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

Can Anyone Help With Diagnosis?


sahmom4cj

Recommended Posts

sahmom4cj Newbie

Hey I'm 30 and for the past 2 1/2 years have been having a lot of symptoms. Long story short....I did some research and it sounded like celiac. So I went to the dr asking if he could test for it and he told me it wasn't that but did the celiac panel along with a bunch of other invasive tests. Celiac panel came back and one of my numbers (she said ttg something) is 100, while anything under 10 is normal. He ordered MORE blood work, nothing related to celiac and wants a colonoscopy and endoscopy.

I feel like I'm being violated for unnecessary reasons. Is it wrong if I just go with the blood work and do the diet and if that solves my symptoms then I'm good? Do I REALLY HAVE to have the stomach biopsy if my number on the blood work was so high? Colonoscopy....really?

THANK YOU for any advice you may have,

Christina


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



Celiac.com Sponsor (A8-M):



GFreeMO Proficient

It is NOT wrong. It is YOUR body. You don't need a doctor to tell you what to eat or not eat.

Hornet Rookie

I tend to have a more conservative approach. It's not a question of being wrong. It's a question of asking the MD why you need these tests, what will doing them tell you that is new or different and how they might change the outcome rather than just going on the diet. This is not a dx to fool around with. I am not a fan of any invasive tests, so I want reasons why they are medically necessary.

Just my 2 cents. I am at the beginning of figuring out my issues, but I will see a celiac specialist and listen to what they have to say before I decide how to proceed to help myself. Take deep breaths and try to lower your stress whenever you feel overwhelmed. Good luck.

robertwilburn35 Newbie

I agree that you should ask those why questions and will the test make a difference in treatment. Is the Dr concerened about results for some other reason than ciliac? I think to know the who,what, when why and where is prudent prior to deciding not to go through with the test. However I also agree that its your body your choice so if you dont like the answers or feel more comfortable with diet and waiting then if you have been informed its a good choice. Just make sure you are informed and ask the questions. by you stating that the dr said something about an ttg somthing is 100 says to me that you need to do a little more research and get more info.

nvsmom Community Regular

Celiac panel came back and one of my numbers (she said ttg something) is 100, while anything under 10 is normal. He ordered MORE blood work, nothing related to celiac and wants a colonoscopy and endoscopy.

IgA tTg is is what causes a cliac's body to attack itself when it is exposed to gluen; it's pretty specific to celiac. About 95% specific I believe, which means that out of 100 positive tTg test, about 95 would be celiac and the rest would be something else.

EMA is another test and it is virtually 100% specific to celiac... Did they test that too? I ask because I had a positive ttg and EMA so I don't feel the need for biopsy since the two blood tests which indicate intestinal damage came back positive. I'm willing to change my diet based on that. Is your doctor worried you won't adopt the diet based on those results?

Like the others said, I would talk with your doctor more. And best wishes to you. I hope you get answers and feel better soon.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,733
    • Most Online (within 30 mins)
      7,748

    Debydear
    Newest Member
    Debydear
    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

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.