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

Anyone Diagnosed With Biopsy And Had Negative Blood Work?

Chelle15

Recommended Posts

Chelle15 Apprentice
Chelle15
Posted

I was tested by a blood panel and it came back with 2 positive markers, however my new GI doctor said that based on the two markers that came back positive he does not think I have it. He still wants me to get a biopsy, but he is doubtful. So I am wondering if there is still a chance I could come back with a positive biopsy. It is not that I wanted to have a disease, but I thought I finally had an answer to my problems. Just curious if anyone had a similar experience. I posted a similar post in pre-diagnosis, sorry if anyone had to read my whining twice. I am just trying to get as many answers and info as possible. THANK YOU!!!!

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

What were the two positive markers exactly? It sounds to me like he dismisses positive bloodwork as not meaning anything, when he might be totally wrong.

Chelle15 Apprentice
Chelle15
Posted
  • Author

Okay, I am going to type exactly what it says, because I am not sure what I need to put down:

IGA: 144

Endmysial IgA Abs: <1:10

Gliadin IgG Abs: 49(H)

Gliadin IgA Abs: 23(H)

Transglutaminas IgA: 4

THANK YOU!

penguin Community Regular
penguin
Posted

What are the reference ranges?

Chelle15 Apprentice
Chelle15
Posted
  • Author

Sorry...here is everything. Thank you for your time.

Component Reference

IgA -- 78-391 mg/dL --144

Endomysial IgA Abs --<1:10

Gliadin IgG Abs-- --Low: < 20 Units --49(H)

Gliadin IgA Abs --Low: < 20 Units --23(H)

Transglutaminas IgA --Low: < 20 Units --4

Nancym Enthusiast
Nancym
Posted

Yes! I talk to someone on another message forum who had a positive biopsy with negative blood work. She had completely flattened villi. Dr. Fine's work has also found people with negative blood and positive biopsy. That's why he thinks testing stool is so much better than blood.

mle-ii Explorer
mle-ii
Posted

I don't get it, from the looks of the numbers it looks like you are positive for Celiac if you only go with the bloodwork. What am I missing that the Dr isn't?

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

Celiac.com Sponsor (A8-M):


penguin Community Regular
penguin
Posted
I don't get it, from the looks of the numbers it looks like you are positive for Celiac if you only go with the bloodwork. What am I missing that the Dr isn't?

The less specific blood markers are the positive ones, although they are the more sensitive tests. If the TtG is normal, a lot of dr's just write off celiac.

luvs2eat Collaborator
luvs2eat
Posted

My daughter had inconclusive blood work and a positive endoscopic biopsy.

nikki-uk Enthusiast
nikki-uk
Posted

My husband had negative bloodwork (tTg also) but a positive biopsy.

Guest Lisa Monet
Guest Lisa Monet
Posted
Sorry...here is everything. Thank you for your time.

Component Reference

IgA -- 78-391 mg/dL --144

Endomysial IgA Abs --<1:10

Gliadin IgG Abs-- --Low: < 20 Units --49(H)

Gliadin IgA Abs --Low: < 20 Units --23(H)

Transglutaminas IgA --Low: < 20 Units --4

My bloodwork was inconclusive, but I had flattened villi. It looks to me like you are IgA deficient, as am I. From what I've read, an IgA deficiency can distort your blood work results. Dr. Fine diagnosed my celiac disease.

Lisa

mle-ii Explorer
mle-ii
Posted
My bloodwork was inconclusive, but I had flattened villi. It looks to me like you are IgA deficient, as am I. From what I've read, an IgA deficiency can distort your blood work results. Dr. Fine diagnosed my celiac disease.

Lisa

How can you tell that they are IgA deficient? I thought that the first test listed said that they were within the range or am I again misinterpreting. Must be the brain fog. ;)

Chelle15 Apprentice
Chelle15
Posted
  • Author

Thank you for all of your responses. It is just so confusing. So if they find out I don't have it does that mean something else is wrong? Or it just gets dropped?

I just want an answer so I can stop feeling so crappy. And I am so used to them telling me nothing is wrong that I clung on tight to the fact that I may have found out what was wrong. So when the GI told me he didn't think I had it I was so disappointed.

Thank you for all of your support.

Just wanted to add, I will be trying a gluten free diet no matter what the results are.

floridanative Community Regular
floridanative
Posted
The less specific blood markers are the positive ones, although they are the more sensitive tests. If the TtG is normal, a lot of dr's just write off celiac.

What about when only your tTg is high (indicating Celiac) and they still write it off as not Celiac. That's what happened to me. Two different docs read my panel and both thought I did not have it. Of couse the biopsy proved them both wrong. My biopsy was done by one of the doubting docs. - boy was his face read when my results came back. :lol::lol::lol:

Chelle15 Apprentice
Chelle15
Posted
  • Author

Which one(s) is/are the tTg?

Aerin328 Apprentice
Aerin328
Posted

Just wanted to note that I only had an elevated gliadin IgG antibody (score 57, range max 20) and though I had two doctors tell me it meant nothing, I one that that said, "It is almost definite that you have celiac's disease." That final doctor diagnosed me on the spot w/out a biopsy (which is quite rare). Regardless, I have gone to Enterolab (www.enterolab.com) in hopes of getting a more specific/ conclusive answer, I hear they are great! But just wanted to let you know that your bloodwork certainly does look potentially positive. Also, I've heard that the anti-gliadin antibody IS 100% a sign of reaction to gluten; it just doesn't necessarily mean Celiac disease (which means flattening/damaging of your poor villi).

Guest Lisa Monet
Guest Lisa Monet
Posted
How can you tell that they are IgA deficient? I thought that the first test listed said that they were within the range or am I again misinterpreting. Must be the brain fog. ;)

Actually, it must be my brain fog! I just looked at the bottom number for some reason! :blink:

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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.