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

Internal Abdominal Itching, And Uncertain Diagnosis


doya

Recommended Posts

doya Newbie
Hello, I am wondering if any of you has ever experienced internal abdominal itching that would cause a lot of nausea, due to celiac disease or gluten sensitivity.
Also, I have a question. I had a biopsy 9 months ago that showed some inflamation on my duodenum. When I showed the results to my doctor he said that I don't have celiac disease, but because the resoults said: "the finding may correspond to type 1 according to the classification of marsh", since I didn't really trust my doctor I asked a gastroenterologist on line,  that told me that I was border line. I don't understand the different diagnose.
Still I was on  gluten free and lactose free diet (I'm lactose intollerant) but my simptoms have not changed.
Can anybody help??

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



Celiac.com Sponsor (A8-M):



cristiana Veteran

Hi Doya and welcome to the forum.

saw your other post - you say that the itching has now gone over to your left side, having started on the right.  I have bad irritation in my chest, under the breast, and it wraps around to the back on my left side, these last three months.   It has been suggested it is shingles - there is a type without a rash. See my recent post on Costochondritis.   In my own case the level of irritation makes me feel very nauseous on a bad day so I totally sympathise  there.  Do you find the irritation is worsened by heat, exercise, tight clothing, caffeine, or anything else? 

LauraTX Rising Star

Cristiana- Use your mouse to click outside of the box that the quoted text is in, and then start typing.  You also do not have to quote someone each time you reply, you can just hit the "reply" button, people can read the post before you no problem.

 

Doya-  Do remember that not everything is due to Celiac or Gluten.  Have you seen a doctor about your abdominal discomfort and itching?  Especially with the nausea, it sounds like it could be the gallbladder, but without seeing a doctor and getting some imaging done, you cannot rule out a separate issue from your gluten issues. 

 

If you were already eating gluten-free before your biopsy, you could have had a false negative.  But you can be diagnosed with your level of inflammation and positive bloodwork,  so if you would like to share what your bloodwork said, we can get a more complete picture and see about helping you a little more.

dolphin005 Newbie

Cristiana- Use your mouse to click outside of the box that the quoted text is in, and then start typing.  You also do not have to quote someone each time you reply, you can just hit the "reply" button, people can read the post before you no problem.

 

Doya-  Do remember that not everything is due to Celiac or Gluten.  Have you seen a doctor about your abdominal discomfort and itching?  Especially with the nausea, it sounds like it could be the gallbladder, but without seeing a doctor and getting some imaging done, you cannot rule out a separate issue from your gluten issues. 

 

If you were already eating gluten-free before your biopsy, you could have had a false negative.  But you can be diagnosed with your level of inflammation and positive bloodwork,  so if you would like to share what your bloodwork said, we can get a more complete picture and see about helping you a little more.

I'm glad I found this thread and the previous one that was just closed.  Actually, what I am dealing with matched on the other thread with the internal itching.  I get the internal itching between my breasts and just below there.  Seems like an esophagus itch.  I can't find much about it and doctors don't seem to know.  I was getting stomach rashes too, but after a year of trying to figure it out, finally did. I guess I am intolerant to fruit/fructose.  The rashes stopped, but this internal itching has not.  I guess the only thing left to try is a naturopath and chiropractor.  I am at my wits end and when you try and search, cancer comes up all the time.  Freaks me out.  If anyone else has gone through this or has any insight, please let me know.

  • 2 weeks later...
cristiana Veteran

I'm glad I found this thread and the previous one that was just closed.  Actually, what I am dealing with matched on the other thread with the internal itching.  I get the internal itching between my breasts and just below there.  Seems like an esophagus itch.  I can't find much about it and doctors don't seem to know.  I was getting stomach rashes too, but after a year of trying to figure it out, finally did. I guess I am intolerant to fruit/fructose.  The rashes stopped, but this internal itching has not.  I guess the only thing left to try is a naturopath and chiropractor.  I am at my wits end and when you try and search, cancer comes up all the time.  Freaks me out.  If anyone else has gone through this or has any insight, please let me know.

Hi Dolphin, welcome to the forum.  

 

A lot of us on here are dealing with problems that the doctors can't identify immediately or agree on. It can be very frustrating and sometimes scary.  When one is looking for answers it is normal to look to the internet for answers... but then one finds something scary on google!   

 

I know exactly what you say when you say you feel at your wits end with this irritation, on a bad day that is exactly how it feels.   Have you been diagnosed with Celiac disease?  It does seem a lot of us have problems with itching, for whatever reason.  

 

I am glad you have been able to identify that fruit/fructose was causing the rash.  How long ago was that?  Could it be the area is still healing?

  

I have found that avoiding caffeine and chocolate helps to some degree, not getting too hot or wearing tight clothing over the offending areas.  Stress definitely makes things worse.  I still don't have a diagnosis for the itch  :( - but I won't give up hope, I'm hoping a consultant I am seeing today might have the answer, or even better, it might just go away!

dolphin005 Newbie

Hi Dolphin, welcome to the forum.  

 

A lot of us on here are dealing with problems that the doctors can't identify immediately or agree on. It can be very frustrating and sometimes scary.  When one is looking for answers it is normal to look to the internet for answers... but then one finds something scary on google!   

 

I know exactly what you say when you say you feel at your wits end with this irritation, on a bad day that is exactly how it feels.   Have you been diagnosed with Celiac disease?  It does seem a lot of us have problems with itching, for whatever reason.  

 

I am glad you have been able to identify that fruit/fructose was causing the rash.  How long ago was that?  Could it be the area is still healing?

  

I have found that avoiding caffeine and chocolate helps to some degree, not getting too hot or wearing tight clothing over the offending areas.  Stress definitely makes things worse.  I still don't have a diagnosis for the itch  :( - but I won't give up hope, I'm hoping a consultant I am seeing today might have the answer, or even better, it might just go away!

Hi Cristiana,

 

Thanks for the response.  I have not been diagnosed with celiac or even gluten intolerance, however, I have been off gluten for several months at a time with absolutely no differences in how I feel.

 

I just figured out the fructose intolerance about a month and a half ago and it took me a year.  The internal itching in the esophagus area is scary and annoying.  However, I have eliminated cinnamon and it seems to be better, but other things trigger it too.  I just don't know anymore.  I am debating chiropractor and a naturopath.  I know stress makes things worse, but it hard not to stress when you don't know what's going on.  Now I have out of no where started with upper back pain when I have never had back issues before, so that freaks me out too lol.

 

How was your appointment?  Did they give you any ideas?

cristiana Veteran

Hello again.  I think you should be congratulated on finding out what you have about the fructose intolerance.  It is sometimes quite hard to track down what is causing these things.  

 

Have the doctors you have seen so far sent you for any particular tests?  Particularly, have they ever done an endoscopy?

 

Also is the back pain to the back of where you are getting the irritation? The reason I ask is my own doctor thought I might have some problem with nerve impingement that might be causing the feeling of irritation/gnawing pain. I do have a dodgy neck when I saw the specialist he said any impingement there wouldn't be affecting the area around my chest and lower torso (on the left hand side) so for reassurance has sent me for two more MRIs of the back to check all OK there nerve wise.  Personally I am convinced I actually am struggling with post herpetic neuralgia (one of my doctors is convinced I have had shingles without the rash).  That tends to be down one side.  

 

Easy to say but try not to be anxious.  I try to remind myself that when you look on the internet cancer is always the thing that comes up  but one shouldn't lose sight of the fact that there are also so many other things that these things can be that although annoying aren't cancer and can be sorted out.  Even if we do face something more serious there is still lots of hope for a positive outcome these days. 


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



Celiac.com Sponsor (A8-M):



doya Newbie

Cristiana- Use your mouse to click outside of the box that the quoted text is in, and then start typing.  You also do not have to quote someone each time you reply, you can just hit the "reply" button, people can read the post before you no problem.

 

Doya-  Do remember that not everything is due to Celiac or Gluten.  Have you seen a doctor about your abdominal discomfort and itching?  Especially with the nausea, it sounds like it could be the gallbladder, but without seeing a doctor and getting some imaging done, you cannot rule out a separate issue from your gluten issues. 

 

If you were already eating gluten-free before your biopsy, you could have had a false negative.  But you can be diagnosed with your level of inflammation and positive bloodwork,  so if you would like to share what your bloodwork said, we can get a more complete picture and see about helping you a little more.

 

Hello everyone! actualIy I had so many test done that I don't know what to do anymore! Colonoscopy, endoscopy, ultrasound, blood test, hidascan for my gallbladder and so on, nothing came out. The only positive test was the one for lactose intolerance, but staying away from dairy did not help. I guess it could really be some food sensitivity, but it's so hard to find!! does anybody know about a real and good test to find out? Also my digestion is so poor, when I go out for dinner the only thing I take is usually boiled rice and steamed veggies, and even then I may not digest... this is why I think that as I'm lactos intollerant, if I could be tested to see if I can digest other food, I'm sure it would turn out that I don't!! So in a way I think that dairy are not the problem, but the problem makes dairy and everything else impossible for my digestion. Anyone any idea?? I also tried so many enzymes and probiotics... no change :(
In a way knowing that I'm not the only one that has this symptom is uite comforting, although I'm sorry you are all soffering too. ciaoo
dolphin005 Newbie

Doya - Maybe  you are intolerant to fruit/fructose as well.  Look into it, maybe?

 

Cristiana - Thank you for congratulating that. I wish it ended there, but suddenly I am having other problems too.  I don't think I mentioned these ones earlier. 

 

I had an endoscopy 2 years ago and was told there was a sliding hernia and some inflammation.  I was put back on PPI's for 30 days and that has continued the PPI trap off and on the last two years.  When I went to the GI about the rashes he was a complete jerk so I am hesitant to go back and here in Ontario, Canada, you need your primary doctor to give you a referral for a specialist doctor, so if I ask for another one, I may have a long wait just for the consultation.

 

The back pain could be an acid reflux thing but that whole diagnosis is confusing too.  I think I am in a trap that has made things worse because of PPI's.  They mess with digestion as it is.  The pain is entire mid-upper back and shoulders with sometimes the bottom of the neck.  Like right now it's dead center of my back.  For quite a while now I felt like I was having minor problems swallowing, but not everything and not all the time. Like some foods would get stuck at the bottom of my throat but only for a second and no pain.  The last two days it has been worse and I made it even worse by taking nexium I think.  I took a nexium last night and suddenly in bed acid was coming up my throat and I have never had it that bad before.  I took a nexium this morning and same thing happened at work.  Now my throat is so sore and trouble swallowing is worse.  I am terrified to go for another edoscopy because now I am scared of Barrett's Esophagus (yet another thing you see a lot when searching - I search a lot and you can find a lot of good info. No, I do not believe everything I read - Not even close to it). So, nexium made me worse. So I took a protonix and gaviscon tonight.  Not helping that I can't stop crying out of fear lol.  I really want to see a chiropractor and naturopath, but am afraid it won't work.  I consulted with a chiropractor and short of the swallowing problems getting worse, he knows everything else and felt it could be fixed.  

 

I appreciate you, I really do.  I don't normally open up like this.  You're right, cancer is the first thing that comes up and that's what keeps getting me so scared. Especially when things come on so suddenly and you can't figure them out or get rid of them.  I know I was diagnosed with fibromyalgia, but I really go back and forth with that/  Not that it doesn't exist, but I think something is causing it. Whether it be environmental, something we're ingesting or pharmaceutical drug-induced.  I dunno.  I think it is over-diagnosed.  Like "here is your diagnosis, nothing we can do, so now we're off the hook to help you and are going to stop"

cristiana Veteran

Doya - Maybe  you are intolerant to fruit/fructose as well.  Look into it, maybe?

 

Cristiana - Thank you for congratulating that. I wish it ended there, but suddenly I am having other problems too.  I don't think I mentioned these ones earlier. 

 

I had an endoscopy 2 years ago and was told there was a sliding hernia and some inflammation.  I was put back on PPI's for 30 days and that has continued the PPI trap off and on the last two years.  When I went to the GI about the rashes he was a complete jerk so I am hesitant to go back and here in Ontario, Canada, you need your primary doctor to give you a referral for a specialist doctor, so if I ask for another one, I may have a long wait just for the consultation.

 

The back pain could be an acid reflux thing but that whole diagnosis is confusing too.  I think I am in a trap that has made things worse because of PPI's.  They mess with digestion as it is.  The pain is entire mid-upper back and shoulders with sometimes the bottom of the neck.  Like right now it's dead center of my back.  For quite a while now I felt like I was having minor problems swallowing, but not everything and not all the time. Like some foods would get stuck at the bottom of my throat but only for a second and no pain.  The last two days it has been worse and I made it even worse by taking nexium I think.  I took a nexium last night and suddenly in bed acid was coming up my throat and I have never had it that bad before.  I took a nexium this morning and same thing happened at work.  Now my throat is so sore and trouble swallowing is worse.  I am terrified to go for another edoscopy because now I am scared of Barrett's Esophagus (yet another thing you see a lot when searching - I search a lot and you can find a lot of good info. No, I do not believe everything I read - Not even close to it). So, nexium made me worse. So I took a protonix and gaviscon tonight.  Not helping that I can't stop crying out of fear lol.  I really want to see a chiropractor and naturopath, but am afraid it won't work.  I consulted with a chiropractor and short of the swallowing problems getting worse, he knows everything else and felt it could be fixed.  

 

I appreciate you, I really do.  I don't normally open up like this.  You're right, cancer is the first thing that comes up and that's what keeps getting me so scared. Especially when things come on so suddenly and you can't figure them out or get rid of them.  I know I was diagnosed with fibromyalgia, but I really go back and forth with that/  Not that it doesn't exist, but I think something is causing it. Whether it be environmental, something we're ingesting or pharmaceutical drug-induced.  I dunno.  I think it is over-diagnosed.  Like "here is your diagnosis, nothing we can do, so now we're off the hook to help you and are going to stop"

  Dolphin

 

I sympathise, we are in the same situation here regarding referrals, you have to go through a GP.  Is there any chance you could ask to be referred to another GI and go privately, if necessary, to speed you up the list?

dolphin005 Newbie

  Dolphin

 

I sympathise, we are in the same situation here regarding referrals, you have to go through a GP.  Is there any chance you could ask to be referred to another GI and go privately, if necessary, to speed you up the list?

I don't believe that is possible, no. Not in Canada.  I am seeing a chiropractor on Monday and I am hoping that he can help fix a lot of this.  His clinic also has acupuncture and other wellness features.  Next step would be a naturalpath and soon as I get back on my feet. I've been horrible the last week with (I think) acid coming up my throat and mouth with extreme sore throat. I have had reflux and burning in my chest before, but never like this where not much is helping. I am hoping it's the hiatal hernia and apparently chiropractors can fix that. 

 

What's new on your end?

cristiana Veteran

I hope your chiropractor can shed some light on things.  As for me, thanks for asking, well, still internal itch, on hip now and chest area again, left side.  Seems to be exacerbated by tight clothes, certain movement, stress... doctors can't agree on what it is so I am not getting any treatment.  Awaiting some scan results in case it is nerve impingement, one doctor's suggestion. I can't help thinking it is shingles without the rash because it feels like there is a rash even if there isn't one and it does seem to be travelling along two dermatomes but on bad days imagine it is something really nasty and that gets me down. So I guess I have joined the club for those of us who are adrift without a diagnosis, I know my last set of blood tests were OK so that gives me some peace of mind but feel caught between wanting to know exactly what it is so it can be dealt with and not wanting to know in case it is something horrible.      :unsure:

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. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    2. - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    3. - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

    4. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    5. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

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

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lalan45
    Newest Member
    lalan45
    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

    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.