Help!! Don't believe GI doctor

[Caparici]

Hello all I'm very new to all this and I'm so confused.  My test results are in the picture attached.  I had a biopsy and it said that I didn't have villi atrophy but that there were signs of mild intestinal irritation and H. pylori bacteria was found,  so GI said it's not celiac disease .  I have terrible joint pain and my ears feel like they are full with constant dizziness/vertigo.  I know that the tTG test can be low when there hasn't been damage but the other two tests were so high.  Does this mean that I am or not Celiac?  Should I stop eating Gluten? I also had low vitamin D results and ferritin was low as well.  I'm not a big gluten eater as I'm seldom hungry to begin with so could this be what has helped me.  Last night I had a big bowl of pasta and woke up this morning so bloated and unwell.  Any one have tests like this and later was in fact gluten intolerant? Any response would be greatly appreciated.

[Judy3]

You could very well be gluten intolerant and not Celiac.    Celiac causes the damage he was looking for, gluten intolerance does not although the symptoms are much the same if not identical.     If I were you, with those numbers for IgA and IgG as high as they are I would try gluten free for a month now that you've had the tests and biopsies and see how you feel.  If it helps continue, if it doesn't pursue other things.   Just my opinion but your numbers suggest Celiac and the endoscope showed no damage so I think you maybe do have Celiac.   I would go for genetic testing, it's expensive ($400?) but it will tell you one way or the other.   A person has to have one of the two genes associated with Celiac to have it.  

 

Open Original Shared Link

[squirmingitch]

The genetic testing will NOT tell you if you have celiac disease or not. It will only tell you if you have 1 of the genes for celiac but 30% of the population carries those genes & they will not all have or develop celiac - only about 1% will. For that matter there have been cases where the patient did not have either gene but are serum & biopsy proven celiac. 

How many biopsies did the doc take? That is key. 4 to 6 should always be taken.

[Caparici]

Thanks so much for your replies.   I think he took 3 from my small bowel.  My family doctor read the results pretty fast so I couldn't tell.  My daughter is also being looked at for similar issues.  Her numbers came back like mine but not as high.  She also had the endoscopy and we see the GI on Monday so I will ask how many biopsies he took for myself.  It's so frustrating here in Canada.  Everything takes so long and no one explains anything.  All I know that there is something wrong and I'm not crazy.  It all started 5 years ago and has been downhill since then.  I'm having treatment for the H-pylori bacteria so I  will go gluten free after that.  I'll post here again as I go through this all so other people can benefit.  Thanks again

[GFinDC]

The ttg being low does not prove you don't have celiac disease.  You could be one of the 2% that don't test positive on ttg-IgA but still have celiac disease.  The DGP tests are very specific to celiac disease reactions and IMHO I think they mean you have celiac.  Those immune reactions are not high for no reason.  Some doctors won't diagnose without endoscopic proof as well as antibodies though.

 

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The First Step:  tTG-IgA Test

image: https://celiac.org/wp-content/uploads/2013/07/blood-screening.webp

There are many screening blood tests for celiac disease but the most sensitive and commonly used, whether symptoms are present or not, is the tTG-IgA test.

Tissue Transglutaminase Antibodies (tTG-IgA) – The tTG-IgA test will be positive in about 98% of patients with celiac disease who are on a gluten- containing diet. This is called the test’s sensitivity.  The same test will come back negative in about 95% of healthy people without celiac disease. This is called the test’s specificity.  There is a risk of a false positive especially for people with Open Original Shared Link like Type 1 diabetes, chronic liver disease, Hashimoto’s thyroiditis, psoriatic or rheumatoid arthritis and heart failure, who do not have celiac disease.

There are other antibody tests available to double-check for potential false positives or false negatives.

Other tests:

• IgA Endomysial antibody (EMA): The EMA test has a specificity of almost 100%, but is not as sensitive as the tTG-IgA test. About 5-10% of people with celiac disease do not have a positive EMA test.  It is also very expensive in comparison to the tTG-IgA and requires the use of primate esophagus or human umbilical cord.  It is usually reserved for difficult to diagnose patients.
• Total serum IgA: This test is used to check for IgA deficiency, a harmless condition associated with celiac disease that can cause a false negative tTG-IgA or EMA result.  If you are IgA deficient, your doctor can order a DGP or tTG-IgG test.
• Deaminated gliadin peptide (DGP IgA and IgG): This test can be used to further screen for celiac disease in individuals with IgA deficiency or people who test negative for tTg or EMA antibodies.

While it is very rare, it is possible for someone with celiac disease to have negative antibody test results. If your tests were negative, but you continue to experience symptoms, consult your physician and undergo further medical evaluation.

Read more at Open Original Shared Link

[ironictruth]

Yeah, the DGP was the only thing mild positive for me, and the gene was positive as well. My biopsy was negative after being gluten-free for almost a year, but I was back on it for 6 weeks.

My sibling has confirmed biopsy celiac and had NO positive blood work. He made a good point to me when I was going through the gluten challenge: You really do not get the celiac diagnosis until your gut is a total wreck. At some point, before then, your body starts producing antibodies and you may develop some          symptoms. The disease process starts somewhere.

[cyclinglady]

My DGP IGA result was the ONLY positive on my blood panel.  Yet biopsies revealed a Marsh Stage IIIB (moderate to severe damage.  Celiac experts admit it is easy to miss damaged areas during an endoscopy.  

Everyone else has given excellent advice!  

[flutegal64]

Listen to your body.  If it tells you your body doesn't react well to something then don't eat it.  It could be gluten intolerance which is more common.  If you have the extra money then why not get the genetic test (it's way cheaper than it used to be- I don't think it's $400 anymore like someone said above... for some reason I thought there was one for around $100 now?).  I never liked the idea of damaging one's intestines until you can get a positive Celiac test... at least genetic testing can tell you if it runs in the family then you can decide what road to pursue.
Also, your symptoms could describe a lot of other diseases too so keep up with a GI doctor.

[zenjess1980]

On Thursday, March 31, 2016 at 11:55 AM, Caparici said:

Hello all I'm very new to all this and I'm so confused.  My test results are in the picture attached.  I had a biopsy and it said that I didn't have villi atrophy but that there were signs of mild intestinal irritation and H. pylori bacteria was found,  so GI said it's not celiac disease .  I have terrible joint pain and my ears feel like they are full with constant dizziness/vertigo.  I know that the tTG test can be low when there hasn't been damage but the other two tests were so high.  Does this mean that I am or not Celiac?  Should I stop eating Gluten? I also had low vitamin D results and ferritin was low as well.  I'm not a big gluten eater as I'm seldom hungry to begin with so could this be what has helped me.  Last night I had a big bowl of pasta and woke up this morning so bloated and unwell.  Any one have tests like this and later was in fact gluten intolerant? Any response would be greatly appreciated.

Hello. I understand not believing a GI. Several years ago I had a celiac panel done with my internal medicine doctor, it came back positive. I had an endoscopy with my GI which came back negative, giving me an inconclusive answer. I ended up being diagnosed with non hodgkin lymphoma of the duodenum  (intestine) and was told gluten wasn't the culprit because my biopsy was negative (despite reading about the gluten-lymphoma connection.) I continued to eat gluten based on what my GI told me. I'm in remission now, saw a new doctor yesterday, and he believes if I'm not celiac I'm definitely gluten sensitive. Today is my 1st day gluten free. From what I've read, and experienced there's no harm in being gluten free. I know I'd rather be gluten-free by 'mistake ' than walk myself into further health problems. I have also learned I'm my own best advocate. Best wishes to you  

[SLLRunner]

2 hours ago, zenjess1980 said:

I'd rather be gluten-free by 'mistake ' than walk myself into further health problems. I have also learned I'm my own best advocate.

This.  Its better to be safe than sorry.

Once I'm done with this awful gluten challenge and done with all testing, I am going back to gluten free no matter what the results. I felt so much better. 

[Gemini]

3 hours ago, zenjess1980 said:

Hello. I understand not believing a GI. Several years ago I had a celiac panel done with my internal medicine doctor, it came back positive. I had an endoscopy with my GI which came back negative, giving me an inconclusive answer. I ended up being diagnosed with non hodgkin lymphoma of the duodenum  (intestine) and was told gluten wasn't the culprit because my biopsy was negative (despite reading about the gluten-lymphoma connection.) I continued to eat gluten based on what my GI told me. I'm in remission now, saw a new doctor yesterday, and he believes if I'm not celiac I'm definitely gluten sensitive. Today is my 1st day gluten free. From what I've read, and experienced there's no harm in being gluten free. I know I'd rather be gluten-free by 'mistake ' than walk myself into further health problems. I have also learned I'm my own best advocate. Best wishes to you  

You know....you DO have Celiac Disease.  No one develops lymphoma from being gluten sensitive, it occurs with full blown Celiac Disease that goes untreated or from being mistakenly told you do not have it after a negative biopsy. You had positive blood work and a negative biopsy.....that happens all the time to people, with good reason.  You just did not have enough damage at the time of biopsy for the GI to find it.  But the blood work tells all.

I am deeply sorry this happened to you and hope you stay strictly gluten free for life.  You need to be.  By doing so, your prognosis with the lymphoma will be much better.  This is the one that happens with Celiac so for the doc to say there is no connection is just downright medical malpractice.  I wish you good health for the future!

[zenjess1980]

8 hours ago, SLLRunner said:

This.  Its better to be safe than sorry.

Once I'm done with this awful gluten challenge and done with all testing, I am going back to gluten free no matter what the results. I felt so much better. 

Way to go!