even though they said they were gluten free. Sometimes gluten free doesn't mean completely gluten free. There still could be trace amount of cross contamination that we could react to.

I hope you feel better soon! :)

eatmeat4good Enthusiast

I had the very same stomach and intestinal distress. It was like my stomach was waking up. It was uncomfortable and rumbling and loud and constant and started just about 3 weeks into being strictly gluten free. At first I thought I was getting glutened. Then I realized it was just my "Baby Villi" growing back. At least that is how I visualized it. There was so much action and movement that I asked the Dr. for Promethazine to deal with it and it helped me a lot. It went away after a few weeks of healing.

I think it can part of the healing process for some people. Or maybe just you and me ;)

Welcome to Celiac.com and I hope things get better for you and you start to feel good again soon.

Debbie B in MD Explorer

I would like to think that the pain in my abdomen is my intestines healing. I have never had it before the last couple of weeks. I have been gluten free since 1/17/11, except for a few mistakes. Above my belly button, below my sternum. I hope that is what it is. It comes and goes. It ususally goes after I do. sorry for TMI. Any opinions?

quincy Contributor

I would like to think that the pain in my abdomen is my intestines healing. I have never had it before the last couple of weeks. I have been gluten free since 1/17/11, except for a few mistakes. Above my belly button, below my sternum. I hope that is what it is. It comes and goes. It ususally goes after I do. sorry for TMI. Any opinions?

Hi Debbie B,

the location of your pain is exactly where my pain was that led me to the endoscopy which led to my diagnosis. The biopsies showed no barretts or h pylori but alot of inflammation of the lower esophagus where it meets the stomach. I could press in the spot and feel pain. I also had a slight hiatal hernia. All this inflammation extended to the duodenum. When the villi are blunted and intestines inflamed, perhaps the gall bladder is sluggish and your fat digestion isn't happening, and pieces of undigested food and fat are passing into large colon, it just makes for big bacterial overgrowth festival down there.

the key is patience to allow this whole chain reaction of bad symptoms to undo themselves. However, make sure all your tests are being done, stool, endo, colonscopy (mine is next month), blood work to determine other intolerances as well as vitamin deficiencies.... It's alot I know, but if you had years of undetected celiac and perhaps gall bladder malfuncion your best bet is to stop any proton pump inhibitors and get on a good digestive enzyme that has the ox bile in it to assist fat digestion. and no dairy for awhile!!

Debbie B in MD Explorer

Hi Debbie B,

the location of your pain is exactly where my pain was that led me to the endoscopy which led to my diagnosis. The biopsies showed no barretts or h pylori but alot of inflammation of the lower esophagus where it meets the stomach. I could press in the spot and feel pain. I also had a slight hiatal hernia. All this inflammation extended to the duodenum. When the villi are blunted and intestines inflamed, perhaps the gall bladder is sluggish and your fat digestion isn't happening, and pieces of undigested food and fat are passing into large colon, it just makes for big bacterial overgrowth festival down there.

the key is patience to allow this whole chain reaction of bad symptoms to undo themselves. However, make sure all your tests are being done, stool, endo, colonscopy (mine is next month), blood work to determine other intolerances as well as vitamin deficiencies.... It's alot I know, but if you had years of undetected celiac and perhaps gall bladder malfuncion your best bet is to stop any proton pump inhibitors and get on a good digestive enzyme that has the ox bile in it to assist fat digestion. and no dairy for awhile!!

Wow, thanks Quincy! I am having bloodwork this week for thyroid and vitamin deficiencies. Thanks for the info.

GFinDC Veteran

Could be healing. After I went gluten-free my gut started to have spasms. It didn't seem to be a reaction to anything I ate. I figured it was part of the healing process. They did go away after a while, several months. I do get them if I get cc now or get glutened. But not as intense as when I was first gluten-free 3.5 years ago.


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



Celiac.com Sponsor (A8-M):



Jeff In San Diego Rookie

Could be healing. After I went gluten-free my gut started to have spasms. It didn't seem to be a reaction to anything I ate. I figured it was part of the healing process. They did go away after a while, several months. I do get them if I get cc now or get glutened. But not as intense as when I was first gluten-free 3.5 years ago.

Thanks all.

Wow, as a new guy reading all this it seems to me you guys must have had your patience grow back long before your villi did. :)

jp

rj7388 Newbie

Hi Debbie B,

the location of your pain is exactly where my pain was that led me to the endoscopy which led to my diagnosis. The biopsies showed no barretts or h pylori but alot of inflammation of the lower esophagus where it meets the stomach. I could press in the spot and feel pain. I also had a slight hiatal hernia. All this inflammation extended to the duodenum. When the villi are blunted and intestines inflamed, perhaps the gall bladder is sluggish and your fat digestion isn't happening, and pieces of undigested food and fat are passing into large colon, it just makes for big bacterial overgrowth festival down there.

the key is patience to allow this whole chain reaction of bad symptoms to undo themselves. However, make sure all your tests are being done, stool, endo, colonscopy (mine is next month), blood work to determine other intolerances as well as vitamin deficiencies.... It's alot I know, but if you had years of undetected celiac and perhaps gall bladder malfuncion your best bet is to stop any proton pump inhibitors and get on a good digestive enzyme that has the ox bile in it to assist fat digestion. and no dairy for awhile!!

Is this the "infamous Stomach Pain On The Lower Left Side" symptom ?

Am I just healing?

Debbie B in MD Explorer

Is this the "infamous Stomach Pain On The Lower Left Side" symptom ?

Am I just healing?

Gee, I didn't realize this was common. As long as it is related to healing I am good. Mine is actually MUCH better this week than when I posted this. Hopefully, it was just a hurdle. I am expecting ups and down as healing goes and I am looking forward to more ups than downs as we go.

rj7388 Newbie

Gee, I didn't realize this was common. As long as it is related to healing I am good. Mine is actually MUCH better this week than when I posted this. Hopefully, it was just a hurdle. I am expecting ups and down as healing goes and I am looking forward to more ups than downs as we go.

Debbie- I have no idea if this is part of healing process ( I've read it several times while goggling left side pain)

At least it's not PITA anymore!

sandsurfgirl Collaborator

I had so many weird symptoms, including the one you describe while I was healing. It took me 6 months to have ONE symptom free day, although I was always getting a little better here and a little better there. So don't panic just yet. 7 weeks is still baby time. LOL You're just a new kid on the block to the celiac thing. Very few people get the gluten free diet perfect right away, so most likely you've only been truly gluten free for like 3 weeks or something like that.

There was about a week or two when I could not digest a thing around week 10. I freaked out because every single thing I ate made me sick. Then it just went away. I have no clue why my gut did that but it did. Withdrawals and healing are just a crazy time.

Archived

This topic is now archived and is closed to further replies.

  • 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. - sc'Que? commented on Scott Adams's article in Product Labeling Regulations
      1

      Global Experts Recommend Gluten Reference Dose: What It Means for Celiac Safety (+Video)

    2. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      What's your daily meals? Protein bars?

    3. - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

    4. - Seabeemee replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,173
    • Most Online (within 30 mins)
      7,748

    Mel12
    Newest Member
    Mel12
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      What are your daily meals? Guilty pleasure snacks? Protein bars? I feel when looking for gluten free foods they are filled with sugar cholesterol. Looking for healthy gluten-free protein bars. Something to fill since sometimes I feel like not to eat anything. Especially if on vacation and unsure of cross contamination I figure go with a salad and protein bar to fill and play it safe.
    • trents
      Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.
    • Seabeemee
      Thanks for your reply Trents…most appreciated.  I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population?  Also,  I found what you said about NCGS very interesting and I appreciate you mentioning that.  I’ve worked hard to research and advocate for myself with my Hematologist and now with a new GI, since my bowel surgery and to maintain my Vitamin B12 health concurrent with keeping my levels of Iron in the optimal range. I’ve been tested for SIBO (do not have it), biopsy showed negative for HPylori, and have had Fecal studies done (nothing showed up) and I understand how a loss of a large amount of bowel could be highly impacting re: SIBO, malabsorption and motility issues. So I’ve managed pretty well diet and elimination-wise until just recently. That said, this new problem with extreme bloating, distention and upper girth, NAFLD just occured over the last 4 months so it is new for me and I thought celiac might be a possible issue. I’ll probably just continue on in this less gluten/carbs seem to be better for me and see how reintroducing certain foods go.  Thanks again.    
    • xxnonamexx
      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    • JoJo0611
      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
×
×
  • 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.