Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

Celiac Disease As Well As Other Problems?

willabec

By willabec
in Related Issues & Disorders

Recommended Posts

willabec Contributor
willabec
Posted

Ok, I have been gluten-free for 7 years now (i'm 39 yrs. old). last year had issues with loose stool. went to gi dr. and told me to lay off dairy and take fiber supplement. I did that for a little bit and things got better. I am now back to the same issue. Sorry for being so graphic, but sometimes it's explosive. went back to Gi dr. a couple of weeks ago. i have been writing down what i eat, when i go to the bathroom and what it's like and i can't come up with a pattern, although there probably is one. the dr. told me to take a pancreatic enzyme...seemed to help only a little, also stayed away from too much fat in diet. his office just called and wants me to have a CT scan. I am getting nervous b/c it could be so many other issues. has anyone ever had this problem, being on a gluten-free diet and it not really working? i am going to take the fiber supplement again tomorrow just to see. can a person with celiac also have ibs? i am just concerned that it could be something serious. any help would be appreciated. thanks.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Ahorsesoul Enthusiast
Ahorsesoul
Posted

1. Are you really sure your diet is gluten free? As a nurse I thought I was doing ok until I found this site!

2. Is the fiber supplement gluten free?

3. Are you having problems with another food intolerance?

If you keep a diary of everything that goes into your mouth you should find our what is bothering you.

Link to comment
Share on other sites
JillianLindsay Enthusiast
JillianLindsay
Posted

Of course, the obvious is to make sure 100% you are not somehow getting glutened.

Has your DR done a lactose intolerance test? A food allergies test?

As you know, many people with celiac disease also have lactose intolerance or casein allergy (or other food allergies or intolerances).

Stress and poor diet can also cause D.

I'm sure other people can contribute further ideas :) The best thing is to try not to worry too much (easy to say, tough to do, I appreciate that) and wait to see what your DR says. I went through every test in the book over the last year when I started having seizures and it ended up being celiac disease, a perfectly manageable condition! Hopefully you'll find out it's nothing serious and something within your control.

Good luck!

Jillian

Link to comment
Share on other sites
ang1e0251 Contributor
ang1e0251
Posted

Does this seem like a typical gluten response to you? What are your normal reactions to gluten? You could have developed a secondary food sensitivity but it's tough to pinpoint it with your food diary. Have you had a celiac disease blood panel recently? It might be good to check on your antibodies and see if you're getting sneaky gluten anywhere.

Link to comment
Share on other sites
willabec Contributor
willabec
  • Author
Posted
1. Are you really sure your diet is gluten free? As a nurse I thought I was doing ok until I found this site!

2. Is the fiber supplement gluten free?

3. Are you having problems with another food intolerance?

If you keep a diary of everything that goes into your mouth you should find our what is bothering you.

I am 99% sure my diet is gluten free, especially with the list i have been making. i have not started the fiber supplement and many are gluten free. i cancelled my ct scan...want to try to see if it is a food that is making me like this. i must say that the past few days have been much better. i have been trying to stay away from higher fat foods (not that i really ate alot of them anyway) and not using butter and trying not to eat ice cream. i am thinking maybe lactose sensitivity. if i do eat ice cream, i don't notice anything until the next day. i know each person has a different response time with that. I did reschedule my ct scan for next week. we shall see. i guess what makes me a little nervous is that the dr. did a stool sample and it came back with undigested food in it. i know there are times when this does happen, but i am not sure if i should be concerned, not sure if it's always like that.

Link to comment
Share on other sites
willabec Contributor
willabec
  • Author
Posted
Does this seem like a typical gluten response to you? What are your normal reactions to gluten? You could have developed a secondary food sensitivity but it's tough to pinpoint it with your food diary. Have you had a celiac disease blood panel recently? It might be good to check on your antibodies and see if you're getting sneaky gluten anywhere.

i am not sure....i try very hard not to eat gluten, so i don't know what my typical response is. i am going to try to cut out as much dairy as possible ( i really don't eat alot of it, mostly cheese and ice cream and butter and take some fiber and see if that helps). the past few days i have been better. i asked the dr. about blood work, he said to wait. not sure why, i would think that would be a less invasive proceedure!

Link to comment
Share on other sites
mommida Enthusiast
mommida
Posted

Keep up with monitoring your diet.

By any chance are your falling into the gallbladder risk zone? The four "F" 's Female, Fair, Fat (sorry this is not my wording, and please don't take offense) Forty/Fertile.

Please find a doctor you feel comfortable with and continue testing.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


willabec Contributor
willabec
  • Author
Posted
Keep up with monitoring your diet.

By any chance are your falling into the gallbladder risk zone? The four "F" 's Female, Fair, Fat (sorry this is not my wording, and please don't take offense) Forty/Fertile.

Please find a doctor you feel comfortable with and continue testing.

i am going to keep monitoring, trying the fiber and lactaid, you never know! i am near forty, not fat, female and fair...could be gallbladder? i will do more testing soon, just to be on the safe side. thanks!

Link to comment
Share on other sites
Ahorsesoul Enthusiast
Ahorsesoul
Posted

Before I went gluten-free I always had undigested food in my stool.

Link to comment
Share on other sites
willabec Contributor
willabec
  • Author
Posted
Before I went gluten-free I always had undigested food in my stool.

i really have been gluten free (at least 99.9%) for 7 years....any ideas?

Link to comment
Share on other sites
ravenwoodglass Mentor
ravenwoodglass
Posted
i really have been gluten free (at least 99.9%) for 7 years....any ideas?

Have you checked with companies to make certain that every med and supplement OTC and script are gluten-free? How about non food items, craft items, household repair materials, pet foods and litters, lotions, shampoos everything you come in contact with?

Link to comment
Share on other sites
nasalady Contributor
nasalady
Posted
Have you checked with companies to make certain that every med and supplement OTC and script are gluten-free? How about non food items, craft items, household repair materials, pet foods and litters, lotions, shampoos everything you come in contact with?

I concur with ravenwoodglass, you should double-check everything.

I truly believed I was OK in the non-food department (I've been gluten free for nearly one year now)....until last week when my husband found that both my shampoo and conditioner had WHEAT in them! I absolutely do not know how I missed it but I did. I'm normally very careful; for example I spent days calling and emailing companies to check every one of my meds (and I take a LOT of meds).

Good luck!

Link to comment
Share on other sites
  • 3 weeks later...
willabec Contributor
willabec
  • Author
Posted

Anyone out there....with regard to my previous post and "problem"- i never had the ct scan b/c my symptoms got better, better stools, ache or burning sensation in belly was better. this all got a little better before taking lactaid (just wanted to see if it would help) and a fiber supplement to help bind stool. however, now it seems like my problems is coming back....any suggestions/thoughts as to what it might be? i have a somewhat constant "ache" in the lower left abdominal area that sometimes goes to the lower left of my back, the loose stool seems to be back, although the frequency of how often i go has gotten better as well. i am going to my PCP for my annual check up on friday. will be having routine bloodwork- GI dr. said to have a standard celiac serology done...any other tests you think? food allergy blood test? i am very concerned that it is colon cancer. i know the internet can be good but it can also be bad- but almost all the symptoms for colon cancer is what i have. help= anyone??

Link to comment
Share on other sites
Wolicki Enthusiast
Wolicki
Posted

Ask your doc to check your gallbladder. Also, couldn't hurt to have your"baseline" colonoscopy. I had my first at forty because my dad had colon cancer. I think it's good for anyone over 40 to have one.

Link to comment
Share on other sites
willabec Contributor
willabec
  • Author
Posted
Ask your doc to check your gallbladder. Also, couldn't hurt to have your"baseline" colonoscopy. I had my first at forty because my dad had colon cancer. I think it's good for anyone over 40 to have one.

thanks for your advice...what is involved with checking the gallbladder? i had read that gallbladder problems/pain were felt more in the upper portion of the "stomach/belly region". mine is lower left. so of course when i typed in lower left abdomen pain, etc. it came up with colitis, which of course it could be, it could be alot of things. i am getting stressed over this whic of course doees not help either! i will have whatever blood work on friday and then go from there i guess. thanks again!

Link to comment
Share on other sites

Archived

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

Go to topic listing

  • 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. plumbago
      - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed...
    2. trents
      - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    3. Suzi374
      - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it.
    4. Suzi374
      - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be...
    5. Peace lily
      - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748
    Suzi374
    Newest Member
    Suzi374
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • plumbago
      Lots of tests

      By plumbago · Posted

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Lots of tests

      By trents · Posted

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...