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

Tests results, negative and positive, please help me.


Gloria L

Recommended Posts

Gloria L Enthusiast
  • Hi, I'm new to this forum, I hope someone can help me with these tests results, I started feeling sick in March 2020 and getting tested for celiac disease since June 2020 with negative results, even the biopsy done in August was negative. The biopsy report details the findings from specimen A through specimen F, so I’m assuming only 6 samples were taken?? Biopsy was all normal and they even ruled out celiac disease, it says “Duodenal bulb appeared normal, biopsy done to rule out celiac disease”, the doctor confirmed no celiac disease. After that, more blood tests were done with more negative results until this past December, it was positive for celiac disease. Is this possible, to have in the beginning negative blood tests and biopsy results and then all of a sudden a positive blood test? Thank you for reading, please see the pictures.

Screenshot (6).png

Screenshot (8).png

Screenshot (11).png

Screenshot (12).png

Screenshot (15).png

Screenshot (16).png


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

You DGP results, which are the best tests available, are high positive, so it looks like you likely have celiac disease. Many doctors are diagnosing celiac disease via blood tests alone, however, your doctor may also want you to do a endoscope/biopsy to confirm it. Normally you need to keep eating gluten until that part is finished, so be sure to consult with your doctor regarding their interpretation of your blood tests, and whether or not you need a biopsy.

Gloria L Enthusiast
32 minutes ago, Scott Adams said:

You DGP results, which are the best tests available, are high positive, so it looks like you likely have celiac disease. Many doctors are diagnosing celiac disease via blood tests alone, however, your doctor may also want you to do a endoscope/biopsy to confirm it. Normally you need to keep eating gluten until that part is finished, so be sure to consult with your doctor regarding their interpretation of your blood tests, and whether or not you need a biopsy.

Hi Scott, an endoscopy was done in August 2020, the diagnosis of the biopsy is as follows: "Duodenal mucosa with intact villous architecture and no increase in intraepithelial lymphocytosis seen", "Duodenal bulb appeared normal, biopsy done to rule out celiac disease".

The DGP test was in December 2020 ordered by an Integrative medicine doctor, that's why I'm confused, in the beginning all blood tests and even the biopsy were negative until this past December that this new doctor ran the DGP test with a positive result, this doctor told me to keep away from gluten and sent me home, he will see me again in a month. As per this doctor, I started going gluten free since January 7th. 

Gloria L Enthusiast

Should I still call the GI doctor?

Scott Adams Grand Master

Many people who are gluten sensitive don't have villi damage. It would not hurt to contact the GI and aske them how many samples they took, and if they used the Marsh scale to grade them. At least 4 samples are recommended, and then they should be graded using the the Marsh scale.

Given your high DGP results though, some doctors would diagnose you with celiac disease based on these results alone, which it sounds like they've done. If your doctor has recommended a gluten-free diet, and you are on one now, I would stay gluten-free. You don't want to end up with intestinal damage. 

Gloria L Enthusiast
1 hour ago, Scott Adams said:

Many people who are gluten sensitive don't have villi damage. It would not hurt to contact the GI and aske them how many samples they took, and if they used the Marsh scale to grade them. At least 4 samples are recommended, and then they should be graded using the the Marsh scale.

Given your high DGP results though, some doctors would diagnose you with celiac disease based on these results alone, which it sounds like they've done. If your doctor has recommended a gluten-free diet, and you are on one now, I would stay gluten-free. You don't want to end up with intestinal damage. 

Thanks Scott, by looking at the biopsy report, it looks like they took 6 samples because it has reports from specimens A,B,C,D,E,F. I'll call tomorrow the GI doctor and ask anyways. I started to experience digestive problems in March, before March I never had any. The biopsy was done in August, do you think that it could be a possibility that between March and August there was not enough time to cause significant damage to my intestine even though I was having digestive problems already? or only when the intestine has been damaged you start having symptoms? in symptomatic patients I mean. 

Scott Adams Grand Master

Yes, it is a possibility that your celiac disease, similarly to Type I diabetes, kicked in at that time. If you keep eating gluten I suspect your symptoms would continue to get worse and worse, and you may end up with full blown celiac disease with flattened villi and malabsorption of nutrients (trust me that you don't want to go there!).


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



Celiac.com Sponsor (A8-M):



Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • 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. - Russ H replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    2. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    3. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    4. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    5. - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,582
    • Most Online (within 30 mins)
      7,748

    Kim RS
    Newest Member
    Kim RS
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary. 
    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
×
×
  • 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.