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Saw My Gastroenterologist Today...

Tabasco

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Tabasco Apprentice
Tabasco
Posted

I think she might be a keeper. She didn't dismiss my symptoms or make me feel like a hypochondriac. She said that a lot of my symptoms sound like celiac but some may have other causes. She is very thorough. She is testing me for everything. These are the labs that I can remember:

Celiac Panel

Antibodies

B12

Ferritin

Thyroid (TSH)

CBC w/ diff

Cholesterol

A1C (for diabetes)

Hep screen (since I have a tattoo)

U/S for gallbladder

Transit time for chronic constipation (swallow pills with markers in them and follow up with x-rays at intervals)

Diabetes, heart disease, gallbladder, hepatitis, stroke all run in my immediate family. My older sister had a stroke at 23. She has a genetic blood disorder called Factor V deficiency, which causes clotting.

Dr. Jagiella is referring me to an Oncologist to be screened for Factor V deficiency as well. She said that if I have it then that can affect the circulation to my gut thus affecting my transit time due to small clots in the arteries.

She suspects that I may have Metabolic Syndrome as well. That would explain my weight gain. Today I was hypertensive in the office. I guess I have been for my last few dr. visits. And I know that my cholesterol is elevated. Has been for over 20 yrs. Not high enough to treat medically but hangs out around 200. She said my liver felt slightly enlarged too. Ho- hum...I am feeling like a fatty-boom-ba-latty now.

She saw the rash on my back and said "Oh yes...this needs to be biopsied". She seemed suspicious of it. So it's back to the derm too.

She said she isn't going to give me any meds or tell me anything until we get the labs back. If I test positive then she wants to do the biopsy for confirmation.

So that's where I am today. Another step closer to knowing one way or the other.

I'll keep you posted.

Stef

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jerseyangel Proficient
jerseyangel
Posted

She sounds very thorough, Stef--please keep us posted. :)

Tabasco Apprentice
Tabasco
Posted
  • Author

Still waiting on the genetic results but so far everything has come back normal. I haven't seen the numbers, just going by what the nurse said. I guess this is good news but it is a little disappointing. When you have all of these symptoms all of your life and think that maybe they're not all random, that there is really a cause, it's a relief. I feel like a hypochondriac. I don't WANT to be sick. I don't want to have a "syndrome" or a "disease". I don't want to even be allergic or sensitive to anything.

My gallbladder U/S is scheduled for tomorrow but I can't make it. I forgot to tell work about it and it's too late to spring it on them.

My transit time study is next week so I will do that and I will also see the hematologist and the derm. I still need to know if I have Factor 5 deficiency and I need a biopsy of the rash...which is why I started this journey to begin with.

I'm not anemic, or diabetic, or hypothyroid. I don't have hepatitis either...thank God. My B12 is good too.

We'll see what the derm says.

So...can I be positive for DH but not have positive labs?

ravenwoodglass Mentor
ravenwoodglass
Posted

s

Still waiting on the genetic results but so far everything has come back normal. I haven't seen the numbers, just going by what the nurse said. I guess this is good news but it is a little disappointing. When you have all of these symptoms all of your life and think that maybe they're not all random, that there is really a cause, it's a relief. I feel like a hypochondriac. I don't WANT to be sick. I don't want to have a "syndrome" or a "disease". I don't want to even be allergic or sensitive to anything.

My gallbladder U/S is scheduled for tomorrow but I can't make it. I forgot to tell work about it and it's too late to spring it on them.

My transit time study is next week so I will do that and I will also see the hematologist and the derm. I still need to know if I have Factor 5 deficiency and I need a biopsy of the rash...which is why I started this journey to begin with.

I'm not anemic, or diabetic, or hypothyroid. I don't have hepatitis either...thank God. My B12 is good too.

We'll see what the derm says.

So...can I be positive for DH but not have positive labs?

Yes you can have DH and not have positives you can also have celiac and not have positive labs or biopsy. False negatives are not unusual. When your done with all testing for celiac be sure to give the diet a good try no matter what the results. Being gluten free will not effect testing for anything other than celiac so it does not hurt to try the diet while other stuff is being excuded.

OptimisticMom42 Apprentice
OptimisticMom42
Posted

My son had a negative celiac blood test but had DH on the back of his knees, lots of other celiac type symptoms and a positive response to the diet. So I have agree with Ravenwoodglass, try the diet anyhow. Hope you are feeling better soon.

RA

ravenwoodglass Mentor
ravenwoodglass
Posted

One thing I forgot to mention about the DH issue. Make sure the derm is familiar with the process for biopsy. If he biopsies the lesions themselves that will come back negative. The biopsy needs to be tissue beside the lesions.

Tabasco Apprentice
Tabasco
Posted
  • Author

I'm looking at the labs that I've gotten back so far and all I see that that might be specificly part of a celiac panel is

Immunoglobulin A, Qn, Serum - 310 range 70 - 400.

Don't know what this means though. Looks like it's in the normal range but I don't know exactly what it's measuring.

What results, specifically, should I be looking for?

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  • Posts

    • Scott Adams
      Question about biopsy

      By Scott Adams · Posted

      Your experience highlights a common frustration in celiac disease diagnosis—discrepancies between lab results, biopsy findings, and clinical symptoms. The "localized mild nodular mucosa" noted in your duodenal bulb could indeed be significant, even if the overall pathology was deemed negative. Nodularity in the duodenum is often associated with lymphocytic infiltration, a feature seen in early celiac disease (before villous atrophy develops) or in conditions like H. pylori infection, chronic inflammation, or even food sensitivities (e.g., gluten or dairy). Since you had strongly positive celiac labs (e.g., TTG-IgA, EMA, or DGP), this nodularity might reflect an early or patchy immune response to gluten that wasn’t severe enough to meet traditional biopsy criteria (Marsh 3 damage). Some studies suggest nodular mucosa can precede classic celiac changes, especially in seropositive patients. Given your lab results and symptoms, it’s possible you have non-celiac gluten sensitivity (NCGS) or are in an early stage of celiac where damage isn’t yet widespread. False-negative biopsies aren’t uncommon due to sampling error (celiac can be patchy) or misinterpretation of subtle changes. If you’re still symptomatic, you might discuss repeat testing (e.g., HLA-DQ typing if not already done, or a gluten challenge with both serology and biopsy) or consider a capsule endoscopy, which can visualize more of the small intestine. Alternatively, H. pylori testing or a trial of strict gluten-free diet with symptom monitoring could provide clarity. Your case underscores the importance of correlating labs, histology, and clinical response—not just relying on biopsy alone. A second opinion from a celiac-savvy GI could be worthwhile!
    • Scott Adams
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      The burning sensation you describe—particularly upon waking or after exercise—could indeed be related to systemic inflammation, which is common in autoimmune conditions like Hashimoto's and celiac disease. Gluten exposure, even in small amounts, may trigger an immune response that exacerbates inflammation, leading to the achiness and burning you feel, especially in areas like your hips and chest. Stress and poor sleep can further worsen inflammation, creating a cyclical effect. The fact that these symptoms improved before your gluten challenge but returned afterward strongly suggests a connection to gluten sensitivity. Additionally, prolonged immobility during sleep might contribute to stiffness or discomfort, but the burning sensation points more toward an inflammatory or neurological component. Your heightened food sensitivities and digestive issues could indicate ongoing gut dysfunction, possibly due to intestinal permeability ("leaky gut") from gluten exposure or autoimmune activity. Since exercise also triggers symptoms (except during your remission period), it may be worth exploring gentle movement like yoga or walking to avoid overexertion while supporting circulation. Consulting a healthcare provider familiar with autoimmune conditions—particularly one who can guide you through targeted testing for celiac (without a full gluten challenge) or assess for other triggers like histamine intolerance—might help clarify next steps. In the meantime, prioritizing anti-inflammatory foods, stress management, and restorative sleep could provide some relief.
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      Help!

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    • trents
      Help Interpreting My Lab Results? (updated)

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