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

Looking For Advice

kpyoung24

Recommended Posts

kpyoung24 Rookie
kpyoung24
Posted

hey everyone! here's my dilemma... about 4 years ago i saw a gi doc after years of gi problems and months of trips to the hospital for SEVERE vomiting and d, i was very low in potassium, they got my levels up with an iv and sent me home. the gi did an egd and colonoscopy... i was diagnosed with IBS and duodenitis(which is another word for damaged villi according to my daughters gi), anyway my new doc tested me for celiac given my daughters positive tTG test, he ran a gliadin and ema test, nurse called today and said it was all negative, what now??????

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

Celiac.com Sponsor (A8-M):


dbmamaz Explorer
dbmamaz
Posted

From what i've read around here, the standard response is - try the diet anyways. You dont need a doctor's orders to quit gluten! Go off for 6 weeks, then try going back on and see how you feel. Many of us here did it without testing, and were amazed at how much better we felt. You really dont have much to lose, except a few weeks of eating bread and stuff.

Darn210 Enthusiast
Darn210
Posted

I would try the diet. You have to do all the research, shopping and cooking for your daughter, anyway. I don't want to make light of that . . . that will entail a lot of work in the beginning. However, for you to go gluten-free at the same time won't be that much additional effort.

kpyoung24 Rookie
kpyoung24
Posted
  • Author
I would try the diet. You have to do all the research, shopping and cooking for your daughter, anyway. I don't want to make light of that . . . that will entail a lot of work in the beginning. However, for you to go gluten-free at the same time won't be that much additional effort.

thanks for the advice everyone! is there such a thing as negative blood work and positive biopsy?? i ask because my daughter's gi said that there is no difference between "duodenitis", which i have been diagnosed with, and damaged/blunted villi. any info is appreciated!!!

aikiducky Apprentice
aikiducky
Posted

A negative bloodwork/positive biopsy combination is actually quite common in adults. Your doctor might be willing to diagnose you without a repeat endoscopy?

Pauliina

lightening16 Rookie
lightening16
Posted

Hello

I am not expert but from what I have read on here, there are lots of people that have had similar things happen. The blood test are not perfect. Some sites they are are 92% effective but if you look on the enterolab site they discuss it furthur and it looks like depending on the person then the results can be as 30% accuracy.

I had negative blood test but a positive response to the diet. Did a gluten challenge for 2 weeks and know that I have a problem with gluten. I am supposed to go see a GI but that will take half a year. I am not waiting to go gluten free.

They say that the biopsy is the "gold standard"... not the blood test.

Good luck

cruelshoes Enthusiast
cruelshoes
Posted

If it were me, I would try the diet anyway. It can happen for people to have negative bloodwork and positive biopsy results. Here is a link that may be of interest to you:

Open Original Shared Link

Both the anti-tTG and the EMA titers correlate with the severity of villous atrophy [26-29]. As a result in the presence of partial villous atrophy either antibody may be negative

This means that sometimes if your villi are still in the early stages of damage, your bloodwork may be negative - for now. Negative bloodwork does not mean you don't have celiac disease. Did they take samples during your endoscopy? If so, I would try to get ahold of the pathology report to see what the findings were.

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

Celiac.com Sponsor (A8-M):


kpyoung24 Rookie
kpyoung24
Posted
  • Author

thank you everyone for your very helpful replies!! everyone here is so supportive!! i looked into that link and the research that is sighted there is really interesting, thx for the tip! im going to call my old gi tomorrow and request a copy of my records, hopefully that will help. my current doctor is mailing a copy of my lab results to me as well. hopefully i can put all the pieces together. i just know that I've got ALL the symptoms, including all the yucky gi stuff, the infertility issues, an unexplained rash on both elbows, and the diagnosis of hypothyroidism about 4 years ago. i just want answers so i can start feeling better. with any luck I'll get some, even if i don't i think I'll try the diet anyway. thx again everyone!! im sure you haven't seen the last of me...lol!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,677
    • Most Online (within 30 mins)
      7,748
    shayansh
    Newest Member
    shayansh
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.