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

Pain


Crimson58

Recommended Posts

Crimson58 Newbie

I'm new here. I was diagnosed with Celiac (nontropical sprue) in 2008 after a colonoscopy. I have tried every bit of advice given by a gastroenterologist,not to mention my family doctor. Spent a small fortune on gluten free products in stores. Seems I can go for 4-6 weeks without any flareups,then it hits me again. The damn pain is unbearable. I am also prone to getting diverticulitis,so my doctor always has a CT done to rule out that,since the pain is similar in nature in the same areas. I was prescribed hydrocodone one time for the pain. It barely helped for about 2-3 hours,then it returned. Once it leaves,I'm good for a month or two.I can't deal with it anymore. Any suggestions here how to stop an attack.Is there something over the counter all natural I can buy? Is there even a surgery for this? I would do it in a heartbeat.TIA for any advice


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



Celiac.com Sponsor (A8-M):



T.H. Community Regular

Honestly, my best, completely uneducated guess would be you are getting gluten contamination when things go bad. If that's the case, there's not much you can do to stop an attack except get really, really careful.

IF it's gluten? There's no surgery, nothing to do but make sure you avoid all gluten, although I have heard some people have some minor relief from daily doses of aloe vera juice after they get glutened, if they are prone to severe abdominal pain. Just for a week or so, if I recall right.

It didn't help completely, but it seemed to make the pain go away faster, in the people I know who recommended this to me. I have seen this stuff at health food stores and Whole Foods, in their supplements section.

Re: potential gluten - how many gluten-free products do you eat on a daily basis, would you say? Because they are not actually zero gluten, the small amounts of gluten in gluten-free products can sometimes add up, if you are eating enough of them, and you get glutened anyway, even though you are sticking to the diet.

Dropping the processed foods down to a minimum can help if this is an issue.

What other things do you do to help avoid gluten cross-contamination? What do you usually eat? If you give some details, I'm sure that some here can help point out any potential risk areas and maybe help you finally not have to go through this anymore.

Wishing you good luck!

shauna

peacequeen Newbie

I posted a comment on this by mistake, so I deleted it. I'm new here..so sorry!

Crimson58 Newbie

Honestly, my best, completely uneducated guess would be you are getting gluten contamination when things go bad. If that's the case, there's not much you can do to stop an attack except get really, really careful.

IF it's gluten? There's no surgery, nothing to do but make sure you avoid all gluten, although I have heard some people have some minor relief from daily doses of aloe vera juice after they get glutened, if they are prone to severe abdominal pain. Just for a week or so, if I recall right.

It didn't help completely, but it seemed to make the pain go away faster, in the people I know who recommended this to me. I have seen this stuff at health food stores and Whole Foods, in their supplements section.

Re: potential gluten - how many gluten-free products do you eat on a daily basis, would you say? Because they are not actually zero gluten, the small amounts of gluten in gluten-free products can sometimes add up, if you are eating enough of them, and you get glutened anyway, even though you are sticking to the diet.

Dropping the processed foods down to a minimum can help if this is an issue.

What other things do you do to help avoid gluten cross-contamination? What do you usually eat? If you give some details, I'm sure that some here can help point out any potential risk areas and maybe help you finally not have to go through this anymore.

Wishing you good luck!

shauna

I usually stay on a protein diet,mostly white meat chicken. Turkey,Ham,nothing fried of course. I do eat Gluten free bread,and cereal as well.My problem is,I work in the Gulf of Mexico,and don't see land for weeks.So,I have to take some items with me because once we are offshore,I have to eat what is available on the boat.But that is usually mostly chicken,pork,turkey. Also,I usually eat 3-4 small portions a day,as opposed to anything big due to colon issues. The gluten free items I buy,I would say I use only once daily,sometimes twice,then some days not at all. I just had a CT last week because I feared I might have diverticulitis again. I did not,it was the celiac. Swelling,vomiting,bloting,and immense abdominal pain. I will say though,it seems to attack more when I am home from my job than on the job,possibly due to eating more portions,I can't say. I was not even aware there was gluten in shampoos till I starting researching it more. At any rate,it renders me almost helpless until it passes,which is 24-48 hours on average. Thank you for your response.I'll be outa range for a while,but feel free to reply if you come up with any more possible solutions.Have a nice day!

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. - JoJo0611 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Awaiting Biopsy results

    2. - cristiana replied to emzie's topic in Related Issues & Disorders
      1

      Stomach hurts with movement

    3. - emzie posted a topic in Related Issues & Disorders
      1

      Stomach hurts with movement

    4. - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      3

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,455
    • Most Online (within 30 mins)
      7,748

    jscal6
    Newest Member
    jscal6
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • JoJo0611
      I have had my endoscopy this morning with biopsies. My consultant said that it looked like I did have coeliac disease from what he could see. I now have to wait 3 weeks for the biopsy results. Do I continue eating gluten till my follow appointment in three weeks.  
    • cristiana
      Hi @emzie and welcome to the forum. Perhaps could be residual inflammation and bloating that is causing sensitivity in that area.  I was diagnosed with coeliac disease in 2013 and I remember some years ago my sister telling me around that time that she had a lady in her church, also a coeliac, who  had real pain when she turned her torso in a certain direction whilst doing exercises, but otherwise was responding well to the gluten-free diet. As far as I know is still the picture of health. I often end up with pain in various parts of my gut if I eat too much rich food or certain types of fibre (for some reasons walnuts make my gut hurt, and rice cakes!) and and as a rule, the pain usually hangs around for a number of days, maybe up to a week.   When I bend over or turn, I can feel it.  I think this is actually due to my other diagnosis of IBS, for years I thought I had a rumbling appendix but I think it must have just been IBS.  Reading the experiences of other sufferers, it seems quite typical.  Sensitized gut, build up of gas - it stands to reason that the extra pressure of turning can increase the pain. When I am glutened I get a burning, gnawing pain in my stomach on and off for some days - it isn't constant, but it can take up a few hours of the day.  I believe this to be gastritis, but it seems to hurt irrespective of movement.   Anyway, you are doing the right thing to seek a professional opinion, though, so do let us know how you get on.   Meanwhile, might I suggest you drink peppermint tea, or try slices of fresh ginger in hot water? A lot of IBS sufferers say the former is very helpful in relieving cramps, etc, and the latter is very soothing on the stomach. Cristiana
    • emzie
      Hi! One of the usual symptoms I have with a gluten flare up has deviated a bit and I thought I'd search for advice/opinions here. Also to see if anyone goes through similar stuff. Monday all of a sudden I got really bad pain in my stomach (centre, right under the chest, where the duodenum would be located). I ended up having to throw up for 2 hours, my body was trying to get rid of something from all sides and it was just horrible. Since then I havent been nauseous anymore at all, but the pain has stayed and it always worsens the moment i start moving. The more I move the more it hurts, and when i rest longer it seems to dissapear (no movement). I've had this before, but years ago I think around when I first got diagnosed with coeliac, where each time I moved, my stomach would hurt, to the point where I went to the ER because doctors got freaked out. That only lasted 1 night though, and Now it's already wednesday, so 3 days since then, but the pain persists and remains leveled. it doesn't get crazy intense, but it's still uncomfortable to the point I cant really go out because Im afraid itll turn into a giant flare up again. I couldn't think of where I could possibly have been glutened at this bad of a level and why it hasn't passed yet. I went to the GP, and as long as I have no fever and the pain isnt insane then its fine which I havent had yet. Tomorrow im also seeing a gastroenterologist specialized in IBS and coeliac for the first time finally in years, but I thought I'd ask on here anyway because it still hasnt dissapeared. It also hurts when someone presses on it. Maybe it's just really inflamed/irritated. I'm just frustrated because I'm missing out on my uni lectures and I do a sports bachelor, so I can't get behind on stuff & next to that i'm also going to go to the beach with my boyfriend's family this weekend: ( 
    • Flash1970
      Hi. So sorry to hear about your shingles. There is a lidocaine cream that you can get at Walmart that will help numb the pain.  That's what I used for mine. It can't be put near your eyes or in your ears. I hope your doctor gave you valacyclovir which is an antiviral.  It does lessen the symptoms. If it is in your eyes,  see an ophthalmologist.  They have an antiviral eye drop that can be prescribed.  Shingles in the eye could cause blindness.  I was unsure whether you have celiac or not.  If you do,  follow the diet.  I believe that extra stress on your body does affect everything. Shingles can recur. If you start getting the warning signs of nerves tingling,  see the dr and start taking the valacyclovir to prevent a breakout. If I sound technical,  I am a retired pharmacist. 
    • Scott Adams
      You are right to be proactive, as research does indicate that individuals with celiac disease can have a higher predisposition to enamel defects, cavities, and periodontal issues, even with excellent oral hygiene. While many people with celiac successfully undergo orthodontic treatment without complication, your caution is valid. It may be beneficial to seek a consultation with an orthodontist who is familiar with managing patients with autoimmune conditions or who is willing to collaborate with your daughter's gastroenterologist or a periodontist. They can perform a thorough assessment of her current oral health, discuss your specific concerns about recession and decay, and create a tailored hygiene plan. This second opinion could provide a clearer risk-benefit analysis, helping you decide if addressing the cosmetic concern of the lower teeth is worth the potential risks for your daughter, especially if they are not currently affecting function or her confidence. 
×
×
  • 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.