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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.