Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Help!negative Test Blood Test Results-but Have Dh?

carlaj357

Recommended Posts

carlaj357 Newbie
carlaj357
Posted

I am so very confused and frustrated! Just got back my blood test results to see if I am gluten sensitive and they came back negative. However, I have had a confirmed diagnosis of Dermatitis Herpetiformis-over 10 years ago. I thought that if you have DH, then you should have a positive blood test as well, right??? I have tried a no gluten diet for 3 weeks now and have had great results-hives have gone away, DH has gotten better, stomach is better, etc. I had been off gluten for about 1 1/2 weeks before the blood test-but the Dr. said that would not matter.

How can I have a negative blood test, but still have DH? Has that happened to anyone else?

Thanks!

Carla in GA

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

Celiac.com Sponsor (A8-M):


mftnchn Explorer
mftnchn
Posted

Yes, you can have false negative blood tests, they are quite common. Being gluten-free even for that short time will effect it.

You have a firm DH diagnosis, that is all you need. You are celiac and are one of us!

woolwhippet Explorer
woolwhippet
Posted

Here is some info I found after my own neg blood test:

"if a person stops eating foods with gluten before being tested, the results may be negative for Celiac Syndrome even if Celiac Syndrome is actually present. About 2% of people with an IgA deficiency have false-negative results.

The lab that does the testing does matter. Some labs have "normal" ranges set so high that practically no one tests positive even with biopsy-provable Celiac Disease. Remember, antibodies present means there already is tissue damage. People with levels just above baseline seem to respond to a gluten-free diet."

Dr Rima, Open Original Shared Link

KellieC2 Newbie
KellieC2
Posted
I am so very confused and frustrated! Just got back my blood test results to see if I am gluten sensitive and they came back negative. However, I have had a confirmed diagnosis of Dermatitis Herpetiformis-over 10 years ago. I thought that if you have DH, then you should have a positive blood test as well, right??? I have tried a no gluten diet for 3 weeks now and have had great results-hives have gone away, DH has gotten better, stomach is better, etc. I had been off gluten for about 1 1/2 weeks before the blood test-but the Dr. said that would not matter.

How can I have a negative blood test, but still have DH? Has that happened to anyone else?

Thanks!

Carla in GA

Hi! I am new to the group myself. I have been on a gluten free diet for about 6 weeks. My doctor told me to try that first- she said something about there are many levels of Celiac disease and they don't all show up in a blood test. I really didn't think it would make a difference- but it has. I still have problems on ocassion, but not like before. I also found out I had an aunt ( who passed away several years ago and who I really didn't know) that had the disease so it would make more sense. I feel kinda bad because I didn't get a real diagnosis- but can you argue with results? What does anyone else think? Thanks for the input!

Guest j_mommy
Guest j_mommy
Posted

Dh=celiac. That is all you need. Also some have neg blood work but positive biopsies and sometimes the other way around.

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. cristiana
      - cristiana commented on Debado's blog entry in Debado
      10

      Gluten migranes at night

      The first symptoms I had of coeliac disease were migraines. I think your doctor needs to test you for coeliac disease. The fact you are having migraines at night is interesting, but I never used to drink enough and my headaches were worse when I woke up in the morning. Dehydration was also a big cause for me.
    2. trents
      - trents commented on Debado's blog entry in Debado
      10

      Gluten migranes at night

      I'll ask the same question that knitty kitty asked? On what basis did your Dr arrive at the conclusion that you have gluten intolerance? But let's be clear about terminology because the terms "gluten intolerance" and "gluten sensitivity" are typically used interchangeably out there in the wild and both are used indiscriminately to speak of two different...
    3. Brandy969
      - Brandy969 replied to Jack Common's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      24

      What should I do with these test results?

      Thank you! I didn’t know this!
    4. Debado
      - Debado commented on Debado's blog entry in Debado
      10

      Gluten migranes at night

      Interesting....my Dr says since migranes are my only symptom she says I have gluten intolerance. I have stopped eating gluten. However, it seems to sneak in from time to time. Example: I ate canned mushrooms! Never thought canned mushrooms could have gluten, but they did. I had a migrane for 3 nights straight. Or I eat out, I think I am getting gluten free...
    5. trents
      - trents commented on Debado's blog entry in Debado
      10

      Gluten migranes at night

      What medicine did they give you for migraines? Does it help much? I also suffer from migraines and am on one med for prevention and another for relief after onset. Many times, my headaches start during the night when I'm sleeping but not always. Have you cut back on gluten consumption of late? As knitty kitty explained, you must have been eating generous...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,798
    • Most Online (within 30 mins)
      7,748
    PatrickJ
    Newest Member
    PatrickJ
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Brandy969
      What should I do with these test results?

      By Brandy969 · Posted

      Thank you! I didn’t know this! 
    • knitty kitty
      Night time migranes

      By knitty kitty · Posted

      Welcome to the forum, @Debado, Migraines at night can be caused by high levels of histamine.  Histamine Intolerance can cause physical symptoms like migraines. Foods contain histamine.  Our bodies make histamine, an important neurotransmitter.  Our bodies naturally produce more histamine at night as part of our circadian rhythm, our sleep-wake cycles.   Some foods like gluten and nuts contain high histamine themselves or trigger our bodies to produce more histamine.  A low histamine diet is helpful, cutting out high histamine foods and histamine-release triggering foods.   Our bodies can breakdown a certain amount of histamine, but sometimes our bodies cannot keep up with the amount of histamine needing to be broken down, and can be overwhelmed by the amount of histamine resulting in Histamine Intolerance and health problems like migraines.   Vitamins C, B12, Pyridoxine B6 and thiamin B1 help lower histamine levels.  Our bodies use these vitamins to make an enzyme DOA (diamond oxidase) that breaks down histamine.  DAO from beef or pork kidney is an over-the-counter supplement that can be taken.   Riboflavin B2 is very helpful for relieving migraines.   Have you been diagnosed with Celiac Disease or suspect you have it?   Happy Holidays!
    • knitty kitty
      Guidance on next steps after the lab tests

      By knitty kitty · Posted

      @ABP2025, Have you thought about having a DNA test to check for known Celiac genes?    I do hope you will make sure that you are getting sufficient gluten to provoke an autoimmune response strong enough that the antibodies can be measured in the blood.  See article below. Celiac disease affects the absorption of nutrients,  including vitamins and minerals.  Your symptoms may be associated with thiamine deficiency.   Migraines and peripheral neuropathy, phimosis (yes, even this), and white spots on the brain are seen in thiamine deficiency.  Celiac disease disrupts the absorption of all the essential nutrients, but thiamine can be quickly depleted, in as little as three days.  Thiamine deficiency can occur even if blood tests show normal levels.  Thiamine deficiency can affect antibody production.      
    • Debado
      Night time migranes

      By Debado · Posted

      Anybody ever heard of getting a migrane from gluten and coconut oil ONLY at night?   If I consume gluten or coconut oil, even in the morning,  I will get a migrane. But not until half way thru the night. I don't get this. Why at night? Why not right after I eat?
    • trents
      What should I do with these test results?

      By trents · Posted

      Early on,  DQ2 and DQ8 were the primary genes that have been connected to the potential to develop celiac genes but more recent genetic research suggests there may be more.
×
×
  • Create New...