Positive blood test, negative endoscopy

[nlkopp17]

I was diagnosed with Celiac about 13 years ago.  My GI doctor said my blood test was positive but when I had my endoscopy he said it looked like classic celiac and I should adhere to the diet.  When I got the report, however, everything came back "normal".  I stayed on a strict gluten-free diet for years then started "cheating" and have seen no difference between being strictly gluten-free or not.  Is it possible to have Celiac and a normal endoscopy?? 

[cyclinglady]

1 hour ago, nlkopp17 said:

I was diagnosed with Celiac about 13 years ago.  My GI doctor said my blood test was positive but when I had my endoscopy he said it looked like classic celiac and I should adhere to the diet.  When I got the report, however, everything came back "normal".  I stayed on a strict gluten-free diet for years then started "cheating" and have seen no difference between being strictly gluten-free or not.  Is it possible to have Celiac and a normal endoscopy?? 

I am sorry that you are struggling with this.  Yes, you can have positives on the celiac panel and a negative biopsy.  The intestinal tract is vast.  Bigger than a tennis court!  It can be easy to miss areas of damage.  This is one reason why experts recommend more than four samples from a various locations.  You could have had a false positive on the blood test.  Other autoimmune disorders can raise the TTG falsely. 

But you were you initially sick with GI symptoms?  Did they resolve in a gluten-free diet?  Have you had follow-up celiac care (blood tests for antiobodies and nutritional deficiencies?  Did you keep copies of test results?   What did your GI say about the conflicting reports?  

Celiacs with healed intestines have reported cheating and feeling fine.  But once a celiac, always a celiac, so any repeated exposures is going  to re-activate the disease.  

 

[Awol cast iron stomach]

I couldn't finish my gluten challenge past 6 days so the gold standard damage a Dr hope to see was not there, but I felt every bit of it and more.

they also spent more time focused on my esophagus and stomach because that was where they saw the most  transparent damage. They never gave me my full pathology report just the immediate images /report and a diagnosis of Barrett's & food intolerances . I was told to keep a food dairy. My body could not get past 6 days of gluten. I skipped  one day after the 6 as a much needed break. I was becoming very dehydrated. I tried to eat more to finish the challenge but couldn't. I couldn't wait for the scopes so I could get an IV I wanted and needed the hydration. Water wasn't working.

I still have no idea how they could miss intestinal damage based on my symptoms and how I felt , but the dr I had said the small intestine looked fine from what she and her med student saw during the procedure .

I was gluten-free for 31/2 years prior to my gluten challenge, I was told to take ppi s and Zyrtec during my gluten challenge so I'm not sure how that factored in. My bloat was more gradual and less extreme. I believe because of the anti histamine and the ppi acting as a h2 receptor blocker changed my typical immune reaction, but I was still reacting. It was was gi but I had even  more systemic pain symptom fall out then I had prior to being  gluten-free. I honestly don't think one biological system was not effected in some way. 

They told my husband since your wife and you both report she can't eat gluten tell her to return to her gluten-free diet. ironically I then got 8 additional food intolerances and multiple chemical & additives /preservatives sensitivities. The experts on celiac .com said go Whole Foods only . It helps.

As I heal the issues improve, but I still have more issues that occurred all at once that now linger longer than I had prior to 2016. 

So yes I believe one can miss it or for circumstances as mine the symptoms are so serve that the patient can't finish the current required gluten challenge duration protocol/time line. This can limit their test and equipment detection.

you may have healed well over 13 years . I would agree with cycling lady once a celiac always a celiac. If you have been gluten-free for a while the amount gluten consumed, your immune health now stronger  , stress level, overall well being maybe much better than 13 years ago .

my opinion your immune system maybe manifesting the reactive symptoms different than 13 years ago, but it doesn't mean the immune system is not detecting it and affecting you.

as the wise gluten-free in D.C. Answered me they can't rule you in definitivly, but they can't rule you out either. Which is why I'm back on the lifestyle after the challenge.

i would suggest sticking with the lifestyle.

[cyclinglady]

2 hours ago, Awol cast iron stomach said:

I couldn't finish my gluten challenge past 6 days so the gold standard damage a Dr hope to see was not there, but I felt every bit of it and more.

they also spent more time focused on my esophagus and stomach because that was where they saw the most  transparent damage. They never gave me my full pathology report just the immediate images /report and a diagnosis of Barrett's & food intolerances . I was told to keep a food dairy. My body could not get past 6 days of gluten. I skipped  one day after the 6 as a much needed break. I was becoming very dehydrated. I tried to eat more to finish the challenge but couldn't. I couldn't wait for the scopes so I could get an IV I wanted and needed the hydration. Water wasn't working.

I still have no idea how they could miss intestinal damage based on my symptoms and how I felt , but the dr I had said the small intestine looked fine from what she and her med student saw during the procedure .

I was gluten-free for 31/2 years prior to my gluten challenge, I was told to take ppi s and Zyrtec during my gluten challenge so I'm not sure how that factored in. My bloat was more gradual and less extreme. I believe because of the anti histamine and the ppi acting as a h2 receptor blocker changed my typical immune reaction, but I was still reacting. It was was gi but I had even  more systemic pain symptom fall out then I had prior to being  gluten-free. I honestly don't think one biological system was not effected in some way. 

They told my husband since your wife and you both report she can't eat gluten tell her to return to her gluten-free diet. ironically I then got 8 additional food intolerances and multiple chemical & additives /preservatives sensitivities. The experts on celiac .com said go Whole Foods only . It helps.

As I heal the issues improve, but I still have more issues that occurred all at once that now linger longer than I had prior to 2016. 

So yes I believe one can miss it or for circumstances as mine the symptoms are so serve that the patient can't finish the current required gluten challenge duration protocol/time line. This can limit their test and equipment detection.

you may have healed well over 13 years . I would agree with cycling lady once a celiac always a celiac. If you have been gluten-free for a while the amount gluten consumed, your immune health now stronger  , stress level, overall well being maybe much better than 13 years ago .

my opinion your immune system maybe manifesting the reactive symptoms different than 13 years ago, but it doesn't mean the immune system is not detecting it and affecting you.

as the wise gluten-free in D.C. Answered me they can't rule you in definitivly, but they can't rule you out either. Which is why I'm back on the lifestyle after the challenge.

i would suggest sticking with the lifestyle.

AWOL....did they even take intestinal biopsies?  My visual looked good per my GI, but my biopsies revealed a Marsh Stage IIIB.   

[Awol cast iron stomach]

On 7/14/2017 at 5:05 PM, cyclinglady said:

AWOL....did they even take intestinal biopsies?  My visual looked good per my GI, but my biopsies revealed a Marsh Stage IIIB.   

They did but their main concern was about the Barrett's they found. so they told my husband that was more important then our celiac concerns. Additionally, the follow up reports I was provided appear to be incomplete. Only the first (bulb) and second (descending) part of the dueodenum are discussed not the 3 and 4. I am confused as to where those details are.

my husband and I have concerns but in the end they told him if you and your wife believe she reacts to gluten tell her not to eat it. So the end result was you have Barrett's and don't eat gluten.

 

[Gemini]

15 minutes ago, Awol cast iron stomach said:

They did but their main concern was about the Barrett's they found. so they told my husband that was more important then our celiac concerns. Additionally, the follow up reports I was provided appear to be incomplete. Only the first (bulb) and second (descending) part of the dueodenum are discussed not the 3 and 4. I am confused as to where those details are.

my husband and I have concerns but in the end they told him if you and your wife believe she reacts to gluten tell her not to eat it. So the end result was you have Barrett's and don't eat gluten.

 

But Barrett's is caused by acid reflux and acid reflux can be a direct result of...............undiagnosed Celiac Disease.  Once again, they fail to trace back to the most probable root cause. 

[Awol cast iron stomach]

On 7/18/2017 at 4:51 PM, Gemini said:

But Barrett's is caused by acid reflux and acid reflux can be a direct result of...............undiagnosed Celiac Disease.  Once again, they fail to trace back to the most probable root cause. 

Gemini nailed it!  Can you be my Dr? I asked them directly and they did not answer. They wanted me to go have some surgical procedure my insurance would not cover . Sigh 

thanks for getting it 

?

[Gemini]

6 hours ago, Awol cast iron stomach said:

Gemini nailed it!  Can you be my Dr? I asked them directly and they did not answer. They wanted me to go have some surgical procedure my insurance would not cover . Sigh 

thanks for getting it 

?

Ha, Ha!!!!!!  If I wouldn't get in trouble for practicing without a license, I would!    

I get it because that is what they did to me for years.  I never had acid reflux but had enough other symptoms that all screamed Celiac but no.........they told me that my severe stomach pain might be acid reflux so take this script and go away. They never even tried to figure it out past the 10 minutes allowed for the appointment. I'll never forget one doctor that I pushed back on and told her I was not there for meds but to find out what was actually wrong and she got so mad she left the room and never came back. All they kept doing was trying to shove pills down my throat.  

I am guessing that the procedure is the one where they tighten the sphincter muscle at the entrance to your stomach? I know so many people who had that done because it's become so common to push that if the meds aren't working well. Follow the money........

If acid reflux becomes that bad, then you have to start looking at food, period.