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

Low Biopsy Rates Contribute to Celiac Disease Underdiagnosis - Newswise (press release)


Scott Adams

Recommended Posts

Scott Adams Grand Master

Open Original Shared Link

Newswise (press release)

Under-performance of small bowel biopsy during endoscopy may explain the underdiagnosis of celiac disease in the United States, according to a new study published online in Gastrointestinal Endoscopy. Investigators at the Celiac Disease Center at ...

Open Original Shared Link Medical Xpress

Open Original Shared Link

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

Sure kept me from being diagnosed. <_<

My doctor failed to biopsy me when he did an endoscopy back in April 2009 and declared me "anorexic" with some "gut irritation" and prescribed Ensure and 3 other meds for a severely burning gut. None of that helped at all. (anorexia? huh? I had been overweight for years!)

Finally DXed 21 months later, after I had become severely ill and had desperately researched everything about celiac disease, I obtained copies of that endo report and saw : NOPE, no biopsy was done. (If had known back then what I know now, of course, I would have pressed for the biopsy.)

In January 2010, When I asked AGAIN if it could be celiac, the NP snarked at me "you don't have SPRUE!!".... he "went down there" last year. (yes, but he did not biopsy me, you idiot)

It did not matter that my weight had plummeted 90+ lbs., I was losing my hair and muscle mass and had B-12, Folate and iron deficiency anemia and D or the other 60 or so symptoms.

I was going to die and this "highly regarded" GI doctor did not seem to notice.

When I sent a letter to his office telling him and his NP that it WAS celiac after all and the chronic "IBS" and "GERD" they had been "treating " for 12 years was GONE and they were totally WRONG about my DX and left me ill for so long, I received no reply.

Then again, I did not expect one.

Two other people I know who had this doctor remained UnDXed as well--for years. I sent them to my new GI.

Are they celiacs too? Yep. You betcha.

squirmingitch Veteran

I love that they pointed this out!

"Biopsy rates were also lower among older patients, African-Americans, and Hispanics. Dr. Green added,

IrishHeart Veteran

and not just a stereotype of a young Caucasian--but he should have added:

It is still considered a "rare childhood disease"

That's the rap I was given repeatedly. It's what most docs still believe.

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. - Haugeabs replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - trents replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    3. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    4. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

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

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748

    Donna Shields
    Newest Member
    Donna Shields
    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

    • Haugeabs
      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil.  Gluten free but not certified gluten free. Soy free, GMO free.   
    • trents
      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even though celiac disease and gluten sensitivity are, technically speaking, not allergic responses, it would seem, nonetheless, appropriate to include "gluten" in that list for the present purpose. That would insure that food companies would be consistent with including this information in labeling. Best estimates are that 1% of the general population, many undiagnosed of course, have celiac disease and more than that are gluten sensitive."
    • Wheatwacked
    • Wheatwacked
      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
×
×
  • 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.