Some advice please - newbie

[M4RK]

Hi all, I genuinely apologise for going over something that has probably been visited a million times on this forum but I’m ever so confused right now. My nearly-13 yr old daughter has been complaining of bloating and inconsistent bowel movements for a couple of months on and off (no other symptoms) and it was suggested by her GP that she had a “full screening” of bloods taken, which we did around a month ago. I was present with her (I’m dad) when they were done and the nurse took 5 full vials out of her vein. Then last week our GP phoned me to talk me through the results (this is where it gets a little confusing - for me). 
 

he said that all of the tests were normal but one. And this one test showed that “she may have an intolerance to gluten” although it wasn’t conclusive. Then he apologised that the locum nurse hadn’t done the main test for celiac disease and that she’d have to go back in to have it done. Which i was a bit cross about has my daughter has quite a serious needle phobia (that’s not a complaint, it’s just annoying). 

 

so I guess my questions are, what was the test that they did that could indicate a gluten issue if it wasn’t the gold standard for celiacs disease, and secondly, what does this mean? That she probably does have it? Or I’m none the wiser until we get this next blood test done?

 

I appreciate in advance any opinions, I’m not at all previous so don’t hesitate to call me an idiot if I’m mistaken or behaving foolish.
 

thank you for reading.
 

have a nice evening.  
 

Mark. 

[M4RK]

Just to give you some info that I got from her printed out blood test results. Everything seems normal apart from one result which was “Mean Cell Haemoglobin Concentration” with a comment “above the recommended range” 

 

should be 29-36 g/dl

is actually 36.2 g/dl

 

how could this indicate celiac disease?

 

thanks. 

[trents]

M4RK, welcome to the forum!

First of all, specifically, what was the name of the one positive test the physician spoke of? Do you have that information and can you post the result value along with the reference ranges for negative vs. positive? Different labs used different standards so the raw number without reference ranges is not helpful.

Second, the one serum antibody test most commonly ordered by physicians when checking for celiac disease is the tTG-IGA. It combines good sensitivity with good specificity. I suspect this one was left out and that is what the doctor was apologizing for. When the tTG-IGA is ordered, a "total serum IGA" test should also be ordered since low total IGA can skew the tTG-IGA toward the negative range. Since the immune systems of some people react atypically to the presence of celiac disease, there are other tests that can be ordered that may catch the presence of the disease when it is missed by the tTG-IGA. Here is a primer for blood tests that can be run for celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Many physicians will follow up the serum antibody testing with an endoscopy/biopsy to check for damage to the villi that line the small bowel. This is the hallmark of celiac disease. The autoimmune response to the ingestion of gluten produces inflammation that damage the villi. Biopsies are done to gather samples of the small bowel lining and this is then sent off to a lab for microscopic inspection.

It is very critical that your daughter continue to eat regular amounts of gluten-containing grains (wheat, barley and rye) until all testing is complete. Beginning a gluten-free diet too early will invalidate the testing.

There is also another gluten-related disorder that shares many of the same symptoms with celiac disease but does not damage the villi. It is know as NCGS (Non Celiac Gluten Sensitivity). There is no test for it. Celiac disease must first be ruled out.

[trents]

6 minutes ago, M4RK said:

Just to give you some info that I got from her printed out blood test results. Everything seems normal apart from one result which was “Mean Cell Haemoglobin Concentration” with a comment “above the recommended range” 

 

should be 29-36 g/dl

is actually 36.2 g/dl

 

how could this indicate celiac disease?

 

thanks. 

The exact terminology is not what I'm used to but it probably has to do with checking for iron deficiency anemia. As I said earlier, celiac disease damages the small bowel villi (duodenum and duodenum bulb). This area of the intestinal track is where essentially all nutrition is absorbed. When the villi are damaged this causes impairment in nutrient absorption, including iron and sometimes also vitamin B12 which is necessary for the assimilation of iron.

[M4RK]

58 minutes ago, trents said:

The exact terminology is not what I'm used to but it probably has to do with checking for iron deficiency anemia. As I said earlier, celiac disease damages the small bowel villi (duodenum and duodenum bulb). This area of the intestinal track is where essentially all nutrition is absorbed. When the villi are damaged this causes impairment in nutrient absorption, including iron and sometimes also vitamin B12 which is necessary for the assimilation of iron.

Sorry Trents for some reason my replies to your post aren’t publishing properly. Thank you for the time it took you to respond to my concerns. It’s much appreciated. 
 

the bit that confuses me most about the MCHC values is that only a lower than normal value would indicate an iron anaemia. And my daughters is higher than normal. (As far as google tells me anyway)

 

it’s just seems there’s nothing obvious from the bloods that shouts celiac to me (I’m definitely not a doctor mind you)

 

maybe it’s because we presented to the GP with symptoms that relate to celiac disease (bloating, diarrhoea etc) that swayed his opinion or meant he went looking for anything that would indicate an abnormality. 
 

I don’t know. She has the proper test on Thursday this week anyway, so that should shed some light on everything. 
 

thanks again

[Russ H]

1 hour ago, M4RK said:

Just to give you some info that I got from her printed out blood test results. Everything seems normal apart from one result which was “Mean Cell Haemoglobin Concentration” with a comment “above the recommended range” 

 

should be 29-36 g/dl

is actually 36.2 g/dl

 

how could this indicate celiac disease?

 

thanks. 

Hello M4RK,

That MCHC is only just outside the standard range and could just be a spurious result. It may be that there are some values which are within the standard range but suspicious, especially for a youngster. Out of curiosity, did they test serum ferritin and iron?

[trents]

4 minutes ago, M4RK said:

Sorry Trents for some reason my replies to your post aren’t publishing properly. Thank you for the time it took you to respond to my concerns. It’s much appreciated. 
 

the bit that confuses me most about the MCHC values is that only a lower than normal value would indicate an iron anaemia. And my daughters is higher than normal. (As far as google tells me anyway)

 

it’s just seems there’s nothing obvious from the bloods that shouts celiac to me (I’m definitely not a doctor mind you)

 

maybe it’s because we presented to the GP with symptoms that relate to celiac disease (bloating, diarrhoea etc) that swayed his opinion or meant he went looking for anything that would indicate an abnormality. 
 

I don’t know. She has the proper test on Thursday this week anyway, so that should shed some light on everything. 
 

thanks again

High MCHC values can be caused by inflammatory processes that cause clumping of blood cells.

From some of your spellings I gather you are in the UK. I don't know how much say you have there in what the doctor orders for tests but for celiac disease diagnosis but I would recommend a minimum of the tTG-IGa, total serum IGA and the Deamidated gliadin peptide (DGP IgA and IgG). The celiac community will vouch for me when I say this: Our collective experience is that general practitioners are typically pretty ignorant when it comes to diagnosing celiac disease. It is advisable to go to appointments armed with knowledge and a willingness to be appropriately assertive in order to see that proper tests are run.

[M4RK]

8 minutes ago, Russ314 said:

Hello M4RK,

That MCHC is only just outside the standard range and could just be a spurious result. It may be that there are some values which are within the standard range but suspicious, especially for a youngster. Out of curiosity, did they test serum ferritin and iron?

Hi Russ, they didn’t test for ferritin or iron. Would that usually be part of a full blood count? This seems pretty extensive what they have done

[Russ H]

9 minutes ago, trents said:

High MCHC values can be caused by inflammatory processes that cause clumping of blood cells.

From some of your spellings I gather you are in the UK. I don't know how much say you have there in what the doctor orders for tests but for celiac disease diagnosis but I would recommend a minimum of the tTG-IGa, total serum IGA and the Deamidated gliadin peptide (DGP IgA and IgG). The celiac community will vouch for me when I say this: Our collective experience is that general practitioners are typically pretty ignorant when it comes to diagnosing celiac disease. It is advisable to go to appointments armed with knowledge and a willingness to be appropriately assertive in order to see that proper tests are run.

Good luck with that! The GP will follow NICE guidelines which are for tTG-IgA and total IgA. If tTG-IgA is borderline they will request an EMA test to follow up.

Edited June 7, 2022 by Russ314
spelling

[M4RK]

9 minutes ago, trents said:

High MCHC values can be caused by inflammatory processes that cause clumping of blood cells.

From some of your spellings I gather you are in the UK. I don't know how much say you have there in what the doctor orders for tests but for celiac disease diagnosis but I would recommend a minimum of the tTG-IGa, total serum IGA and the Deamidated gliadin peptide (DGP IgA and IgG). The celiac community will vouch for me when I say this: Our collective experience is that general practitioners are typically pretty ignorant when it comes to diagnosing celiac disease. It is advisable to go to appointments armed with knowledge and a willingness to be appropriately assertive in order to see that proper tests are run.

Ok Trents, thank you again. I’ll see what comes back from Thursdays appointment and follow up accordingly. 

Just now, Russ314 said:

Good luck with that! The GP will follow NICE guidelines which are for tTG-IgA and total IgA. If tTG-IgA is borderline they will request an EMA test to follow up.

What’s an EMA test?

[trents]

"IgA Endomysial antibody (EMA): 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. 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."

This comes from the article I linked in my first response.

By the way, NCGS is 10-12x more common than celiac disease.

Edited June 7, 2022 by trents

[Wheatwacked]

What does a high MCHC mean?

Celiac Disease causes vitamin deficiencies. B12, vitamin C and folate and probably choline. In general the range is "A normal MCHC level for an adult is 31-37 grams per deciliter (g/dL)." although it can vary depending on the lab.

Let's see what the new test results are, it could be just not enough in her diet.

Did they take vitamin D and homocysteine and what are they? Do not panic but do be concerned. If Celiac is excluded it could be Non Celiac Gluten Sensitivity so it is nice her doctor is not just blowing you off and that he apologized.

[Russ H]

7 minutes ago, M4RK said:

Hi Russ, they didn’t test for ferritin or iron. Would that usually be part of a full blood count? This seems pretty extensive what they have done

It was just a guess. They sound like they are acting diligently.