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

Why Did You?


morgan.s

Recommended Posts

morgan.s Newbie

Why did you or some one you know decide to be tested? What was your experience and why chose what you did?


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Have you been reading some of the recents posts on this forum? You can see lots of peoples experiences by reading along. :)

angie g Newbie

Why did you or some one you know decide to be tested? What was your experience and why chose what you did

I am a 35 year old female. All of my life I have had health issues and have been either misdiagnosed or put off as an hypochondriac. Now, putting it all together..it has been Celiac. As a child I had a bright white spot on the front of my permanent tooth and have always been lactose intolerant. Dentist always said that it was either damage done to permanent tooth before it broke threw the gum or a calcium deposit spot. When I was 30, I had it filed down and a crown put on. As a kid I was lactose intolerant, had frequent headaches, severe fatigue, was diagnosed with anorexia, depression and anxiety. I was unable to cope in high school. I dropped out of school in the 10th grade but at age 20, I tested and passed my GED. I have always battled IBS, Diverticulittis. I had an episode that the Dr.s called-"Temporary Paralysis" threw out my entire body and was as if my body just "locked up"..they never found the cause of it and it stopped as fast as it started.In my 20's I was tested via endoscope and colonoscopy and they found nothing. Also, in my 20's my thyroid went crazy, diagnosed with hypothyroid- Graves Disease. I had the radio-active iodine treatment on my thyroid. I have under gone multiple surgeries and have gotten worse after each surgery. Both knees scoped, 2 scopes on right shoulder, carpal tunnel, sinus surgeries.I have osteoarthritis, Systemic Lupus. My thumb nails are growing weird with deep horizontal ridges. Dermatologist said it was caused by the tendon in my thumb putting pressure on the base of the nail bed. The pain threw out my body is indescribable sometimes. My stomach is at the worst. Nausea, bloating, gas, pain, burning, cramping. I am having the "Charlie horse cramps" in weird mussels. Instead of it being in the calf, they are in the inner thigh and near the knees. I am always short of breath, get dizzy and light headed when standing. Complete body pain that comes and goes. My vision has worsened. At night if there are no lights on in the house, i have to crawl. I "loss the ground beneath me" have no depth perception. I have lost 30lbs in 2 mos. and now the Dr.s seem to becoming concerned. I also have had my lymph nodes- for years now- in my neck and armpits that will enlarge. The lympnodes in my armptis are constantly hurting and sometimes itch. Now that I have finally found a GI dr who is thorough enough, he ordered some test. I just had the endoscope last week and they found "A loss of Duodenal Folds". Dr also took alot of blood work. After looking back at some of my past blood work, I see the pattern of low ALBUMIN, that was always passed over. Now there is a chance that its the Adult Untreated Celiac-can cause intestinal cancer, lymphnoma. My teeth have been breaking off and falling out for years now and I have constant pain in my mouth. A lifetime of signs and symptoms may come to be diagnosed as CELIAC..I am now on disability and unable to work. If this was caught when I was a child, or even 10 years ago..I might not be wasting away like I seem to be...I hope this helps others before its to late..get tested...

morgan.s Newbie

Thanks guys and Angie I have been experiencing.similar things except lately I have been passing blood like diarrhea and the 3 drs and 2 specialts don't know what's going on I'm glad its not cron or anything I was just wondering if every one else was the same before I start the diet Monday...

kareng Grand Master

Thanks guys and Angie I have been experiencing.similar things except lately I have been passing blood like diarrhea and the 3 drs and 2 specialts don't know what's going on I'm glad its not cron or anything I was just wondering if every one else was the same before I start the diet Monday...

Have you been tested for Celiac? If you are planning to do that, you need to continue eating gluten.

morgan.s Newbie

Ya I have been but no test has shown anything other then besides blood, pain and moodswings I am fit and healthy

mommida Enthusiast

Was it ever determined where the blood was coming from? What color was the blood when you passed it?

My daughter vommitted blood from having Eosinophilic Esophagitus. A person can have eosinophils in any part of the GI tract. Do you have scoping/test results?

Angie start drinking some smart water with potassium added vitamin and minerals and start taking Liquid vitamin B12 supplements. It can help with those charlie horses.


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



Celiac.com Sponsor (A8-M):



beachbirdie Contributor

Ya I have been but no test has shown anything other then besides blood, pain and moodswings I am fit and healthy

What tests did they do?

If they didn't do enough tests, they might have missed something. Some docs only test one or two things and then they stop.

The other thing is, you might be non-celiac gluten sensitive. You will react badly to gluten, but not necessarily produce antibodies or get intestinal damage.

morgan.s Newbie

Endoscopy, colonoscopy stool samples and 4 bloodtests and it ranged from dark to bright red

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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      30

      My journey is it gluten or fiber?

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

      Disaccharide deficient, confusing biopsy results, no blood test

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

      Disaccharide deficient, confusing biopsy results, no blood test

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

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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

    • Total Members
      132,815
    • Most Online (within 30 mins)
      7,748

    JaneD
    Newest Member
    JaneD
    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

    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • 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. 
×
×
  • 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.