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

Waiting


missladyj

Recommended Posts

mushroom Proficient

Pancreatic supplements sound like enzymes to help you digest your food. This is what the pancreas normally produces, but gluten seems to suppress its function and many, many of us on the forum take these to aid our digestive systems until our pancreas resumes its normal function.

Good luck on Monday.

Link to comment
Share on other sites
  • 1 year later...

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



Celiac.com Sponsor (A8-M):



missladyj Newbie

So where we last left our hero she had a lot of blood work done, which showed nothing significant. Fecal fat test (gross) which showed more fat than it was supposed to so the doc said you have a malabsorption disorder. Okay great now what. So then we did a colonoscopy which turned up nothing. An endoscopy which turned up nothing. Then we did the pill cam endoscopy which showed that I have "nonspecific ulcers" in my small bowel. Okay great now what. So then we did a blood test for Kron's disesase as well as Ulcerative Colitis. Negative on that. Official diagnosis: malabsorptive disorder, nonspecific ulcers, and chronic hemmoroids. I was given no course of treatment, just told not to use ib profen because that would aggravate the ulcers and told to come back if I had any other problems.

Considering the doctor had no bedside manner, offered no real reasons or treatment...I haven't been back. I still have some stomach issues some weeks are better than others. Some days I go to the bathroom frequently other days I'm constipated. Every few weeks or so I have what I believe to be a hemmoroid attack. Painful bowel movement, blood on tissue, and the like. Well today. I was brought to tears by the painful bowel movement. It's only getting worse each time I have an attack. I haven't had much luck with topical creams and decided to talk to the pharmacist. Who politely as she could suggested I should see a doctor. The logical side of me knows she's right but the doctor I went to was such an ass%$@# that I don't have a fondness for visiting any doctors. She also suggested that I might have an intolerance to something and that I should look into it...well lady I said my doctor says I don't and that it's impossible to have a false negative. She gave me a look.

I know I need to put my big girl panties on and go. It's not getting better. It's painful. It makes me cry. And dammit it's not normal and topical freaking creams aren't working. I'm going to call my gyno in the morning to see if she has someone she can recommend because I am not going back to the ass%$@# to talk about my painful ass%$@#.

I have no idea if this is celiac but I figured if anyone would understand the frustration of knowing somethings wrong and not being able to figure it out...y'all would.

Link to comment
Share on other sites
ravenwoodglass Mentor

Have you give the diet a good strict try yet?

Link to comment
Share on other sites
EnviroChick Newbie

Sadly, I know how you feel. I posted on here recently about my situation, I didn't go overseas or anything, but I have the same problems!

My GI is useless, I've been tested for Celiacs twice and apparently "I'm fine". Had a sigmoidoscopy and still waiting for biopsy results but those will be negative for sure. I am anemic and I know I have other vitamin/mineral problems but my GP doesn't want to test me for them. Shes great eh!

I just started the gluten-free diet a week ago today, and it's kicking my butt. I'm still sick every day, tired as can be, and everything I eat wants out. So I started with my meds again today just so I can get through work and life!

I don't understand why your doctor put you on Flagyl for parasites, even tthough its obvious you're free of them. It just seems like a pointless thing that causes you suffereing.

I would like to add I've too noticed that my food comes out undigested, which is very weird to see. It has been better since the gluten free though.

With gluten free, when people say you have to eat whole-natural foods, they mean it. I eat rice, baked chicken, rice ceral (gluten free chex) and veggies/fruit. Thats it. No seasoning, nothing. Its extremely tough sincce you don't know for sure if all this pain is worth the trouble of eating gluten free, but when you have no other options and no where to turn for much help, it seems like the only thing left to do.

Hope you appt on monday goes good and hopeuflly the doctor will give you some guidance on what to do, and even if he doesn't, ASK HIM what you should be doing!! He is a doctor and they are educated to treat people, not sit there and ignore them!

Good luck!

Link to comment
Share on other sites
missladyj Newbie

Have you give the diet a good strict try yet?

no I'm stubborn and wanted that positive diagnosis. I am nearly ready to say screw a diagnosis and just do it.

Link to comment
Share on other sites
ravenwoodglass Mentor

no I'm stubborn and wanted that positive diagnosis. I am nearly ready to say screw a diagnosis and just do it.

If you are done with celiac testing there is nothing to lose by doing the diet but the pain.

Link to comment
Share on other sites
Fairy Dancer Contributor

Try the gluten free diet.

I had a blood test taken by a dr recently, although it was by no means as comprehensive as yours lol, and that was normal. The only abnormal blood test I had was a mildly elevated cholesterol but not so elevated that it needs any treatment at this stage (other than maybe a healthier lifestyle lol). I never had any stool samples taken or a biopsy done though. Just the blood test.

All the same I have found that the fatigue, dizziness, gastrointestinal symptoms etc that I went to my dr about have improved some on a gluten free diet anyway (except when I ate some corn the other day lol). My system feels much cleaner in general without the wheat and grains and I have started losing weight again, which is great (as I am overweight) because my body was refusing to play ball and take the weight off prior to the gluten free diet.

It does not hurt to try it. Personally I have put myself on a whole foods diet and avoid both gluten and processed foods in general (except as the occasional treat if its a gluten free one). It works...

Hope you start feeling better soon!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

    2. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

    3. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

    4. - Smith-Ronald replied to Soleihey's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lymph nodes

    5. - Bayb replied to Bayb's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Trying to read my lab results


  • 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

    • Suzi374
      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
      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
      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 .
    • Smith-Ronald
      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    • Bayb
      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
×
×
  • Create New...