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. Borky
      - Borky posted a topic in Dermatitis Herpetiformis
      0

      Gluten food test strips

      I just recently saw something on this. Has anyone tried test strips? Which brand is better? Not sure how they really work and if they really do work. Thank you, Nancy (aka Borky)
    2. Wheatwacked
      - Wheatwacked replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      17

      Gluten Issues and Vitamin D

      And more:
    3. Wheatwacked
      - Wheatwacked replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive. The endoscopy and biopsy is looking for damage to your small intestine. I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy...
    4. Scott Adams
      0

      Gluten-Free Diet Burnout: Why It Happens and How to Get Your Motivation Back (+Video)

    5. Midwesteaglesfan
      - Midwesteaglesfan posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

      At 41 years old I have been fighting fatigue and joint pain for a couple months. My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right. Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist. He was extremely thorough and sat with me and m...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,268
    • Most Online (within 30 mins)
      7,748
    Cookie Monster13
    Newest Member
    Cookie Monster13
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Borky
      Gluten food test strips

      By Borky · Posted

      I just recently saw something on this.  Has anyone tried test strips?  Which brand is better?  Not sure how they really work and if they really do work.  Thank you, Nancy (aka Borky)
    • Wheatwacked
      Gluten Issues and Vitamin D

      By Wheatwacked · Posted

      And more:
    • Wheatwacked
      Going for upper endoscopy today

      By Wheatwacked · Posted

      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive.  The endoscopy and biopsy is looking for damage to your small intestine.  I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy results.  The endoscopy has been the Gold Standard diagnostic, and most healthcare providers won't diagnose celiac disease until your intestinal lining Marsh Score reaches stage 3. You don't really want to wait for the damage to get worse, especially since only five days mostly gluten free gave you relief.  Yes, migranes is one of the 200 symptoms that may be caused by Celiac Disease. Malabsorption Syndrome is often comorbid with celiac disease.  The western diet is deficient in many vitamins and minerals.  That's why gluten processed foods are fortified.  Gluten free processed foods are not; Vitamin D deficiency is a virtual given.  40 to 60% of the industrial population is deficient in vitamin D, Damage to the intestinal lining from celiac disease can decrease the number of vitamin D receptors.  So now you get no vitamin D from the sun (skin cancer scare) the major source of vitamin D, plus absorbtion from food is poor because of intestinal damage.   Low iodine intake is getting more of a concern because the major source of iodine used to be bread (dough conditioner with iodine was stopped in the US in the 1970s), dairy (lactose intolerance from eating quick pickles with vinegar instead of fermented pickles which supply lactase excreting lactobacillus to improve Lactose intolerance. Commercial Dairies have wheat, barley and rye added to the cow feed. Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein causing the problem.  And people use less iodized salt.  In the US intake of iodine dropped 50% from 1970 to 1984. Switch to Grass fed only milk and consider supplementing Liquid Iodine drops to your diet.  The omega 6 to omega 3 ratio of commercial milk is 5:1; Organic milk is 3:1 and grass fed milk is 1:1. The typical western diet is around 14:1, optimum for humans is 1:1.  Wheat flour is 22:1 omega 6:3.  Choose vegetables lower in omega 6, it is inflammatory. Eat fermented foods and switch to Grass fed only milk.  Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein.   
    • Midwesteaglesfan
      Going for upper endoscopy today

      By Midwesteaglesfan · Posted

      At 41 years old I have been fighting fatigue and joint pain for a couple months.  My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right.  Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist.  He was extremely thorough and sat with me and my family for a good hour asking questions and listening. He ordered X-rays of all my joints and more bloodwork.  He suspected some sort of reactive inflammatory arthritis.  My TTG (Tissue Transglutaminase) came back at 34. he told me to try going gluten free and out me on Salfasalzin to help the join inflammation.  Over the next couple days going gluten free and doing a lot of research and talking to people with celiacs,  we found that I should have an upper endoscopy for insurance purposes in the future.  I reached back out to my rheumatologist and expressed this concern and he got back to me stating I was correct and resume regular gluten diet and stop the medication until after that scope.     They were able to schedule me in for 2 days later.  I had been gluten free, or as close to it as I could be for about 5 days.  I know I ate some brats with it but wanted to use them up.  My symptoms had gotten slightly better in those 5 days.  I felt less fatigue and joint pain was slightly better(it had gotten really bad) so for these last 2 days I’ve gone crazy with wheat bread, pasta and such.  I’m hoping those 5 days didn’t screw this endoscopy up.  I can’t imagine after a life of gluten, my intestines healed in 5 days and after eating gluten again for these couple days,  my stomach hurts, joint pain is coming back up so I know the inflammation is there.   Hinesight after this diagnosis, I have had chronic migraines since my late teens.  Has that been a lingering symptom of celiacs all these years?  I’ve never really had the stomach issues, for me it came in heavy these last couple months as the fatigue, just always feeling tired and exhausted.  And the joint pain.     So getting in the car for the 2 hour drive to the hospital for this scope now.     Wish me luck!
    • marlene333
      Bee balm lipbalm not gluten free

      By marlene333 · Posted

      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
×
×
  • 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.