Interpreting test results

[RMJ]

35 minutes ago, trents said:

Some would say that normal = zero. In other words, even small numbers indicate inflammation is going on. 

Do you have any scientific references for that statement? I have not heard that before.

I used to develop tests for antibodies, although not for celiac disease.  Results are rarely reported as zero, low results are reported as <X, where X is either the limit of detection or the limit of quantitation.

For development of the original celiac antibody tests, normal was defined by comparing antibody results with biopsy results and choosing an antibody level cutoff where most normals were below the line and most with celiac above the line. There were plenty of people who were negative for celiac per biopsy who had antibody results above the limit of detection.

Subsequent celiac antibody test development either compared biopsy results to antibodies or antibodies in a new test to antibodies in an FDA authorized test.

Sorry for the sidetrack.  Sometimes the scientist in me just has to speak out.

 

[deanna1ynne]

5 minutes ago, RMJ said:

Do you have any scientific references for that statement? I have not heard that before.

I used to develop tests for antibodies, although not for celiac disease.  Results are rarely reported as zero, low results are reported as <X, where X is either the limit of detection or the limit of quantitation. 

 

This would make sense to me, because three of my results had “< 0.X” results, so I just figured it was the limits of what could be detected. 

 

[trents]

RMJ, I was just extrapolating on what I have heard Scott say about antibody numbers below the cutoff line for positive, or at least what I understood him to say. He never said normal = zero but he has said that small numbers near the cutoff line may still indicate a celiac process is going on. I respect Scott's opinion in these matters since he has been involved with celiac disease for a long time in a larger way than most people.

Edited October 24, 2021 by trents

[Eugenia Carvalho]

1 hour ago, RMJ said:

Is this for a child or adult, and what country or part of the country?

I'm sure here awareness is very low between doctors, my country is Portugal. 

I need a good doctor for my child.

Second I would like to improve awareness , I still don't know how...here it seems that it as become a fashion not a real disease. Also because it differs a lot from person to person...

[trents]

1 hour ago, Eugenia Carvalho said:

. . . here it seems that it as become a fashion not a real disease. Also because it differs a lot from person to person...

That is true in the USA as well.

[RMJ]

3 hours ago, Eugenia Carvalho said:

I'm sure here awareness is very low between doctors, my country is Portugal. 

I need a good doctor for my child.

Second I would like to improve awareness , I still don't know how...here it seems that it as become a fashion not a real disease. Also because it differs a lot from person to person...

I would recommend starting a new topic, with a title something like “Need pediatric celiac specialist in Portugal” to attract answers. 

I see that there is a Portuguese celiac association, that might be a place to start.

Portugal Celiac Association

[Eugenia Carvalho]

6 hours ago, RMJ said:

I would recommend starting a new topic, with a title something like “Need pediatric celiac specialist in Portugal” to attract answers. 

I see that there is a Portuguese celiac association, that might be a place to start.

Portugal Celiac Association

I'm sorry but Portugal Association doesn't recomend doctors and it's very attached to the classic form of celiac, also doctors b ecause new blood scopes are not available here. 

So there i'snt more treined doctors here in Portugal, maybe Spain. My daugther made the genetic test using saliva there. 

[Wheatwacked]

15 hours ago, deanna1ynne said:

his other struggles: low energy / fatigue, inflammation / back problems / nerve issues, some GI issues (needing to run for the bathroom at times), ADHD

My son was diagnosed by biopsy when he was 6 months old in 1976.  I stayed in denial till I was 63. Once I started GFD my sleep apnea, back pain improved (no longer need a new bed), prostate hypertrophy (diagnosed in 1973) shrank. Brain fog lifted (I was getting dumber by the day) during a TV comercial I could not tell you what show I was watching.  ADHD improved, I was started on coffee in fifth grade.  Foot problems SLOWLY improving.  once I saw my actual vitamin intake levels (that's what the spreadsheet was for) and corrected them my energy is improving, gut problems are all but gone, as is my sensitivity to cross contamination.  There are more than 200 symptoms that have shown improvement on GFD https://medivizor.com/blog/2016/10/19/celiac-disease/.  I'll take a guess that your husband's vitamin D plasma level is above 44 ng/ml and that is helping to mitigate his autoimmune response. New research is showing that Low D  seems to be a common denominator to numerous autoimmune diseases, despite that mainstream medicine wants us to believe it is only important for rickets and osteomalsia.

[deanna1ynne]

On 10/14/2021 at 2:13 PM, trents said:

In your case, since your daughter seems to not be having dramatic symptoms anymore while consuming gluten, I would keep her on it until that appointment in case the doc wants to do a scope and biopsy.

Having said that, no one, even most physicians I believe, would be unwilling to conclude that your daughter has celiac disease in view of her strong antibody test positives, even though they still might have wanted to do the scoping. So, if you felt it prudent to begin the gluten free effort now it would not likely be a mistake.

So, our doc (celiac specialist) is TOTALLY willing to diagnose my most uncomfortable child on blood results alone - he just wants to repeat the blood tests and add an EMA test to the panel she had before. YEA!!

But she is very scared that if she doesn't get a biopsy now, she'll have to repeat a gluten challenge at some point in the future, if someone doubts her "official diagnosis" without a biopsy. She is convinced that having to gluten herself again in the future would be about the most dreadful thing in the world and says she might prefer the biopsy now just to be 100% that her dx will be considered legit.

I'm wondering if you have any thoughts on this?

[trents]

13 minutes ago, deanna1ynne said:

So, our doc (celiac specialist) is TOTALLY willing to diagnose my most uncomfortable child on blood results alone - he just wants to repeat the blood tests and add an EMA test to the panel she had before. YEA!!

But she is very scared that if she doesn't get a biopsy now, she'll have to repeat a gluten challenge at some point in the future, if someone doubts her "official diagnosis" without a biopsy. She is convinced that having to gluten herself again in the future would be about the most dreadful thing in the world and says she might prefer the biopsy now just to be 100% that her dx will be considered legit.

I'm wondering if you have any thoughts on this?

Like who? Once it's in her medical chart it's official. And if her "celiac specialist" doc is willing to do that, I don't see the need for a biopsy given her strong antibody positives.

[deanna1ynne]

20 minutes ago, trents said:

Like who? Once it's in her medical chart it's official. And if her "celiac specialist" doc is willing to do that, I don't see the need for a biopsy given her strong antibody positives.

Good to know. I was following a fb group on celiac kids and someone whose husband worked in the medical field said that they knew the "inside" of the insurance industry enough to "know" that the dx may not be considered official without a biopsy. That made me nervous! lol. But she is just SO ready to be DONE. We have another appt tomorrow for two of my other kids, and we said we'd decide about the biopsy by then.

[trents]

Actually, it is possible that your insurance rates will go up if there is an official diagnosis since, statistically speaking, there are other health problems and higher morbidity rates associated with celiac disease. However, follow-up blood tests or endoscopies to check for healing progress once the gluten-free diet is begun might need an official diagnosis in order to be covered by insurance.

Edited November 17, 2021 by trents

[deanna1ynne]

On 11/16/2021 at 5:32 PM, trents said:

Actually, it is possible that your insurance rates will go up if there is an official diagnosis since, statistically speaking, there are other health problems and higher morbidity rates associated with celiac disease. However, follow-up blood tests or endoscopies to check for healing progress once the gluten-free diet is begun might need an official diagnosis in order to be covered by insurance.

Whelp, all three girls ended up with endoscopies, two because they didn't hit the 10X threshold, one because she wanted to do it while she was eating gluten already anyway. But I guess we'll wait and see, because the GI doc who performed them said that, at least visually, everything looks perfectly healthy. She did qualify it with "it's certainly possible to have a positive biopsy, still," but I find myself anxious now; what would it mean for us if the child who meets the EU criteria for dx without a biopsy actually gets a negative biopsy? I have no idea. 

[plumbago]

18 minutes ago, deanna1ynne said:

what would it mean for us if the child who meets the EU criteria for dx without a biopsy actually gets a negative biopsy? I have no idea. 

Is it possible that it would mean that your child has celiac disease but no damage has been demonstrated based on the biopsies so far?

[deanna1ynne]

1 minute ago, plumbago said:

Is it possible that it would mean that your child has celiac disease but no damage has been demonstrated based on the biopsies so far?

That would be great for them, I think?! And it would make sense, given that the 8 yo was more-or-less gluten-free for the five years before we had her tested (she's been on gluten again for two months now). Gosh, it's going to be hard work to just wait on the biopsy results themselves and not wring myself into a mess imaging "what-if" scenarios. lol. 

[deanna1ynne]

17 hours ago, deanna1ynne said:

Whelp, all three girls ended up with endoscopies, two because they didn't hit the 10X threshold, one because she wanted to do it while she was eating gluten already anyway. But I guess we'll wait and see, because the GI doc who performed them said that, at least visually, everything looks perfectly healthy. She did qualify it with "it's certainly possible to have a positive biopsy, still," but I find myself anxious now; what would it mean for us if the child who meets the EU criteria for dx without a biopsy actually gets a negative biopsy? I have no idea. 

Well, moot point, now. Her biopsy said marsh classification type 3c. It's crazy for me to think of how much damage that is, given that she was gluten free for 5 years (not 100%, but I'd guess a solid 99.5% - occasional things like soy sauce slipping in), and she's only been eating gluten again for two months.

[trents]

Sometimes there's more there than meets the eye. Unfortunately, there are times when GI docs doing scopes neglect to take a biopsy and tell patients, "The villi looked normal to me."

[deanna1ynne]

42 minutes ago, trents said:

Sometimes there's more there than meets the eye. Unfortunately, there are times when GI docs doing scopes neglect to take a biopsy and tell patients, "The villi looked normal to me."

That really is unfortunate! I can hardly imagine a greater disparity than what my 8 year old got with "everything looks really healthy!" on the scope vs. marsh type 3c "Complete Villous Blunting" on the actual biopsy.