New here, help with test results needed

[MasieE]

Tissue Transglutaminase IGA 

range 0-10.9, 7-10u/ml = borderline >10u/ml = positive 

Result was 11 u/ml

IGA normal range (0.80. -2.80)

Result was 0.67 g/l

Endomysial antibody IGA level

Result was positive.

 

So I’m thinking this all seems clear-cut. This is for my 16 year old. Posting with permission. Is there a chance to skip the endoscopy with these results? No gastro symptoms but low iron (not anemia), slightly low vit D. All other vitamins tested within reference range.
 

Also there is a 3 month wait list for appointment. Could we just switch to gluten-free now? Seems a long time to wait & potentially make him more ill, goes right against my parenting instincts. Feeling v anxious about all this so please kind words needed x

Thank you 😊

 

 

[cristiana]

1 hour ago, MasieE said:

Tissue Transglutaminase IGA 

range 0-10.9, 7-10u/ml = borderline >10u/ml = positive 

Result was 11 u/ml

IGA normal range (0.80. -2.80)

Result was 0.67 g/l

Endomysial antibody IGA level

Result was positive.

 

So I’m thinking this all seems clear-cut. This is for my 16 year old. Posting with permission. Is there a chance to skip the endoscopy with these results? No gastro symptoms but low iron (not anemia), slightly low vit D. All other vitamins tested within reference range.
 

Also there is a 3 month wait list for appointment. Could we just switch to gluten-free now? Seems a long time to wait & potentially make him more ill, goes right against my parenting instincts. Feeling v anxious about all this so please kind words needed x

Thank you 😊

 

 

Hi Maisie and welcome to the forum.

Can I ask which country you are posting from?  Reason being, you are talking about a 3 month weight and that sounds very much like the NHS waiting time.

Anyway, in some countries in the world, including the UK where I live, a confirmed coeliac diagnosis should mean that your son will be entitled to a lot of important health support.  In the UK, this includes:

• referral to an NHS nutritionist
• an annual health review of blood tests with a gastroenterologist,  to check for dietary compliance and other possible health complications which can sometimes affect coeliacs
• a DEXA scan, as osteoporosis and its precursor, osteopenia, can affect coeliacs
• depending on your local health authority, prescriptions for gluten free staples

If it does turn out that your son has coeliac disease, it will be a life-long journey, until a cure is found for the disease.  The diet is a huge commitment - the long term benefits are definitely worth it, but it would be a big sacrifice to make if it wasn't absolutely necessary.  That might be another reason why it would be good to have some certainty.

If your GP has referred you for an endoscopy, your son needs to continue eating gluten (about the equivalent of 2 slices of glutinous bread) until the procedure.   I realise this is a very difficult thing to do if it is making him very ill, though.  

[Just asking a fellow mod a question here.  @trents  How many weeks does gluten need to be eaten before an endoscopy, if someone in this position wanted to go gluten free for a bit before the endoscopy?]

One other thought OP:  if you can afford it, you may be able to have the referral and endoscopy done privately much quicker. It might be something worth looking into.

 

 

[MasieE]

3 minutes ago, cristiana said:

Hi Maisie and welcome to the forum.

Can I ask which country you are posting from?  Reason being, you are talking about a 3 month weight and that sounds very much like the NHS waiting time.

Anyway, in some countries in the world, including the UK where I live, a confirmed coeliac diagnosis should mean that your son will be entitled to a lot of important health support.  In the UK, this includes:

• referral to an NHS nutritionist
• an annual health review of blood tests with a gastroenterologist,  to check for dietary compliance and other possible health complications which can sometimes affect coeliacs
• a DEXA scan, as osteoporosis and its precursor, osteopenia, can affect coeliacs
• depending on your local health authority, prescriptions for gluten free staples

If it does turn out that your son has coeliac disease, it will be a life-long journey, until a cure is found for the disease.  The diet is a huge commitment - the long term benefits are definitely worth it, but it would be a big sacrifice to make if it wasn't absolutely necessary.  That might be another reason why it would be good to have some certainty.

If your GP has referred you for an endoscopy, your son needs to continue eating gluten (about the equivalent of 2 slices of glutinous bread) until the procedure.   I realise this is a very difficult thing to do if it is making him very ill, though.  

[Just asking a fellow mod a question here.  @trents  How many weeks does gluten need to be eaten before an endoscopy, if someone in this position wanted to go gluten free for a bit before the endoscopy?]

One other thought OP:  if you can afford it, you may be able to have the referral and endoscopy done privately much quicker. It might be something worth looking into.

 

 

Thanks 😊 yes in UK. I’ve looked at private but it’s way beyond my means. If I somehow managed it (v unlikely) would we still get all that help from NHS afterwards? 
 

These results look positive- I’m just wondering if endoscopy necessary? He’s had a beyond horrible year. Just thinking out loud. 

[trents]

The guidelines for a pre-biopsy "gluten challenge" are 2 slices of wheat bread daily (or the gluten equivalent) for two weeks leading up the day of the scoping and the biopsy, per the Mayo Clinic. But we are rethinking all that as it appears the amount and or the length of gluten exposure may need to be greater to get consistently accurate results.

[MasieE]

5 minutes ago, trents said:

The guidelines for a pre-biopsy "gluten challenge" are 2 slices of wheat bread daily (or the gluten equivalent) for two weeks leading up the day of the scoping and the biopsy, per the Mayo Clinic. But we are rethinking all that as it appears the amount and or the length of gluten exposure may need to be greater to get consistently accurate results.

Thanks, looks like advice is to wait. We may experiment with some gluten-free foods to replace favourites so it’s not a terrible overnight shock though.

[cristiana]

@trents  Thanks, Trents, I'm thinking the same - I've always felt slightly wary of the two weeks recommendation, not based on science, it just seems a bit short to me!

@MasieE  I would double check with your doctor/gastroenterologist's office, but I was diagnosed privately and then my consultant said I could be put back into the NHS for my aftercare.  In fact, when I asked BUPA if they would cover the aftercare they said no, only the diagnosis, so I suspect this isn't an uncommon thing to do.  Another good resource is Coeliac UK, I remember they were very helpful when I was diagnosed, I believe they still have a helpline you can call.

[MasieE]

1 minute ago, cristiana said:

@trents  Thanks, Trents, I'm thinking the same - I've always felt slightly wary of the two weeks recommendation, not based on science, it just seems a bit short to me!

@MasieE  I would double check with your doctor/gastroenterologist's office, but I was diagnosed privately and then my consultant said I could be put back into the NHS for my aftercare.  In fact, when I asked BUPA if they would cover the aftercare they said no, only the diagnosis, so I suspect this isn't an uncommon thing to do.  Another good resource is Coeliac UK, I remember they were very helpful when I was diagnosed, I believe they still have a helpline you can call.

Great thank you, that’s good to know. I’m finding all this quite overwhelming. The doctor has just made a referral but I don’t know if the endoscopy will be done on that first appointment? I’m thinking they will just review stuff and then make appointment for endoscopy. So even more time. Will certainly try to check a few of these things with the doctor. Thanks 🙏 

[cristiana]

2 hours ago, MasieE said:

Great thank you, that’s good to know. I’m finding all this quite overwhelming. The doctor has just made a referral but I don’t know if the endoscopy will be done on that first appointment? I’m thinking they will just review stuff and then make appointment for endoscopy. So even more time. Will certainly try to check a few of these things with the doctor. Thanks 🙏 

I suspect your first hospital appointment will be to review the blood test results with the consultant and to run through what the next step is, but again you can check this with the local hospital.

And sorry - to clarify:

If your GP has referred you for an endoscopy, your son needs to continue eating gluten (about the equivalent of 2 slices of glutinous bread DAILY) until the procedure.  I left the 'daily' bit out!

Take care and do come back to us if you have any more questions.

[Scott Adams]

His two positive results look pretty clear cut that he likely has celiac disease. 

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[MasieE]

12 hours ago, Scott Adams said:

His two positive results look pretty clear cut that he likely has celiac disease. 

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

Hi Scott,

Thanks for your reply. I’m mulling over the IGA deficiency because that has been flagged. What other tests would they need to do? Would those tests affect the outcome of the positive tests? My understanding from reading above is that it’s more relevant to a false-negative. 
 

Thanks 😊 

[MasieE]

1 minute ago, MasieE said:

Hi Scott,

Thanks for your reply. I’m mulling over the IGA deficiency because that has been flagged. What other tests would they need to do? Would those tests affect the outcome of the positive tests? My understanding from reading above is that it’s more relevant to a false-negative. 
 

Thanks 😊 

Sorry I understand what you’re saying. In fact his test was IgA deficient so I’m assuming it’s even more likely to add weight to his 2 positive tests. Overall I think this was why I thought it might not be necessary to do biopsy & just go straight to gluten free. The sooner the better as I’m worried about the months of waiting.

[Scott Adams]

If someone has low IgA it can cause false negative results on tests that use IgA, for example tTG-IgA, but IgA deficiency would not cause false positive results. What this means is that his tTG-IgA score would likely be even higher if he were not IgA deficient. I hope that makes sense. 

If his tTG-IgA had been below the cut off for celiac disease, then we might be able to call it a false negative result, and recommend more tests, for example the DPG tests, however, since the tests both came out positive it's doubtful that more blood tests are needed, but your doctor may want to schedule a biopsy/endoscopy to confirm a celiac disease diagnosis. If this is the case then he should continue eating gluten daily until all celiac disease tests are completed. 

[MasieE]

12 hours ago, Scott Adams said:

If someone has low IgA it can cause false negative results on tests that use IgA, for example tTG-IgA, but IgA deficiency would not cause false positive results. What this means is that his tTG-IgA score would likely be even higher if he were not IgA deficient. I hope that makes sense. 

If his tTG-IgA had been below the cut off for celiac disease, then we might be able to call it a false negative result, and recommend more tests, for example the DPG tests, however, since the tests both came out positive it's doubtful that more blood tests are needed, but your doctor may want to schedule a biopsy/endoscopy to confirm a celiac disease diagnosis. If this is the case then he should continue eating gluten daily until all celiac disease tests are completed. 

Ok thank you, makes sense.

M

[glutenmaestro]

Might be worth considering getting the HLA-DQ celiac gene test for your daughter, yourself and her immediate family. If your daughter tests positive for DQ2.5, it is much more likely that together with her TTG result she has celiac disease. If she tests negative for DQ2.5, DQ2.2, DQ8 and DQ7.5, celiac disease is unlikely but not impossible. 

Also, IgA deficiency is more common among those with celiac disease than the general population (though the majority of celiacs have normal total IgA). Secretory IgA is critical for defence against unwanted microbes. It might be worth checking for giardia and other stool pathogens just in case.

[MasieE]

4 hours ago, glutenmaestro said:

Might be worth considering getting the HLA-DQ celiac gene test for your daughter, yourself and her immediate family. If your daughter tests positive for DQ2.5, it is much more likely that together with her TTG result she has celiac disease. If she tests negative for DQ2.5, DQ2.2, DQ8 and DQ7.5, celiac disease is unlikely but not impossible. 

Also, IgA deficiency is more common among those with celiac disease than the general population (though the majority of celiacs have normal total IgA). Secretory IgA is critical for defence against unwanted microbes. It might be worth checking for giardia and other stool pathogens just in case.

Thanks that’s helpful advice. I will see how to get that test.

M

[Elliemae7395]

MasieE  I haven't the experience to offer you the wonderful words of advice you have been given. I just wanted to say my thoughts are with you during this time. I hope you get a good swift testing

[glutenmaestro]

On 8/30/2023 at 12:38 AM, MasieE said:

Thanks that’s helpful advice. I will see how to get that test.

M

Just realised I forgot to mention, if you do get the gene test be sure it includes DQ2.2 and DQ7.5 or tells you which two HLA-DQ genes you have. Quite a few test kits still only look for DQ2.5 and DQ8.

[MasieE]

15 hours ago, glutenmaestro said:

Just realised I forgot to mention, if you do get the gene test be sure it includes DQ2.2 and DQ7.5 or tells you which two HLA-DQ genes you have. Quite a few test kits still only look for DQ2.5 and DQ8.

Ok thanks 😊