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Biopsy was positive, blood work negative...

ChooseJoy

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ChooseJoy Newbie
ChooseJoy
Posted

I need help! I have been struggling for three years with various symptoms: extreme bloating, hours in the bathroom, headaches, fatigue, skin problems, stomach pain,  joint pain, etc... My doctor wanted to do a scope to see what was going on (before any blood work, weird). I was so fed up with feeling sick I agreed. Biopsy confirmed bad acid reflux, hiatal hernia and celiac disease. After these results the doctor wanted to do the celiac panel blood work to confirm. The blood work came back negative, but my genetic testing was positive. The doctor said I do not have celiac disease because the blood work was negative. I am confused though because I have friends with celiac disease and I have heard that biopsies are the "gold standard" for diagnoses. I have started a gluten free diet, but just wondering if the doctor got the wrong diagnosis? I am not being strict with cross contamination and still am having issues, just not as extreme as before. 

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SLLRunner Enthusiast
SLLRunner
Posted

Hi Joy,

Welcome!

In a nutshell: your doctor is wrong, you you right. Biopsy is the gold standard, and the biopsy showed you have celiac.

You need to take your diagnosis seriously and work to avoid cross-contamination.  You also need to advise your family of your diagnosis because celiac is hereditary. Also, you might want to look into getting a new doctor.

squirmingitch Veteran
squirmingitch
Posted

And get your records!!! 

cyclinglady Grand Master
cyclinglady
Posted

Other things can cause villi damage:

Open Original Shared Link

Were you gluten free at the time of your blood draw for a celiac blood panel?  Exactly what tests were given?  You might not have had the entire panel.  The TTG test is good, but does not catch al celiacs.  What does your doctor say?   Consider a second opinion.  

If you wish to be gluten free...it is all or nothing.  So, watching for cross contamination is critical.  

ChooseJoy Newbie
ChooseJoy
Posted
  • Author
19 hours ago, SLLRunner said:

Hi Joy,

Welcome!

In a nutshell: your doctor is wrong, you you right. Biopsy is the gold standard, and the biopsy showed you have celiac.

You need to take your diagnosis seriously and work to avoid cross-contamination.  You also need to advise your family of your diagnosis because celiac is hereditary. Also, you might want to look into getting a new doctor.

Thank you. I asked him about the cross-contamination and he said "it's not that big of a deal". I am looking for a new doctor!

 

ChooseJoy Newbie
ChooseJoy
Posted
  • Author
15 hours ago, cyclinglady said:

Other things can cause villi damage:

Open Original Shared Link

Were you gluten free at the time of your blood draw for a celiac blood panel?  Exactly what tests were given?  You might not have had the entire panel.  The TTG test is good, but does not catch al celiacs.  What does your doctor say?   Consider a second opinion.  

If you wish to be gluten free...it is all or nothing.  So, watching for cross contamination is critical.  

This is good info. They at first thought I had Chron's but that all tested negative. I was not gluten free at the time of the blood panel. I called to see exactly what was tested in the blood draw, but still have not heard back. I had an endoscopy, colonoscopy and the "celiac panel" blood draw plus the genetic testing.

It's all confusing because for two weeks before the blood draw, going off of the positive biopsy results they kept saying I have Celiac Disease. After the blood draw results came back negative they said you do not have it, you are probably non-celiac gluten intolerant you can go gluten free but do not worry about cross-contamination. My genetic testing was positive, but I know that can be positive without the disease being active.

I might just need a new doctor and a second opinion. :(

cyclinglady Grand Master
cyclinglady
Posted

Get your celiac blood panel results from your doctor and make sure you had the entire panel.  This is the entire panel list:

Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
 
Why do do I push for the entire panel?  If my doctor did not order the entire panel, my diagnosis would have been missed.  I test negative to the TTG tests even on follow-up testing (post severe glutening).  
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    • cristiana
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      By cristiana · Posted

      Thank you for the update.  So interesting to know how things are changing, when I was diagnosed I had very similar blood results but still had to have the endoscopy.  Glad you know where you stand.  As your father has celiac disease you probably already know a lot about it, but do contact us if we can help further.
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      Welcome to the forum, and thank you for sharing your detailed experience. It sounds like you’ve been through a lot over the past several months, and it’s understandable to feel frustrated after navigating unclear diagnoses and conflicting advice. Since you’ve found relief with a gluten- and corn-free diet, it might be worth continuing that approach for now, especially given your current commitments to culinary classes. You could consider working with a knowledgeable dietitian or a gastroenterologist who specializes in food intolerances and celiac disease to explore potential intolerances or other conditions without immediately reintroducing gluten. If confirming celiac disease is important for your long-term health management, you could plan for an endoscopy during a less busy period, ensuring you follow the gluten challenge protocol beforehand. In the meantime, prioritizing your well-being and avoiding known triggers seems like a practical step. Always advocate for yourself with doctors, and seek second opinions if needed—your health concerns are valid. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • trents
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      Welcome to the forum, @Ryangf! If you don't have celiac disease you could still have NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms but NCGS does not damage the lining of the small bowel as does celiac disease. Some experts feel NCGS can be a precursor to the development of celiac disease. NCGS is 10x more common than celiac disease. There is no test for it. A diagnosis of NCGS is arrived at by first ruling out celiac disease by formal testing. At the end of the day the antidote for both is the same, namely, life-long abstinence from gluten. Yes, corn is a common cross-reactor with gluten for some celiacs. So are oats, soy, eggs and dairy.  I have concern with your possible exposure to wheat flour dust during your culinary training. It gets in the air, you breathe it in, it gets trapped in the mucous of your mouth and airway and winds up in your gut. If you decide to go forward wit the "gluten challenge" for formal celiac disease testing, aim for the daily consumption of 10g of gluten (about the amount in 4-6 slices of wheat bread) for four weeks leading up to the day of either the blood draw or the endoscopy/biopsy.
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