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
sahmom4cj
Posted

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
GFreeMO
Posted

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
Hornet
Posted

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
robertwilburn35
Posted

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
nvsmom
Posted

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.

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease. It will not show if you have active Celiac disease. Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies. The...
    2. trents
      - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases...
    3. McKinleyWY
      - McKinleyWY posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast. All my life I have avoided bread and most products containing enriched flour as they contain yeast (when making the man made vitamins to add back in to the flour). Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat...
    4. trents
      - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you...
    5. Peace lily
      - Peace lily replied to AristotlesCat's topic in Super Sensitive People
      118

      Gluten Free Coffee

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,238
    • Most Online (within 30 mins)
      7,748
    tcpb
    Newest Member
    tcpb
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • 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.