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.

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

    • Total Members
      133,194
    • Most Online (within 30 mins)
      7,748

    Eliana123
    Newest Member
    Eliana123
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.