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

Advice Please :-)


redheadednut

Recommended Posts

redheadednut Newbie

Helllllllo!

Over the past couple of years, I've had freq stomach aches, diarrhea, 3-5 BM/day, excessive gas, bloating, mouth sores, etc. I usually have a BM right after I eat or sometimes even before I have finished my meal. I finally decided to seek help from a doctor this summer (before my health insurance runs out when I graduate from college this spring!). The doctor at my school referred me to a GI specialist due to my symptoms coupled with unexplained anemia. The blood panel showed "elevated anti sprue AB." As a result of that test, I was scheduled for an endoscopy. The endoscopy and biopsy both came back normal. I won't be able to talk with my GI doctor until my appointment in mid November (I received my endoscopy results in the mail), but I'm pretty sure I'll be stuck with the typical IBS diagnosis.

I am a little torn between what I should do since I have read on here that it is possible that the endoscopy/biopsy may have missed damage. Considering the possible ramifications that can come in the future for someone with celiac disease who doesn't follow a gluten-free, in addition to my current anemia, I am wondering if I should give the gluten-free diet a whirl. Although, I am hesitent to do so before I see my GI doctor again in case she wants to do further tests. I also kind of feel as though I would be giving myself a self-diagnosis/disrepecting her by doing so. AHHHHHHHHHH! I'm just sick of feeling yucky and getting a diagnosis/help is proving to be an incredibly long process! Do any of you have any advice for me?!

Thanks!

A


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast

I would definitely try the diet. Which blood tests were done? Some are very specific. Also, a biopsy can rule celiac in but it can't rule celiac out. If there is sporadic damage they can easily miss it and if it is in beginning stages you may not have damage yet.

AmandaD Community Regular

I would agree with Kaiti and make sure you had the TTG test done...do you know if celiac sprue runs in your family? Another option would be to have the HLA gene test actually done - you could ask your g.i. about this - for instance, we may do this for all three of our kids because then we'll really know whether or not they will develop sprue and whether or not we should be testing them every three years with the ttg test (i'm a biopsy-confirmed celiac myself).

(testing relatives every three years if they're related to a first-degree biopsy confirmed celiac is the newest medical recommendation)

my g.i also mentioned that since my bloodwork was positive, if the endoscopy was normal then we were going to repeat it again in 3 months and that would be the final yay or nay.

just some things to discuss with your doc...amanda

I would definitely try the diet. Which blood tests were done? Some are very specific. Also, a biopsy can rule celiac in but it can't rule celiac out. If there is sporadic damage they can easily miss it and if it is in beginning stages you may not have damage yet.

<{POST_SNAPBACK}>

Nevadan Contributor
Helllllllo!

Do any of you have any advice for me?!

Thanks!

A

<{POST_SNAPBACK}>

Hello A,

Since you have anemia, I would recommend getting a bone density test done to check for osteoporsis. Both are related to gluten sensitivity.

George

Guest BellyTimber

"if the endoscopy was normal then we were going to repeat it again in 3 months and that would be the final yay or nay"

3 months - that surely is too soon to be final

VydorScope Proficient

Odviously talk to your doctor before you take any adivce... not that docs are perfect, but they have your tests, and hisitory, and other data we do not. :)

BUT, if your celiac disease blood test is POSTIVE, then go gluten-free for life and forget futher testing. You have celiac disease. Its fiarly simple. :)

I created a thread a whiel go expliaing how the bisopy is NEVER NEGATIVE. Its only non-postive. Thats a big big difference. Non-postive tells you nothing for sure, while negative would be conclusive. Only a POSTIVE biosopy tells you anything in the case of the celiac disease test.

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. - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    2. - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    3. - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

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

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,438
    • Most Online (within 30 mins)
      7,748

    rednecksurfer
    Newest Member
    rednecksurfer
    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

    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.