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 Our Content
    eNewsletter
    Donate

Not Feeling Right For Some Time


doree

Recommended Posts

doree Newbie

Hi all,

I think I have reached people who will understand. I have been suffering from severe constipation, gas and poor sleep for quite some time. For relief I had a colonic where I passed out. The colo rectal surgeon put me on meds that worked for a week. When I went back last week I was grossly constipated and forced to endure a humiliating test where I passed out once again. What is worse is he is hinting at cutting out part of my colon which leads to a whole new arena of problems.

Constipation, muscle aches, osteopenia, terrible sleeper, occasional acid reflux and stomach pains. And then the mysterious "cuts" that appear on my torso. Seems like I should bring it up to the doc before I am sent on another humiliating gastro test this week. Yes? 58, and otherwise healthy, no drugs, alcohol, excercise regularly, eat well and drink plenty of water

:rolleyes:

Thank for any insight!


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Have they tested you for Celiac?

doree Newbie
Have they tested you for Celiac?

no, I feel funy recommending this to the doctor. has not been brought up but my symptoms seem to mimi celiac in my opinion. is it worthwhile to bring up?

ShayFL Enthusiast

Doree, your doctor works for YOU!! You can hire/fire any doctor that is not doing their job. Doctors are just people with specialized training in a particular field (medicine). They are not gods.

Ask for ANYTHING you feel needs to be tested and if they say no or brush you off. Find another doctor.

If you can afford it, you can get your own testing through places like HealthCheckUSA and DirectLabs.

Never let a doctor control your health. YOU owe it to yourself to stand up for yourself. :)

neesee Apprentice

I don't think they would cut out part of your colon because of celiac disease. I have diverticular disease and the are discussing cutting out part of my colon sooner or later. I'll know more next month after the colonoscopy.

Ask your Dr. for the celiac test. It can't hurt.

I have celiac and diverticulitis. The diverticultis if far more painful than the celiac. 20 year ago you couldn't have told me that. the celiac was tearing me up at that point.

I hope you drs come up with some answers and you feel better soon.

neesee

dksart Apprentice

Doree,

I think you were describing many my symptoms before being diagnosed celiac. The gluten-free lifestyle has helped about 90% of my problems. It may seem difficult at first, but three years in it is second nature and I no longer have cravings for any of those nasty gluten filled breads, etc.

Tell your Dr. and no matter what he says, try going Gluten-free.

Good luck.

jerseyangel Proficient

Hi Doree,

Please don't be shy about telling your toctor you would like to be tested for Celiac. Request these tests, which make up the Celiac Panel--

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

It's just a blood test--you don't even have to fast for it but be sure to be eating gluten right up until you are tested--not eating it will skew the results.

The treatment for Celiac is a lot less drastic than surgery--the gluten-free diet :)


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



Celiac.com Sponsor (A8-M):



Fiddle-Faddle Community Regular

I just wanted to add that if your doctor is reluctant to order the tests, or laughs at the idea that you may have celiac, or tries to scare you into immediate surgery without a REALLY convincing explanation of the necessity (like, "we have definitively found cancerous growths which need to be removed, NOT "we need to see what is going on"),

#1 FIRE THE DOCTOR

#2 Eliminate gluten and all dairy from your diet

If you start feeling significantly better within a couple of days, you have your answer--no need for further tests.

Be aware that you may find yourself desperately craving gluteny items like bread. Hang in there--those cravings are a sign that you were addicted, and will lessen over several days, and be gone within a couple of weeks. Eat lots of rice, potatoes, meat, chicken, fish (protein is very filling), fresh fruits and veggies, and save Fritos and chocolate chips (dark) for the times when you have the worst cravings.

Avoid the gluten-free breads and cookies you see at the market--they are tough for gluten-damaged tummies to digest, but you can add them in (or better-tasting home-baked ones :) ) after a month or two when your tummy heals (if celiac is the problem for you).

Welcome aboard, ask lots of questions here, and best of luck!

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. - Jess270 replied to AnnaNZ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      29

      Bitters for digestion?

    2. - cristiana commented on Jefferson Adams's article in Origins of Celiac Disease
      7

      Why Bananas No Longer Cure Celiac Disease

    3. - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

    4. - GeoPeanut replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

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

      Celiac or Addison's complications? Can someone share their experience?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,058
    • Most Online (within 30 mins)
      7,748

    Magali
    Newest Member
    Magali
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jess270
      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
×
×
  • Create New...