Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Anyone Else Doubt That They'd Be Diagnosed?

taynichaf

Recommended Posts

taynichaf Contributor
taynichaf
Posted

I'm just waiting for my test results and I really hope they cone out positive..mainly because it would be proof to the people that called me a hypochondriac! So how did you all feel while waiting for a diagnoses???

And please...PLEASE pray that my test will be positive!..it would change EVERYTHING..

Thank you so much :)

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

Celiac.com Sponsor (A8-M):


Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Ackkk .... you said you would be eating gluten for 6 weeks first! 

How long has been your gluten challenge? How much bread did you eat?

 

 

I did a single tTG test after a month of going back on gluten: negative.

 

Then it was 5 months of eating from 2 up to 10 slices as I got closer to the planned test date in April.

 

And I was exactly in your shoes, waiting and hoping to have a positive test result on my panel that would explain my fibromyalgia and childhood-teen heath problems.

Then I got the negative results and I was quite disappointed.

 

Monday I went and did the old style AGA blood test in case it can help detect gluten sensitivity.

 

I'm starting to accept that maybe I don't have Celiac eventhough I was better when I first went gluten free.

Another test I did in January said I was wheat intolerant.

There are several proteins in the wheat so maybe another is affecting me.

 

I don't know if I should pray for you to have Celiac.

I too wanted that diagnosis as I don't want to be taking pills for whatever I have as I believe the answer is in nutrition.

I will pray that you have the correct diagnosis to your medical issues.

What ever it is,  I think eating the right foods for you is the right way to go.

 

 

I'm seeing the gastroenterologist tomorrow morning.

I've been waiting months to see him.

I have alot of notes and questions so I hope he's the patient type.

I hope he will agree to do an endoscopy at a future time.

 

So pray for me please. Tell God the prayer is from taynichaf, and I'll tell Him it's for me so it goes to the right place.

And I'll pray for your correct diagnosis.

 

 

PS: it's better to be a hypochondriac now to find out what's wrong  then all your life wondering what is wrong.

taynichaf Contributor
taynichaf
Posted
  • Author

I'm still doing the challenge! It's just, when I went to the doc she asked if I wanted to be tested now or if I wanted to wait..and I couldn't resist ha,I want to know ASAP! Ha.

Ah! I feel so bad that you've been eating gluten for so long :( I reaally hope that you can get an endoscopy to see what's going on!

I'll pray that all goes well for you! And I hope I have celiac..it sounds bad but I just want a diagnosis...

<3

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. CC90
      - CC90 replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Coeliac or not coeliac

      Hi Cristiana Yes I've had the biopsy results showing normal villi and intestinal mucosa. The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.
    2. Wheatwacked
      - Wheatwacked replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Coeliac or not coeliac

      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives. An elevated level means your immune system is reacting to gluten. Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis o...
    3. Wheatwacked
      - Wheatwacked commented on Scott Adams's article in Origins of Celiac Disease
      19

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

      In Addison’s disease, autoimmmune adrenal cortex disease adrenal glands don't make enough cortisol. At 12, it is usually caused by an autoimmune attack. It has a strong genetic link to the HLA-DQ8 gene. After 12 gluten free and 14 years on prednisone for adrenal insufficiency (symptoms like you describe from 1984 until 2014) I recently removed all c...
    4. trents
      - trents replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Coeliac or not coeliac

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    5. cristiana
      - cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Coeliac or not coeliac

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal. My TTG score was completely through the roof at the time, greater than 100 which was then the cut...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,187
    • Most Online (within 30 mins)
      10,442
    Dennis E. Schertz
    Newest Member
    Dennis E. Schertz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Coeliac or not coeliac

      By Wheatwacked · Posted

      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Coeliac or not coeliac

      By trents · Posted

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
    • trents
      Coeliac or not coeliac

      By trents · Posted

      My bad. I should have reread your first post as for some reason I was thinking your TTG was within normal range. While we are talking about celiac antibody blood work, you might not realize that there is not yet an industry standard rating scale in use for those blood tests so just having a raw number with out the reference scale can be less than helpful, especially when the test results are marginal. But a result of 87.4 is probably out of the normal range and into the positive range for any lab's scale. But back to the question of why your endoscopy/biopsy didn't show damage despite significantly positive TTG. Because they took the trouble to take seven samples, it is not likely they missed damage because of it being patchy. The other possibility is that there hasn't been time for the damage to show up. How long have you been experiencing the symptoms you describe in your first post? Having said all that, there are other medical conditions that can cause elevated TTG-IGA values and sometimes they are transient issues. I think it would be wise to ask for another TTG-IGA before the repeat endoscopy to see if it is still high.  Knitty kitty's suggestion of getting genetic testing done is also something to think about. About 35% of the general population will have one or both genes that are markers for the potential to develop active celiac disease but only about 1% of the population actually develop celiac disease. So, having a celiac potential gene cannot be used to definitively diagnose celiac disease but it can be realistically used to rule it out if you don't have either of the genes. If your symptoms persist, and all testing is complete and the follow-up endoscopy/biopsy still shows no damage, you should consider trialing a gluten free diet for a few months to see if symptoms improve. If not celiac disease, you could have NCGS (Non Celiac Gluten Sensitivity). 
×
×
  • Create New...