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

Is it Celiac?


MikeMacKay

Recommended Posts

MikeMacKay Apprentice

Hello, 

I am new here.  I've had a lot of anxiety about a celiac diagnosis over the last year or so.  I've run various tests, such as an endoscopy which has come back negative, and a couple of blood tests where one was supposedly a "weak/faint positive" and the other one I did at the same time as the endoscopy came back "negative".   I've bene having some symptoms I think may be related, but I want to hear from the community. I have a bad rash on my arms currently,, and chronic eczema which started when I was a kid, a red rash on my neck, feelings of being jittery or anxious at times, and I've had difficulty passing my BMs a lot this week (sorry for the TMI) where I believe they have looked green in colour and have been, largely, loose this week, I believe (although I'm not too sure what quantifies loose exactly..).  I've been told by my primary physician and my gastroentrologist countless times that it's not celiac, and may be Irritable Bowel Syndrome (IBS).  I've also been taking drugs to soothe acid reflux in my stomach.  The name of the drug I'm taking is Tecta which is used for stomach acid. Since that wasn't really helping, my gastroentrologist has also asked me to work more fibre into my diet, and take milk of magnesia every night.  My diet, I'd say isn't the best, either.  It comprises of a lot of sugar, and carbs, I think, so this could be a reason.  But I'm not too sure.  I've been looking for more answers though, and I'm hoping someone in this community might know something about it, and whether they've experienced similar things, and if this does in fact sound like Celiac disease to you.  Any answers would be greatly appreciated.  Thank you. 

 

 

 

 

 


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master
1 hour ago, MikeMacKay said:

Hello, 

I am new here.  I've had a lot of anxiety about a celiac diagnosis over the last year or so.  I've run various tests, such as an endoscopy which has come back negative, and a couple of blood tests where one was supposedly a "weak/faint positive" and the other one I did at the same time as the endoscopy came back "negative".   I've bene having some symptoms I think may be related, but I want to hear from the community. I have a bad rash on my arms currently,, and chronic eczema which started when I was a kid, a red rash on my neck, feelings of being jittery or anxious at times, and I've had difficulty passing my BMs a lot this week (sorry for the TMI) where I believe they have looked green in colour and have been, largely, loose this week, I believe (although I'm not too sure what quantifies loose exactly..).  I've been told by my primary physician and my gastroentrologist countless times that it's not celiac, and may be Irritable Bowel Syndrome (IBS).  I've also been taking drugs to soothe acid reflux in my stomach.  The name of the drug I'm taking is Tecta which is used for stomach acid. Since that wasn't really helping, my gastroentrologist has also asked me to work more fibre into my diet, and take milk of magnesia every night.  My diet, I'd say isn't the best, either.  It comprises of a lot of sugar, and carbs, I think, so this could be a reason.  But I'm not too sure.  I've been looking for more answers though, and I'm hoping someone in this community might know something about it, and whether they've experienced similar things, and if this does in fact sound like Celiac disease to you.  Any answers would be greatly appreciated.  Thank you. 

 

 

 

 

 

This "Rash" it could be DH, celiacs with DH can have less damage in the intestines, and the blood test is not always accurate. Please look into the testing for the DH. If all else fails you could be Non Celiac Gluten Sensitivity, which is diagnosed via a elimination diet.
 Open Original Shared Link
Celiacs commonly have issues with magnesium that leads to constipation in some cases, anxiety, and nerve issues. Easing with with supplementing Natural Vitality Calm will help starting at a 1-2 grams or 1/4 tsp and slowly raising the dose each day til you reach the full dose or loose stools dosing to tolerance will help.
B-vitamins can also leady to anxiety, brain fog, and other issues, a spectrum b-vitamin will help I use Stress & Energy and Neurological Support from liquid Health 1tbsp each 3 times a day to help. Might also want to get your vitamin D and iron checked along with other nutrients.

Ease off on the sugar and carbs if you can, and try changing to more paleo diet with more meats, and veggies, slow cooker/crockpot meals, sheet pan meals, etc are simple and quick and can be done cheap, soups and stews can work also look some up. High sugar/carb diets can lead to Small Bacterial Overgrowth, or candida overgrowth. These can cause all kind of health issues and leave you bloated, uncomfortable, tired and ALWAYS craving sweets and carbs like a mad man and they live off it. There are test for these to, and the treatment for them is a almost zero carb diet to starve them and a regime to kill them off and repopulate your gut with healthy flora.

For now keep a food diary, record what you eat and symptoms and bowl habits and rotate you diet see if you find culprits and patterns. If you intend to further test keep eating gluten as all testing requires you to be eating it when checking for celiac. Open Original Shared Link

Celiacmomrd Newbie

Make sure you weren’t eating gluten free before endoscopy.  That can give you a false negative. 

MikeMacKay Apprentice

I was eating gluten before the endoscopy, yea.  However, it still came back negative, at the time.  

@Ennis_TX Thanks for the advice about the food diary.  I will start doing that as well as watching my diet. Do you think it's possible because there might be more damage on the skin because of skin conditions like DH though that endoscopies wouldn't be likely to spot anything at first?  I saw from my doctor's records that he took 4 samples from the intestine, and 4 samples from the stomach. 

 

 

 

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. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    2. - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    3. - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

    4. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    5. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lalan45
    Newest Member
    lalan45
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.