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

Can You Help Me?


stann2

Recommended Posts

stann2 Newbie

Hi Everyone,

I'm a new poster, and I'm also writing from England! I was diagnosed as a celiac 7 years ago when I was living in the U.S. I manage a strict no wheat, no gluten, no oats, rye etc. diet.

Over the last month or so, I've been having some medical problems, and I (and my doctors) are struggling to figure out what is going on. I wanted to post in case anyone had any ideas or suggestions for when I go back and see my doctor on Thursday.

I have been having pain in my lower right abdomen. It is there all the time, but it changes in its intensity... right now it's a dull ache, but it can be like a knife digging into me, or feel like I've been bruised. I've also had sharp pain at times under my left breast, and there is a twisting feeling going on there, too. I have constant watery stools, and I haven't been able to eat anything really for the last two weeks, due to nausea and also some vomiting.

The doctors have eliminated anything to do with my gallbladder, kidneys, liver, spleen, lungs. So now they are focusing on stomach and intestines.

I'm just wondering if any of you might have suffered similar symptoms at all, or have any idea what this could be. I was supposed to fly to the States on Saturday for a 3 week vacation, but I think I'm going to have to cancel :-(

Any help at all would be greatly appreciated!

Stann2 :-)


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

More than likely you've developed a new food intolerance. It is quite common with Celiacs.

I'd start keeping a food diary - what, when, where - key in on dairy, soy, corn - those seem to be the most common. Could also be a group of foods like salicylates, amines, lectins...

Or, you're inadvertently getting gluten or got glutened and are recovering.

Have you tried a "whole food" diet - nothing processed - just meat, veggies, fruits? If symptoms lessen with that its another hint that its a food intolerance of some sort - or you're consuming too much processed food for your level of gluten sensitivity (or sensitivity in general). It seems the longer we are gluten-free the more sensitive we get. And, gluten symptoms change over time.

stann2 Newbie

More than likely you've developed a new food intolerance. It is quite common with Celiacs.

I'd start keeping a food diary - what, when, where - key in on dairy, soy, corn - those seem to be the most common. Could also be a group of foods like salicylates, amines, lectins...

Or, you're inadvertently getting gluten or got glutened and are recovering.

Have you tried a "whole food" diet - nothing processed - just meat, veggies, fruits? If symptoms lessen with that its another hint that its a food intolerance of some sort - or you're consuming too much processed food for your level of gluten sensitivity (or sensitivity in general). It seems the longer we are gluten-free the more sensitive we get. And, gluten symptoms change over time.

Thanks so much for your response. Yes, the doctor actually had me on the FODMAP diet for about 2 weeks before the symptoms got worse... that pretty much eliminated everything except fresh fruits and veg. All I have eaten in the last 3 days is soup, but even that is proving to be problematic. I have noticed over the years that I have gotten more sensitive, but I am a stickler in what I eat. I write everything down and look for trends etc.

In 7 years, I have only ever gotten glutened twice, and both times were bad enough to warrant a hospital visit, so I'm not keen on that happening any time soon! I don't even know if these current symptoms are linked, but in my world when something goes on with the stomach and intestines, wheat/gluten is the first place I go to!

Thanks again for your suggestions :-)

mushroom Proficient

Okay, let's see what's in your soup and see if that provides any clues?? :) Any new supplements or meds or toiletries? New partner? Anything different?

ravenwoodglass Mentor

Have they done stool testing to rule out any nasty food borne illnesses like Salmonella? If not ask that be done ASAP. While that should have been one of the first things they did doctors sometimes don't. I had salmonella once and had symptoms similiar to yours. The doctor just kept saying my 'IBS' (wasn't diagnosed yet) was just acting up. It was 2 weeks before I could get them to test. I got an apology and a script for an antibiotic the next day.

I hope you figure out what is causing the problem soon.

Bubba's Mom Enthusiast

I agree that it sounds like an additional food intolerance. Soy does that to me. It's in all sorts of things.

Did the broth you used for your soup have MSG or autolyzed yeast extract? They can give me trouble too.

Sometimes we know to look to our food logs for certain foods, but seasonings, spices, and additives aren't as obvious.

I hope you can get this sorted out. A hydrogen breath test might be a good idea to check for SIBO?

pricklypear1971 Community Regular

If you go through the salmonella, sibo testing and are clear I'd look at the more difficult things like food groups - sals, histamines, amines, lectins. They are tricky to figure out but can be super problematic. From what I've read by posters here they can be as bad or worse to deal with than gluten.

I have a few other food issues - preservatives, colors, msg - but for the most part are easy to identify and avoid. When you get into salicylates its hard because they are in almost all foods. And they are especially in HEALTHY foods (fruits, veggies). So you can eat tons of healthy stuff and get sicker and sicker. Same with the histamines, amines, lectins.

I certainly hope you get relief soon. Best of luck to you.


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



Celiac.com Sponsor (A8-M):



stann2 Newbie

Hi Everyone,

Thanks again for your replies.

Nothing has changed in my diet. The soup is plain butternut squash soup, made with water and a bit of salt and pepper. No new partner, no new shampoo or toothpaste.

They did do a stool sample and there was no bacteria or parasites. They did an ultrasound which came back fine, also.

I'm a bit concerned that this might be crohn's disease or ulcerative colitis... does anyone have any experience with either of these?

Thanks for your help!

stann2

pricklypear1971 Community Regular

Hi Everyone,

Thanks again for your replies.

Nothing has changed in my diet. The soup is plain butternut squash soup, made with water and a bit of salt and pepper. No new partner, no new shampoo or toothpaste.

They did do a stool sample and there was no bacteria or parasites. They did an ultrasound which came back fine, also.

I'm a bit concerned that this might be crohn's disease or ulcerative colitis... does anyone have any experience with either of these?

Thanks for your help!

stann2

Your diet wouldn't have had to change for it to be a salicylate, amine/histamine, etc. reaction. It would be a new intolerance, so to speak.

And no, I don't have experience with Crohn's /UC.

They do advise a low residue diet for Crohns-perhaps try those foods?

MariaOfColumbia Rookie

I've heard an appendix can give you trouble for quite a while before going critical. And my son had lots of nausea and vomiting before his ruptured. Surely they checked you for appendicitis, though! That's so basic.

pricklypear1971 Community Regular

I've heard an appendix can give you trouble for quite a while before going critical. And my son had lots of nausea and vomiting before his ruptured. Surely they checked you for appendicitis, though! That's so basic.

Excellent. I thought that was in his checked list but I don't see it.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,015
    • Most Online (within 30 mins)
      7,748

    Rockette47
    Newest Member
    Rockette47
    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

    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
    • JoJo0611
    • Martha Mitchell
      Scott I also have different symptoms than most people. It affects me bad. Stomach ache, headache, nauseous, heart racing, whole body shaking, can't walk then my throat starts to close. It attacks my nervous system. The only thing that saves me is a 1/2 of Xanax...it calms down my nervous system 
    • Martha Mitchell
      Scott Adams. I was dealing with a DR that didn't care about me being celiac. I repeatedly told him that I was celiac and is everything gluten-free. He put an acrylic lens from j&j. I called the company to ask about gluten and was told yes that the acrylic they use has gluten....then they back tracked immediately and stopped talking to me. The Dr didn't care that I was having issues. It took me 6 months and a lot of sickness to get it removed.... which can only happen within 6 months. The Dr that took it out said that it was fused and that's why I lost vision. If they would have removed it right away everything would be fine. He put in a silicone one that was gluten-free and I've had no issues at all in the other eye. Do not do acrylic!
×
×
  • 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.