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

Blood Test Positive, Biopsy Negative...what Gives!?


ekdumas19

Recommended Posts

ekdumas19 Apprentice

Hi all

So I have had a long journey with stomach problems begining once I started high school. I went from being diagnosed as lactose intolerant to being diagnosed as a celiac via a blood test once i finished my freshman year of college. The celiac diet worked great for me for a few years-then all of the sudden i started feeling poorly again. I decided to finally see a gastro guy and got a biopsy. He was shocked that I had been on a gluten free diet for 5 years and it was never confirmed with a biopsy. But the biopsy came out negative or as the nurse and not the doctor informed me "there was no sign of sprue". I guess my question is, because I wasnt eating any gluten at the time-could that be the reason the biopsy showed no sprue? Even though the doctor said i did not have celiac disease i continue to eat gluten free, though I continue to feel sort of off and on badly, and have now taken dairy out of my diet in hopes that will give me some relief. Has anyone had a biopsy? Were you still eating gluten at the time when you had it done?


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



Celiac.com Sponsor (A8-M):



VydorScope Proficient

First of, even the ppl that still believe in the bisopy would tell you that after FIVE YEARS of gluten-free there is no way it could be postive.

Your blood work is postive, you have celiac disease. As for stilll feeling bad, what has changed recently in your diet? Go back over everything and make sure some gluten is not sneaking in some place.

PreOptMegs Explorer

My biopsy was negative as well, but my blood tests were positive. Basically, I showed so much improvement on the gluten free diet, that it was obvious what the problem was. Also, if you had been on a gluten free diet for so long and then had the biopsy.... some healing of the intestines definately could have occured. Basically, stick to the diet that makes you feel the best. good luck

Lymetoo Contributor

Read this!

Open Original Shared Link

Interestingly, written by a celiac veterinarian. He says soy, casein [in milk], and others are all bad for us.

I'm new, but it sounds like you're indeed a celiac and I agree about the negative biopsy. A negative biopsy caused me to not be dxd for 30 yrs!!!! No telling how much damage has been done to my body because of it!!

Stay with your diet and do some reading here....maybe you'll find what it is that is making you ill.

Lymetoo Contributor

up

mle-ii Explorer
Read this!

Open Original Shared Link

Interestingly, written by a celiac veterinarian. He says soy, casein [in milk], and others are all bad for us.

I'm new, but it sounds like you're indeed a celiac and I agree about the negative biopsy. A negative biopsy caused me to not be dxd for 30 yrs!!!! No telling how much damage has been done to my body because of it!!

Stay with your diet and do some reading here....maybe you'll find what it is that is making you ill.

Very interesting reading eh? :) I read the entire site and was pretty amazed.

In fact that site is the older one, here's the newer site:

Open Original Shared Link

Sorr, back on topic, ekdumas19, the gut most likely healed in that amount of time. I'm guessing that something recently changed to give you new problems.

ekdumas19 Apprentice
Very interesting reading eh? :) I read the entire site and was pretty amazed.

In fact that site is the older one, here's the newer site:

Open Original Shared Link

Sorr, back on topic, ekdumas19, the gut most likely healed in that amount of time. I'm guessing that something recently changed to give you new problems.

Maybe I do have another allergy on top of this one-and yes that site was certainly an eye-opener. I recently got off dairy and felt quite a bit better-but i would hate to lose corn and soy-as they seem to be all that's left in this world i can put into my mouth.


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



Celiac.com Sponsor (A8-M):



oceangirl Collaborator
Maybe I do have another allergy on top of this one-and yes that site was certainly an eye-opener. I recently got off dairy and felt quite a bit better-but i would hate to lose corn and soy-as they seem to be all that's left in this world i can put into my mouth.

I had positive bloodwork with a negative biopsy as well. I had been gluten-free for almost 5 months pre biopsy. NOTHING had helped me with multitudinous symptoms, some which made me think my insides were dying, until I cut out ALL gluten. Still having ups and downs but much better overall. Also still finding hidden gluten! I also am at least temporarily off of dairy, corn and soy. Very best of luck to you. There's a lot they don't know about grains and gluten!

lisa

Kassie Apprentice

my biopsy was negative too, but blood work was positive. like everyone said if you have been gluten free for five years its not goin to show that u have celiac. my doctor also said that i could have had damage and other stuff that would of made my biopsy positive but probably lower down where they couldn't get to or see

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748

    dcarter1682
    Newest Member
    dcarter1682
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.