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

Help! Is It Celiacs? Onset Of Symptoms After Emotional Experience.


blahh

Recommended Posts

blahh Newbie

Waiting on unlikely diagnosis and symptoms are ruining my life.

Occasional constipation

Occasional nausea

Stomach cramps

Upset stomach

Bad gas (smelly and usually at night)

BLOATING (gets worse as the day progresses)

Occasional Reflux/Indigestion (discomfort under chest bone)

Anxiety attacks (sweaty, trouble breathing)

Trouble catching my breath often (no specific cause


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



Celiac.com Sponsor (A8-M):



missy'smom Collaborator

Your symptoms sound consistant with celiac disease. It can be triggered or activated by emotional trauma. I suspect that's what happened with one of my family members. Are you in the process of being tested?

loco-ladi Contributor

I would get tested if you aren't already in the process of that, many of your symptoms could be related but could also be something else but not being a dr I could guess what they would be.

Lisa Mentor

Welcome,

Yes many of your symptoms are those of Celiac. My Celiac was triggered by stress. The worst of my symptoms occurred in one day.

I noticed that you said you were "wheat free", perhaps if you were "gluten free" your symptoms may improve. But then, if you choose to be tested, as said, you must consume a gluten diet.

Your "wheat" intolerance may have been triggered by your stress into Celiac.

MyMississippi Enthusiast

A lot of your symptoms (but not all ) could be related to high anxiety and stress. Have you seen a gastroenterologist for your gut issues?

blahh Newbie

I just got the blood tests back that confirm it is not celiacs and the internist believes the symptoms are from stress and anxiety. I am in A more relaxed setting now and feeling better but the only things that still bother me the most are the tiredness during the day, low energy, bloating and discomfort in the stomach and gas.

What could the gastro test for or find?

debmidge Rising Star
Waiting on unlikely diagnosis and symptoms are ruining my life.

Occasional constipation

Occasional nausea

Stomach cramps

Upset stomach

Bad gas (smelly and usually at night)

BLOATING (gets worse as the day progresses)

Occasional Reflux/Indigestion (discomfort under chest bone)

Anxiety attacks (sweaty, trouble breathing)

Trouble catching my breath often (no specific cause


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



Celiac.com Sponsor (A8-M):



CMCM Rising Star

My own experience with blood tests is that 1) many if not most doctors may not know exactly which tests to order--in my case an incomplete set of tests was ordered, and 2) a lab may not be familiar enough with what to look for and 3) your condition may not yet be severe enough to produce antibodies in the blood.

I was very sick yet for me a blood test was negative, probably because while I had minimized eating gluten (not deliberately, just sort of unconsciously because I knew it bothered me) for years, I guess this could account for why it didn't show up in blood tests. Yet I was sick.

I learned that depending entirely on doctors and traditional approaches to testing was useless. The general medical ignorance about celiac disease in this country is truly astounding. Plus I had the experience of my mother, who nearly died from malabsorption after a long string of doctors couldn't figure out what was wrong with her and all of whom told her it was an emotional problem. Thankfully, she finally encountered a doctor who was familiar with celiac disease, and he literally saved her life. At the time of diagnosis she weighed 85 pounds and was in very sad shape.

My suggestion is to become VERY proactive....get a bunch of books and read them front to back so you understand what you are up against. If you can't locate a knowledgeable doctor (yes, interview doctors to find out what they know....if you've done a moderate amount of reading, you really can determine whether or not a doctor knows about celiac disease. I had one doctor tell me that I knew more than he did about it!!!!). If you can't find a good doctor to guide you, perhaps consider alternative testing such as Enterolab.....it won't diagnose you, but you can learn a lot about what is going on in your body.

Through reading you will also come to understand that even if you don't have the thus-far identified celiac genes (and there may be some genes which are as yet unidentified!!), you can still be gluten sensitive, which is not to be dismissed. If you are "only" gluten sensitive, you can have most of the same symptoms as celiac disease, and you can get just as sick. The only difference may be that you don't get the villi damage. But you can still get very very sick, and damage in your body can occur. Gluten sensitivity is emphatically not a big nothing as some doctors may imply.

We have a tendency to think doctors must know everything about everything. Not true. Celiac disease is studied virtually as a casual mention in medical school, and most doctors don't encounter (or recognize it) in their practices. Therefore, they don't really know about it, and worse, are never looking for it since they are unfamiliar with how it manifests itself.

blahh Newbie

Wow! Thank you all so much for your great responses!!

I will definitely do a hormone check and am making an appointment and a alternative medicine center.

I do have copies of my blood work and the AGA IgG and the IgA are both negative...So I think that rules out celiacs? I'm not sure how it works.

I dont really want to believe that this is all stemming from an emotional problem/stress as the gastro suggested as i really belive there is something wrong with me....so i am adamant at finding the root of the problem.

GlutenWrangler Contributor

Keep in mind that a negative blood test means nothing. You still could have celiac disease, especially considering that you are intolerant to wheat. Make sure you are tested by a doctor who fully understands celiac disease testing. Good luck,

-Brian

happygirl Collaborator

Your doctor didn't run the full Celiac panel, which includes more specific/sensitive tests than were run. The complete panel that should be done includes:

AGA IgA

AGA IgG

EMA IgA

tTG IgA

Total IgA.

However, because you are on a wheat free diet, your results may skew to a false negative. The blood tests measure your body's response to gliadin. If you take out a huge chunk of gliadin (i.e., wheat), it may be harder to test positive for it if you actually have it.

CMCM Rising Star

I had a couple of blood tests over the years, both negative. Despite that, I still had symptoms. You DO NOT have to have celiac disease to have symptoms.

When I had the Enterolab stool tests and gene test, they showed elevated antibodies, so reactions definitely were going on. I emailed Dr. Fine @ Enterolab, and he said one possibility was that I was having reactions, but perhaps not enough villi damage had yet occurred to allow antibodies into my blood stream. This is why the blood tests were negative. I have since that time read that intestinal damage must be quite severe for it to be shown in the blood.

The assumption that you must let things get that bad to get a diagnosis is really bad. A huge amount of damage can occur prior to it showing up in a blood test. This is the part that doctors apparently don't all realize yet. Dr. Fine feels quite strongly about it, though....if you have the gene, if your stool tests show antibodies, you must stop eating gluten even though the traditional (45+ year old method) blood test doesn't yet show anything.

I read about a case where celiac disease was diagnosed when a person was being treated for stomach cancer (higher rate of this among celiacs).

The blood test is woefully inadequate for early detection, so keep that in mind. It's inadequate, the idea is outdated, and most doctors don't understand this.

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
      132,806
    • Most Online (within 30 mins)
      7,748

    IleneG
    Newest Member
    IleneG
    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.