Possible Celiac?

[GF-Cate]

  On 6/16/2021 at 6:13 PM, CeliMomi said:

Biopsy came back negative. Should I push to have a DNA test?

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CeliMomi,

There are companies you can order a genetic test from directly if your doctor won't order for you or if it's pricey even with insurance. My family has used 

https://targeted-genomics.com/

but there are several others too. At $95, because we have a high insurance deductible, this was the most cost effective way in our case.

They send you a kit & prepaid mailer, you do 2 cheek swabs and you get your results online.

[GF-Cate]

Perhaps you can get her doctor to run the IgA anti-endomysial antibody test?

"The EMA test has a specificity of almost 100%, making it the most specific test for celiac disease, although it is not as sensitive as the tTG-IgA test." 

" It is usually reserved for difficult to diagnose patients."

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

U of Chicago Celiac Center describes it as "potential celiac" when a person has a positive EMA test but negative biopsy.

After exhausting your testing options & seeking a second opinion from another doctor, I would definitely recommend doing a gluten-free trial for your daughter for a good amount of time to see if it resolves symptoms. 

http://www.cureceliacdisease.org/faq/what-does-the-term-potential-celiac-mean/

Some hospitals will offer second opinions on cases remotely, so that might be worth checking out:

https://www.massgeneral.org/children/celiac-disease/provider-resources

https://www.cincinnatichildrens.org/service/c/celiac-disease

https://www.chop.edu/centers-programs/division-gastroenterology-hepatology-and-nutrition/second-opinions

https://www.chla.org/online-second-opinion

(These are just a few that offer this service- search children's hospitals in your area too for 2nd opinion options)

[CeliMomi]

  On 6/16/2021 at 7:21 PM, Scott Adams said:

I think celiac disease is still more likely, however, I do know that a doctor is unlikely to make this diagnosis given a negative biopsy. So where does this leave patients? In my brother's case, that was very similar to this, they told him "good news, no celiac disease so you don't have to go gluten-free!" This happens often, even with positive blood tests (and negative biopsy), or blood tests that are elevated but not over the marker for celiac disease. Gluten sensitivity is gluten sensitivity, not matter how you slice it, and the treatment for it is the same, a gluten-free diet.

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I was told by the doctor today that even if her DNA test showed the celiac related genes, she would NOT be given a celiac diagnosis due to the negative biopsy. Moving forward with a stool sample to check on the lower GI track for infection/inflammation/blood. 
He also said it is still not understood in the medical community as to why the DGP IgG is positive when celiac isn’t present. I asked him if we should go gluten free and he said we could try but he wasn’t convinced she had an issue with gluten. 

[Scott Adams]

I just posted this in another topic, but will repeat it here:

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since ~12% of people are gluten sensitive and only ~1% have celiac disease, the current screening for celiac disease won't necessarily detect those in the gluten sensitive category, so negative tests for celiac disease may actually cause many sensitive people to keep eating gluten, when they really should not. Scientists are working on tests for non-celiac gluten sensitivity, but currently there are none available.

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Ask your doctor these questions:

1) Do you know that non-celiac gluten sensitivity is, and can you test my daughter for it?

2) Given the positive DGP test how can you exclude celiac disease, as this test is considered to be VERY SPECIFIC for it?

3) My understanding is that the area where the samples are taken would cover a football field if flattened out. Is it possible the gastroenterologist took too few samples (a minimum of 4 are recommended), or took them in the wrong places?

4) Is it possible that if she keeps eating gluten she WILL get villi damage later in life, along with many other health issues associated with celiac disease, and that we've just caught it early?

5) How do you explain the autoimmune reaction to gluten that is occurring in my daughter now, which has been measured by the DPG test?

I'd love to hear their answers.

[CeliMomi]

  On 6/17/2021 at 5:18 PM, Scott Adams said:

I just posted this in another topic, but will repeat it here:

Ask your doctor these questions:

1) Do you know that non-celiac gluten sensitivity is, and can you test my daughter for it?

2) Given the positive DGP test how can you exclude celiac disease, as this test is considered to be VERY SPECIFIC for it?

3) My understanding is that the area where the samples are taken would cover a football field if flattened out. Is it possible the gastroenterologist took too few samples (a minimum of 4 are recommended), or took them in the wrong places?

4) Is it possible that if she keeps eating gluten she WILL get villi damage later in life, along with many other health issues associated with celiac disease, and that we've just caught it early?

5) How do you explain the autoimmune reaction to gluten that is occurring in my daughter now, which has been measured by the DPG test?

I'd love to hear their answers.

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1) he said there isn’t a test for gluten sensitivity

2) he said the DGP IgG is the least sensitive and most unreliable and is ruling out celiac as a cause of her symptoms 

3) didn’t ask originally so I can only assume what his answer would be

4) he said we could try a gluten free diet but he wasn’t convinced it would make a difference 

5) he said the test must have been a false positive and was unsure as to why her body is having that reaction

To say I’m frustrated is an understatement 

[Scott Adams]

Your doctor is correct when they say the DPG IgG test isn't as sensitive as TTG tests, and the table in this publication shows that in a systematic review in children it is 80.1 to 98.6 sensitive, and is 86.0 to 96.9 specific. It also shows a mixed study under "other" were it was shown to be 95% sensitive and 99% specific. Also: "In this review, sensitivity and specificity were considered 'good' if at least 70.0 percent, 'very good' if from 80.0 to 89.9 percent, and 'excellent' if 90.0 percent or greater." https://effectivehealthcare.ahrq.gov/products/celiac-disease/clinician

There is not doubt that this test is very specific to a reaction to gluten, and this test is, as far as I know, not prone to false positives--it's more prone to false negatives as it is "Not as sensitive as tTG IgA tests in patients who are not IgA deficient."

It does concern me that your doctor wants to claim that something else is causing this positive result, and seems to be so dismissive of a gluten-free diet. 

[Scott Adams]

PS - Ask your doctor what the rate of false positive results is for the DPG IgG test. They are making this claim...time to back it up.

[CeliMomi]

  On 6/17/2021 at 6:14 PM, Scott Adams said:

PS - Ask your doctor what the rate of false positive results is for the DPG IgG test. They are making this claim...time to back it up.

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I am just as concerned as you are. I truly don’t think he is a reliable source of information when it comes to celiac. When I told his nurse we were going to go gluten free anyways she told me to wait until we could get a DNA test. I asked why and she said it could change the results. I said “since when can your diet change your inherited genes??”  She then became agitated with me and said I should wait until she could confirm with the doctor. Needless to say, she was incorrect. 
 

[trents]

  On 6/17/2021 at 4:50 PM, CeliMomi said:

I was told by the doctor today that even if her DNA test showed the celiac related genes, she would NOT be given a celiac diagnosis due to the negative biopsy. 

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It is true that just having the celiac genes does not mean you have or will develop celiac disease. It just speaks to potential. Most people who have the genes never develop celiac disease. It takes both the genes and some triggering event such as a viral infection to move from the latent potential for celiac disease to the active expression of it.

[Posterboy]

  On 6/17/2021 at 4:50 PM, CeliMomi said:

He also said it is still not understood in the medical community as to why the DGP IgG is positive when celiac isn’t present. I asked him if we should go gluten free and he said we could try but he wasn’t convinced she had an issue with gluten. 

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CeliMomi,

My money is on Casein!!!

Here is a nice article about it.

Here is another article that might help you

Entitled "Anti-tissue transglutaminase antibodies not related to gluten intake" IE Due to Cows Milk Protein (CMP)....more Correctly Casein allergy in Celiac Disease.

https://www.sciencedirect.com/science/article/pii/S2341287918301601

They concluded quoting their conclusion.

"CMP ingestion after an exclusion diet can induce an increase in anti-tTG in some coeliac subjects. CMP (aka Casein) can produce this immune response if there were no gluten transgressions...."

And here is a another one

Entitled "Antibodies against Food Antigens in Patients with Autistic Spectrum Disorders"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3747333/

That shows both Casein and Gluten can be triggers for elevated antibodies....

quoting from the abstract....

"Casein IgG titers resulted to be more frequently and significantly higher in ASDs than in controls. Intestinal permeability was increased in 25.6% of ASDs compared to 2.3% of healthy children. Systemic antibodies production was not influenced by paired/impaired intestinal permeability. Conclusions. Immune system of a subgroup of ASDs is triggered by gluten and casein; this could be related either to AGA, DPG, and Casein IgG elevated production or to impaired intestinal barrier function.

I hope this is helpful but it is not medical advice.

Posterboy,

[Beverage]

Seriously, I'd just get a different doctor. A negative biopsy is NOT conclusive of no Celiac's, as it is too easy to miss. And biopsy is going more and more as not required, especially for children.