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MK16

Still no definitive answers! Need advice!

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3 GI doctors, tests, biopsy and still inconclusive!  
I’ve been suffering for 2 yrs now and still no resolution.  I started with my primary dr with symptoms of bloating, gas, and 1x day diarrhea.  She ran blood work which showed my IGG high at 14 and my IGA low at <1.  The lab comments were “serological evidence for celiac disease is present.  Consider IGA deficiency”.  So referred  to  1st GI who said no celiac I think you have SIBO.  Breath test positive for SIBO.  After 3 rounds of different antibiotics and still a positive Breath test I decided to get a 2nd opinion.  Next GI dr said yes!  You have celiac!  But let’s do an upper endo to biopsy.  Biopsy came back negative.  So she said no it’s not Celiac.  
So now I’m totally confused and try a 3rd GI with all of my lab work.  He says maybe celiac and runs genetic celiac panel blood work.  That came back as me having category 3 DQ8 gene with a moderate risk.  See pic.  He said he doesn’t think it’s celiac, maybe IBS.  
So at this point I give up!   These are all reputable GI doctors!  
Can anyone give me their thoughts based off of my tests?  I’m not sure what a high IGG means?  
Thanks sooo much!!!

B3DB6F13-BC9C-427B-A849-37A95727E097.jpeg

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On 2/3/2018 at 7:23 AM, MK16 said:

3 GI doctors, tests, biopsy and still inconclusive!  
I’ve been suffering for 2 yrs now and still no resolution.  I started with my primary dr with symptoms of bloating, gas, and 1x day diarrhea.  She ran blood work which showed my IGG high at 14 and my IGA low at <1.  The lab comments were “serological evidence for celiac disease is present.  Consider IGA deficiency”.  So referred  to  1st GI who said no celiac I think you have SIBO.  Breath test positive for SIBO.  After 3 rounds of different antibiotics and still a positive Breath test I decided to get a 2nd opinion.  Next GI dr said yes!  You have celiac!  But let’s do an upper endo to biopsy.  Biopsy came back negative.  So she said no it’s not Celiac.  
So now I’m totally confused and try a 3rd GI with all of my lab work.  He says maybe celiac and runs genetic celiac panel blood work.  That came back as me having category 3 DQ8 gene with a moderate risk.  See pic.  He said he doesn’t think it’s celiac, maybe IBS.  
So at this point I give up!   These are all reputable GI doctors!  
Can anyone give me their thoughts based off of my tests?  I’m not sure what a high IGG means?  
Thanks sooo much!!!

B3DB6F13-BC9C-427B-A849-37A95727E097.jpeg

Why not trial a gluten free diet for six months?  Despite your negative biopsies, you have the potential (genes), and a positive on the celiac panel, which might indicate that you have Non-Celiac Gluten Sensitivity.  My hubby went Gluten Free per the advice of my allergist and his GP almost 20 years ago.  It worked.  The gluten free diet might help you too!  

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On 2/3/2018 at 9:23 AM, MK16 said:

3 GI doctors, tests, biopsy and still inconclusive!  
I’ve been suffering for 2 yrs now and still no resolution.  I started with my primary dr with symptoms of bloating, gas, and 1x day diarrhea.  She ran blood work which showed my IGG high at 14 and my IGA low at <1.  The lab comments were “serological evidence for celiac disease is present.  Consider IGA deficiency”.  So referred  to  1st GI who said no celiac I think you have SIBO.  Breath test positive for SIBO.  After 3 rounds of different antibiotics and still a positive Breath test I decided to get a 2nd opinion.  Next GI dr said yes!  You have celiac!  But let’s do an upper endo to biopsy.  Biopsy came back negative.  So she said no it’s not Celiac.  
So now I’m totally confused and try a 3rd GI with all of my lab work.  He says maybe celiac and runs genetic celiac panel blood work.  That came back as me having category 3 DQ8 gene with a moderate risk.  See pic.  He said he doesn’t think it’s celiac, maybe IBS.  
So at this point I give up!   These are all reputable GI doctors!  
Can anyone give me their thoughts based off of my tests?  I’m not sure what a high IGG means?  
Thanks sooo much!!!

B3DB6F13-BC9C-427B-A849-37A95727E097.jpeg

MK16,

I am not best on the test's but I will try  and explain.

see this new article about why both an tTG and IGa test is performed.

https://www.celiac.com/articles/25017/1/Is-a-One-Two-Punch-of-Anti-tTG-Tests-a-Reliable-Way-to-Diagnose-Celiac-Disease/Page1.html

but this doesn't work well in those who have  an IGa Insuffiency/Deficeincy and why they were trying to rule it out.

That said when your biopsy proved negative they said your test was a false positive.

People who meet this diagnostic criteria usually fall into the NCGS spectrum.  Which basically in lays men's terms.  They don't think you have Celiac yet?

why is not true . . .you are just in the  NCGS phase of  the disease in my opinion.

(This is controversial)

But I find it takes a little while for doctors/clinician's to keep with the latest research.

Dr. Hyman wrote on the HuffPost 5+ years why ago he thinks people in your case are truly Celiac's and not the more clinical unspecific NCGS diagnosis.

when he said "Positve is Positive"

Here is the HuffPost article read it for yourself to help you understand your test results but I will quote some of it for easy reference.

https://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html

quoting Dr. Hyman

"Intestinal biopsy (rarely needed if gluten antibodies are positive—based on my interpretation of the recent study)

When you get these tests, there are a few things to keep in mind.

In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant.

We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems."

And I believe this is what is happening in your case.

***** this is not medical advise but how I would interrupt your test results.

Many people on this forum/board has received a very similar diagnosis of NCGS . .. Ie. positive blood serology without a "Positive Biopsy" to confirm the clinical suspicion of a Celiac diagnosis.

The 2nd Endo is right!  "Positive is Positive"

quoting Dr. Hyman again and I agree!

"This is ground-breaking research that proves you don’t have to have full-blown celiac disease with a positive intestinal biopsy (which is what conventional thinking tells us) to have serious health problems and complications—even death—from eating gluten"

Yet 5+ years later and clinicians' are still not aware of this medical fact.

Still relying on diagnostic tests 50+ years old basing their decisions on the "Gold standard" of a biopsy confirmed diagnosis.

Even though new research confirms this (biopsy confirmed diagnosis) is not necessary today. . . in light of new and better tests than they had then when the biopsy confirmed diagnosis was necessary.

I hope this is helpful.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the Grace of God,

 

 

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