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

Bingo


Healthsohard

Recommended Posts

Healthsohard Newbie

It's it's been an interesting year to say the least.

My whole life I suffered symptoms of celiac and I'm just now realizing it might all be because of Celiac Disease.

I remember growing up and having crazy bouts of diarrhea at times, but thought it was a bug going around or just didn't sit right with my tummy. In my late teens/early twenties I started developing a rash. The rash would always be on my neck. I thought it was a heat rash and applied cortisone cream and washed with dove mild soap. The rash would come and go and it eventually started appearing on my arm once a year. The last rash was December 2014, and it appeared on my chest. Again, I chalked it up to heat rash. Washed with mild soap and applied cortisone. I've always had headaches and migraines. The diarrhea was still existing on and off. Other than that I felt ok. I'm a pretty active woman.

When I eat a meal, I get so bloated with a food baby. I look 3-4mths pregnant.

Just after my 32nd birthday in July 2014 I was slipped a drug in a club and overdosed. I was taken to the hospital. Ever since then I have not been the same. Seizures started September 2014. They've progressively have gotten worse. My neurologist thought I was having panic attacks and thought it was all in my head. I was put on clonazepam. After being filmed while seizing my new neuro says they're simple partial seizures. I have tingles in hands and feet a lot too.

Within the past month my diarrhea has gotten more frequent. Every few days I'm rushing to a toilet. Two days ago my diarrhea had blood in it.

I'm tired all the time and just feel drained. I never used to feel this way.

I scheduled an appointment for 8/22 with a gi doctor after a friend with celiac suggested I get tested.

What are your thoughts?

I read celiac disease can be triggered due to trauma.

I was also told not to go gluten-free till I've been confirmed Celiac or intolerant.

What test should I ask my dr about? My friend said biopsy but never mentioned any blood test.


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



Celiac.com Sponsor (A8-M):



Healthsohard Newbie

Also, even though I'm unsure if any family members have celiac, but both my mother and sister had infertility issues. My mom struggled to have kids for 8yrs. My sister had to do ivf treatments. My sister also has crazy mood swings and stomach issues.

user001 Contributor

If you are having such severe problems, I would really suggest getting a sooner appointment with a general practicioner to have the simple blood test for celiac run. That way you can know sooner and stop having horrible symptoms. Your symptoms and the list of symptoms from your family members does sound like it might be celiac. I was able to link celiac to my dads mother who, later in life started avoiding gluten because it made her tired. She also had 2 miscarriages and a few strange illness that never had an explanation.

 

I don't know if the trauma trigger is factual but I have also read some similar information. To sum up what I have learned. It sounded like celiac disease can be in the background your whole life as kind of a nervous stomach but then a bad illness or traumatic event happens and after that a person with celiac starts to have symptoms full force. So not only did you have a nervous tummy, after the event or illness you are sick all the time, have no energy. You are just never the same.

 

I also had 'heat rash' alot as a kid, and a nervous tummy my whole life. Then when I was 16, I was sick for nearly an entire year with sinus infection, after sinus infection. After that year, my energy level was never the same and I just constantly felt sick. Over the past 14 years, I have been sick with many strange illnesses that were never explained to me. Just before I discovered I may have celiac disease, I had gotten so sick I was having anxiety attacks almost daily, I didn't want to leave the house. My balance was so horrible, I walked like a drunk. Then I discovered that I had celiac disease.

 

Like I said, I would try to get in sooner for the simple blood test. I don't know alot about the blood tests, im sure one of the moderators would have that information at hand. That would at least let you know what might be going on. I discontinued gluten before I had any testing done, the doctor didn't think it was safe for me to eat the stuff anymore because my health had declined so much. I was able to have results for blood and biopsy come up positive enough to make a diagnosis after being gluten free for a few months.

Healthsohard Newbie

Thank you user001. It's pretty insane how fast my health has deteriorated since the overdose.

Is there a certain blood panel to request or is it just basic blood work? I'll for sure try to get in with my primary care dr first for blood work. She recently did a basic panel but nothing came back alarming.

user001 Contributor

You wouldn't believe how many 'basic' blood panels I have had, it's not standard to test for celiac disease. Diabetes, thyroid issues and lyme disease seem to be the generic things they test for. I think this is the link about testing. I know there is some good info on the university of chicago's website also.

https://www.celiac.com/articles/1108/1/Celiac-Disease-Screening/Page1.html

Healthsohard Newbie

Thank you very much

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. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    2. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

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

    • Total Members
      132,812
    • Most Online (within 30 mins)
      7,748

    doodlebubbles
    Newest Member
    doodlebubbles
    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

    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
×
×
  • 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.