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

Biopsy Boardline and Blood work negative

boarderline??

Recommended Posts

boarderline?? Newbie
boarderline??
Posted

Hi I'm new to the forum and need some help please.  I have had RA and Sjorens for over 6 years.  Also anemic and while following that up they did a lower and upper scope and biopsies.  The biopsy came back boarderline for Celiac disease.  Bloos test was done and while waiting for that I started to do alot of research about the disease and seemed from what I read that the blood work would come back positive.  Nope couldn't be that easy the blood work came back negative.  So now I'm not sure which is the most accurate?  I figure I should just follow that diet and see what happens but I have read it could take up to 2 years to see real results and doubt I could do that without an actual answer.   Please help!!

 

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

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

 Are you on any immuno-suppressive drugs for your RA/Sjogren's?  Some of them can interfere with blood testing results.  If not, then it is entirely possible for blood work to be negative and biopsy positive.......that happens to a lot of people.  Neither one is more accurate than the other as damaged villi can be missed on biopsy if damage is patchy.  I am not even sure what borderline means on a biopsy report.  You either have damage or you don't.

Having both RA and especially Sjogren's puts you into the higher risk category for Celiac.  I also have Sjogren's.  Could you post the biopsy results, if you are comfortable with doing that?

 

boarderline?? Newbie
boarderline??
Posted
  • Author

I am on Leflunomode, Nabumetone, hydroxycloroquine and Pilocarpine.  Not sure if any of these would interact with the test or not.  I know I fasted the day before for the scope and hadn't eaten much before I got the blood drawn so not sure if that could mess with it or not.  I don't have any of the reports for the biopsy the doctor just called and said it was boarderline and ordered the blood work.  Feel like I have been left hanging  by them just got a call from a someone in the doctors office (not the Dr) telling me that the result was negative and when I asked if that meant I could have gluetin she responded yes.  Dummy me didn't ask to talk to the Dr

Gemini Experienced
Gemini
Posted

Two of the four drugs listed are immuno-suppressive drugs.  Leflunomode and Plaquenil are the two so there is a strong possibility that either of these 2 (or both) could have affected antibody testing.  If you are testing an antibody level in autoimmune testing (Celiac) and take meds that suppress the immune response, testing results may be useless.  I am not saying for sure that they will but the odds are higher that they might.  Most doctors don't even take this into account, which always boggles my mind.

I think you need a new GI doctor because the one you have is not doing you any good.  You can ask them for the biopsy report and post it here.  You have a right to all medical testing results.  I would not go back to eating gluten unless you want to be re-tested by someone more competent.  Having these 2 diseases, plus anemia, makes the odds of you having Celiac much higher than not.  You could also do gene testing to see if you carry any of the main Celiac genes but that will not tell you if you have it.  It just tells you whether you have the genetic make-up to trip for it.  You do sound like a strong possibility for Celiac, though.

Many people with RA notice much pain improvement when following a gluten-free diet......if you have Celiac.  When I went gluten free after diagnosis, my Sjogren's symptoms improved.  I take no systemic meds for it, although I do use Restasis eye drops for my dry eyes.  Don't get me wrong, Sjogren's still sucks big lemons but things stabilized for me. We'll see what happens as I continue to age......:rolleyes:

frieze Community Regular
frieze
Posted

Gem, check into Vitamin D, into dry eye.

 

Gemini Experienced
Gemini
Posted
14 hours ago, frieze said:

Gem, check into Vitamin D, into dry eye.

 

I take a lot of Vitamin D and my levels are the highest they have ever been.  They have gone from the twenties to 62 so I keep plugging away at that.  I just have a lot of collateral damage from going so long as an undiagnosed Celiac. I also take 2,000 mg per day of omega fish oil and flax seed oil, which is supposed to specifically help with dry eye.  This is all doing wonders for my good cholesterol but my eyes can still be problematic during allergy season.  I am sure if I didn’t do all this things would be much worse but I wish I could bump it up to the next level of better. I’m sure the aging thing isn’t helping matters any........<_<

If there is something I am missing here, please let me know! 

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. Scott Adams
      - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Have Tru Joy Sweets Choco Chews been discontinued??

      Please read the original post--they are looking for a gluten and milk-free treat to replace Tootsie Rolls for their child who loves Tootsie Rolls, but can no longer have them due to a dairy issue--they are not looking for M&M's.
    2. Wheatwacked
      - Wheatwacked replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Have Tru Joy Sweets Choco Chews been discontinued??

      They both do. The peanuts add nutrients to the treat. Tootsie Roll: Sugar, Corn Syrup, Palm Oil, Condensed Skim Milk, Cocoa, Whey, Soy Lecithin, Artificial and Natural Flavors. M&M Peanut: milk chocolate (sugar, chocolate, skim milk, cocoa butter, lactose, milkfat, peanuts, soy lecithin, salt, natural flavor), peanuts, sugar, cornstarch; less...
    3. Scott Adams
      - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Have Tru Joy Sweets Choco Chews been discontinued??

      But M&M's contain milk, and would not be at all like a Tootsie Roll.
    4. Jmartes71
      - Jmartes71 replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

      I appreciate you validating me because medical is an issue and it's not ok at all they they do this. Some days I just want to call the news media and just call out these doctors especially when they are supposed to be specialist Downplaying when gluten-free when they should know gluten-free is false negative. Now dealing with other issues and still crickets...
    5. Wheatwacked
      - Wheatwacked replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Have Tru Joy Sweets Choco Chews been discontinued??

      M&M Peanuts. About the same calories and sugar while M&M Peanuts have fiber, potassium, iron and protein that Tootsie Rolls ("We are currently producing more than 50 million Tootsie Rolls each day.") don't. Click the links to compare nutritional values. Both are made with sugar, not high fructose corn syrup. I use them as a gluten free substitute...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,269
    • Most Online (within 30 mins)
      7,748
    RevBrenda
    Newest Member
    RevBrenda
    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

    • Scott Adams
      Have Tru Joy Sweets Choco Chews been discontinued??

      By Scott Adams · Posted

      Please read the original post--they are looking for a gluten and milk-free treat to replace Tootsie Rolls for their child who loves Tootsie Rolls, but can no longer have them due to a dairy issue--they are not looking for M&M's.
    • Wheatwacked
      Have Tru Joy Sweets Choco Chews been discontinued??

      By Wheatwacked · Posted

      They both do.  The peanuts add nutrients to the treat. Tootsie Roll: Sugar, Corn Syrup, Palm Oil, Condensed Skim Milk, Cocoa, Whey, Soy Lecithin, Artificial and Natural Flavors. M&M Peanut: milk chocolate (sugar, chocolate, skim milk, cocoa butter, lactose, milkfat, peanuts, soy lecithin, salt, natural flavor), peanuts, sugar, cornstarch; less than 1% of: palm oil, corn syrup, dextrin, colors (includes blue 2 lake, blue 1 lake, red 40, yellow 6 lake, yellow 5, yellow 6, blue 1, yelskim milk contains caseinlow 5 lake, blue 2, red 40 lake), carnauba wax, gum acacia. glycemic index of Tootsie Rolls ~83 gycemic index of M&M Peanuts ~33   The composition of non-fat solids of skim milk is: 52.15% lactose, 38.71% protein (31.18% casein, 7.53% whey protein), 1.08% fat, and 8.06% ash.   https://onlinelibrary.wiley.com/doi/10.1002/9781118810279.ch04  Milkfat carries the fat soluble vitamins A, D, E, and K. The solids-not-fat portion [of milk] consists of protein (primarily casein and lactalbumin), carbohydrates (primarily lactose), and minerals (including calcium and phosphorus). https://ansc.umd.edu/sites/ansc.umd.edu/files/files/documents/Extension/Milk-Definitions.pdf
    • Scott Adams
      Have Tru Joy Sweets Choco Chews been discontinued??

      By Scott Adams · Posted

      But M&M's contain milk, and would not be at all like a Tootsie Roll.
    • Jmartes71
      Doctors and Celiac.com

      By Jmartes71 · Posted

      I appreciate you validating me because medical is an issue and it's not ok at all they they do this. Some days I just want to call the news media and just call out these doctors especially when they are supposed to be specialist Downplaying when gluten-free when they should know gluten-free is false negative. Now dealing with other issues and still crickets for disability because I show no signs of celiac BECAUSE IM GLUTENFREE! Actively dealing with sibo and skin issues.Depression is the key because thats all they know, im depressed because medical has caused it because of my celiac and related issues. I should have never ever been employed as a bus driver.After 3 years still healing and ZERO income desperately trying to get better but no careteam for celiac other than stay away frim wheat! Now im having care because my head is affected either ms or meningioma in go in tomorrow again for more scans.I know im slowly dying and im looking like a disability chaser
    • Wheatwacked
      Have Tru Joy Sweets Choco Chews been discontinued??

      By Wheatwacked · Posted

      M&M Peanuts. About the same calories and sugar while M&M Peanuts have fiber, potassium, iron and protein that Tootsie Rolls ("We are currently producing more than 50 million Tootsie Rolls each day.") don't. Click the links to compare nutritional values.  Both are made with sugar, not high fructose corn syrup.  I use them as a gluten free substitute for a peanut butter sandwich.  Try her on grass fed, pasture fed milk. While I get heartburn at night from commercial dairy milk, I do not from 'grassmilk'.     
×
×
  • 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.