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

Positive Serology Negative Biopsy?

sandyrn0224

Recommended Posts

sandyrn0224 Newbie
sandyrn0224
Posted

Several years ago I was tested for Celiac by blood test which was positive. They followed up with a biopsy which was negative for Celiac but positive for Crohn's. Since then I have had SO many physical problems such as fibromyalgia, rashes that are mostly upper trunk, face and scalp, fatigue with a capital F, interstitial cystitis and some thyroid issues. I saw my doctor for an EGD/colonoscopy followup today and he told me I was again negative for celiac on biopsy done a month ago and said I was one in 500 people who have pos. serology and negative biopsy. My question is DO I possibly have it? I have heard on another message board that because I had a positive serology I have it. Can you even have Crohn's AND Celiac at the same time? I'm a nurse but I'm out of my element with this one. I have an appt with my internist on Feb 4th and was thinking of having him run the blood work again just to be safe but I KNOW he told me I was positive years ago.

HELP!?

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

Celiac.com Sponsor (A8-M):


GlutenWrangler Contributor
GlutenWrangler
Posted

Sandy

If you have positive serology, you have Celiac Disease. The antibody tests are very specific for Celiac Disease. A negative biopsy just means that the villi damage hasn't shown up yet. So trust your doctor when he tells you that you have Celiac Disease. And it is definitely possible to have Celiac Disease and Crohn's Disease. I'm willing to bet that going on a gluten-free diet will have a profound effect on improving your symptoms. But please trust what your doctor is telling you. He definitely knows what he is doing. Good luck,

-Brian

Soonerman Rookie
Soonerman
Posted

What were your blood results?

sandyrn0224 Newbie
sandyrn0224
Posted
  • Author
What were your blood results?

I have no idea. The one and only time I had the blood work done for Celiac was about 5 years ago and he told me it was positive. I believe I have a EGD/Colonoscopy report somewhere that mentions the positive result as well, but the negative biopsy results as well but it doesn't go into detail as to what the blood results were exactly.

I have a very good doctor and I'm just shocked that because of the positive bloodwork I should really be on a gluten free diet! Just to be sure I'm going to get my primary doc to re-run the tests for me on Feb 4th when I see him for a checkup. It seems to me my doctor would have said something to me instead of leaving me all these years to keep on eating normally, especially when he knows all the other medical problems I've had.

I do know not to start the diet til after the blood test is done.

Anyone else out there have positve bloodwork and negative biopsy results and were not told by your doctor that you HAD celiac?

Thanks for the responses...I feel kinda lost!

dbmamaz Explorer
dbmamaz
Posted

I'm kinda new to this too, but this is the way I understand it (and i trust someone to correct me if I'm wrong!). The blood work shows that your body is responding incorrectly to gluten. The biopsy shows that its so bad that your stomach is badly damaged by it.

The medical definition of celiac is that you have to have the gut damage and the blood response. If you only have the blood response, it doesnt fit the standard definition of the disease . . .BUT . . .your body is still reacting badly to gluten and you are likely to have tons of other symptoms (other than the typical D) because of your body's inability to properly handle gluten.

I've had the blood test recently, and told the doctor outright I have no intention of having the biopsy or whatever other invasive tests they use to confirm the villia (or whatever) are dying off (or whatever lol). I already feel better not eating gluten, and thats all you need to know. You dont need a doctor to tell you to stop eating gluten - try it, if it helps, stick with it. (although if you really want another blood test, do that before you stop eating it)

Cara

cruelshoes Enthusiast
cruelshoes
Posted
Several years ago I was tested for Celiac by blood test which was positive. They followed up with a biopsy which was negative for Celiac but positive for Crohn's. Since then I have had SO many physical problems such as fibromyalgia, rashes that are mostly upper trunk, face and scalp, fatigue with a capital F, interstitial cystitis and some thyroid issues. I saw my doctor for an EGD/colonoscopy followup today and he told me I was again negative for celiac on biopsy done a month ago and said I was one in 500 people who have pos. serology and negative biopsy. My question is DO I possibly have it? I have heard on another message board that because I had a positive serology I have it. Can you even have Crohn's AND Celiac at the same time? I'm a nurse but I'm out of my element with this one. I have an appt with my internist on Feb 4th and was thinking of having him run the blood work again just to be safe but I KNOW he told me I was positive years ago.

HELP!?

The bloodwork for celiac is actually a group of tests. Each one individually is less important as looking at them as a whole. My question would be which of the celiac tests did you test positive on? If it was the Ttg or Ema, those 2 are hightly predictive of celiac disease. I think it would be wise to get a copy of your bloodwork, including the lab ranges. If you had that in fromt of you, it would help you (and us) better answer the question.

Also, I think your doctor's figure of 1 in 500 with celiac getting a negative biopsy while still having positive serology may be a bit low. Damage to the villi can be patchy. If the doctor doesn't take enough samples, or takes them in an area that has not yet experienced extensivve damage, one could definitely get a negative biopsy result but still have celiac disease.

If your doctor, or several doctors, have told you that your serology is positive for celiac, you very likely have it.

loraleena Contributor
loraleena
Posted

Hi Sandy its loraleena from over at ICnetwork. Why don't you ask your doc for the old results and post them. If you have positive serology you have it. Like I said the damage to your gut may be minor right now, but continued eating of gluten will slowly chip away at your health as it may already be doing since you have IC and other issues. You could always go gluten free for a month and see if you notice any differences. If you add it back and have reactions, then you have your answer anyway. Make sure you don't go gluten free before testing though.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,661
    • Most Online (within 30 mins)
      7,748
    Diver Belle
    Newest Member
    Diver Belle
    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

    • Julie 911
      Medication

      By Julie 911 · Posted

      I finally got rhe answer and Tylenol is ok. Thanks everyone 
    • dublin555
      Medication

      By dublin555 · Posted

      Hey Julie! I was in a similar situation before my biopsy and my gastro said Tylenol was fine. Just avoid ibuprofen or anything anti-inflammatory until you're cleared. Hope your surgery goes smoothly!
    • trents
      Medication

      By trents · Posted

      I don't see how cornstarch could alter the test results. Where did you read that?
    • knitty kitty
      Medication

      By knitty kitty · Posted

      For pain relief I take a combination of Thiamine (Benfotiamine), Pyridoxine B 6, and Cobalamine B12.  The combination of these three vitamins has analgesic effects.  I have back pain and this really works.  The B vitamins are water soluble and easily excreted.   Hope this helps!  Keep us posted on your results!
    • knitty kitty
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By knitty kitty · Posted

      Welcome to the forum, @Xravith. I experienced similar symptoms before my diagnosis.  Mine were due to the loss of vitamins and minerals, essential nutrients we must get from our food.  With Celiac Disease, the intestinal lining, made up of thousands of villi, gets damaged and cannot absorb essential vitamins and minerals, especially the eight B vitamins.  The loss of Thiamine B 1 can cause muscle loss, inability to gain weight, edema (swelling), fatigue, migraines and palpitations.  Low thiamine can cause Gastrointestinal Beriberi with symptoms of nausea, abdominal pain and bloating.   Thiamine is only stored for a couple of weeks, so if you don't absorb enough from food daily, as the thiamine deficiency worsens physical symptoms gradually worsen.  If you're eating lots of carbs (like gluten containing foods usually do), you need more thiamine to process them (called high calorie malnutrition).  Thiamine works with all the other B vitamins, so if you're low in one, you're probably getting low in the others, too, and minerals like iron, magnesium, zinc, and calcium, as well as Vitamin D..  Talk to your doctor about checking for nutritional deficiencies.  Most doctors rarely recognize vitamin deficiency symptoms, especially in thiamine. Get a DNA test to see if you carry any Celiac genes.  If you do not have genetic markers for Celiac, it's probably IBS.  If you do have genetic markers for Celiac, it's probably Celiac.  I was misdiagnosed with IBS for years before my Celiac diagnosis.   Keep us posted on your progress. P. S. Deficiency in thiamine can cause false negatives on antibody tests, as can diabetes and anemia.  
×
×
  • 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.