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

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
      131,198
    • Most Online (within 30 mins)
      7,748

    Jamie0230
    Newest Member
    Jamie0230
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...