My Son’s celiac test result

[Irishgirl5]

Hello, I’m new here and hoping for some advice! 
 

My 8 year old son has been tested twice for celiac disease. Both results showed an elevated TTG but not 10x above baseline. His first TTG was 13.2 and the second 12.8. I’m a bit confused because his results needed to between 0-19 which his is but his consultant has referred him to see a gastroenterologist (appointment Jan 2024). His main symptom is tummy pain (esp after bread products), constipation and diarrhoea. He has been prescribed liquid iron for an iron deficiency which was picked up on his second blood test in August. The consultant suggested putting my son on a gluten free diet for a month and reintroducing to see if he has any reactions. However I felt that giving my son iron supplements and then going gluten free is a lot all at once so the consultant suggested concentrating on the iron issue first. 
 

My son’s tummy pain seems to have become worse over the last few weeks however. Do you think it’s worth trying the gluten free diet now as it seems unfair to be in pain? I have noticed on our food diary that he’s not tolerating certain dairy products such as milkshake as well.  I’m getting more confused by the day and we’re becoming very frustrated by it all. He is a keen footballer and sadly spent the whole game on the sidelines yesterday because his tummy pain was too much to play. My son has an ultrasound scan this coming Tuesday and he has an iron and celiac retest on 22nd December.

[trents]

Welcome to the forum, Irishgirl5@

First and foremost, you should not put your son on a gluten free diet until all testing is complete. Doing so beforehand will sabotage any tests for celiac disease. If you trial a gluten free diet now, he would need to go back on  gluten for at least 6-8 weeks before the next blood draw. These are the guidelines of the Mayo Clinic. Since he has another blood draw for celiac disease on Decemeber 22, there really isn't enough time to both start a gluten free trial and restart gluten for the gluten challenge in preparation for the blood draw. It would likely take weeks to see improvement from going gluten free and then there is the 6-8 weeks for the gluten challenge of going back on gluten.

Second, it is very common with celiac disease to develop and intolerance for dairy, either to the protein component of milk (casein) or the sugar component (lactose).

[Raquel2021]

7 hours ago, Irishgirl5 said:

Hello, I’m new here and hoping for some advice! 
 

My 8 year old son has been tested twice for celiac disease. Both results showed an elevated TTG but not 10x above baseline. His first TTG was 13.2 and the second 12.8. I’m a bit confused because his results needed to between 0-19 which his is but his consultant has referred him to see a gastroenterologist (appointment Jan 2024). His main symptom is tummy pain (esp after bread products), constipation and diarrhoea. He has been prescribed liquid iron for an iron deficiency which was picked up on his second blood test in August. The consultant suggested putting my son on a gluten free diet for a month and reintroducing to see if he has any reactions. However I felt that giving my son iron supplements and then going gluten free is a lot all at once so the consultant suggested concentrating on the iron issue first. 
 

My son’s tummy pain seems to have become worse over the last few weeks however. Do you think it’s worth trying the gluten free diet now as it seems unfair to be in pain? I have noticed on our food diary that he’s not tolerating certain dairy products such as milkshake as well.  I’m getting more confused by the day and we’re becoming very frustrated by it all. He is a keen footballer and sadly spent the whole game on the sidelines yesterday because his tummy pain was too much to play. My son has an ultrasound scan this coming Tuesday and he has an iron and celiac retest on 22nd December.

Just my 2 cents a lot of the iron supplements contain gluten.  Do some research and try to find one that works. It has been very tricky for me to find one that does not causes pain since our guts are so damaged 

[Scott Adams]

Is there any way you can list his blood test results, along with the reference ranges? Sorry but they way you've written it makes it hard to know the important information about his results. For example, I can't be sure exactly which TTG tests were done, were they TTG-IgA? Was a total IgA test also done?

[Irishgirl5]

7 hours ago, trents said:

Welcome to the forum, Irishgirl5@

First and foremost, you should not put your son on a gluten free diet until all testing is complete. Doing so beforehand will sabotage any tests for celiac disease. If you trial a gluten free diet now, he would need to go back on  gluten for at least 6-8 weeks before the next blood draw. These are the guidelines of the Mayo Clinic. Since he has another blood draw for celiac disease on Decemeber 22, there really isn't enough time to both start a gluten free trial and restart gluten for the gluten challenge in preparation for the blood draw. It would likely take weeks to see improvement from going gluten free and then there is the 6-8 weeks for the gluten challenge of going back on gluten.

Second, it is very common with celiac disease to develop and intolerance for dairy, either to the protein component of milk (casein) or the sugar component (lactose).

Your advice makes sense. Gluten has to be present in the body for the test to detect it. It's frustrating having to wait until December for another blood test but I am aware this is to give the iron supplement time to do it's job.

That's interesting about a possible intolerance to dairy. I guess I could try lactose free milk in the meantime to see if that helps?

Thank you for your prompt reply and your helpful information.

[Irishgirl5]

1 hour ago, Scott Adams said:

Is there any way you can list his blood test results, along with the reference ranges? Sorry but they way you've written it makes it hard to know the important information about his results. For example, I can't be sure exactly which TTG tests were done, were they TTG-IgA? Was a total IgA test also done?

I only have the details for the first blood test which was done in May. I will ask my GP for details of the second blood test.

Here goes: 

Tissu transglutaminase IgA lev - (PBK) - Normal.  13.3. CU.     <19.90CU

IgA - (PBK) - Normal. 1.11. g/L.     0.80 - 3.00g/L

All seems in the normal range. The consultant is referring my son to the gastroenterologist due to his symptoms: tummy pain, constipation, diarrhoea. The consultant also said although the TTG is in the normal range (13.3) it is elevated. What would a normal range be if 13.3 seems high? It seems odd as the test is in theory saying not celiac. 

Thank you for your prompt reply.

[trents]

1 hour ago, Irishgirl5 said:

Your advice makes sense. Gluten has to be present in the body for the test to detect it. It's frustrating having to wait until December for another blood test but I am aware this is to give the iron supplement time to do it's job.

That's interesting about a possible intolerance to dairy. I guess I could try lactose free milk in the meantime to see if that helps?

Thank you for your prompt reply and your helpful information.

The testing is not for the purpose of measuring gluten levels in the body. It is for the purpose of measuring antibody levels caused by the inflammation in the small bowel lining that gluten consumption causes in celiacs. It takes weeks or months for these antibodies to build up to detectable levels in the blood stream.

 

Edited October 1, 2023 by trents

[Irishgirl5]

14 hours ago, trents said:

The testing is not for the purpose of measuring gluten levels in the body. It is for the purpose of measuring antibody levels caused by the inflammation in the small bowel lining that gluten consumption causes in celiacs. It takes weeks or months for these antibodies to build up to detectable levels in the blood stream.

 

Ok thank you for the information.

[Irishgirl5]

15 hours ago, Irishgirl5 said:

I only have the details for the first blood test which was done in May. I will ask my GP for details of the second blood test.

Here goes: 

Tissu transglutaminase IgA lev - (PBK) - Normal.  13.3. CU.     <19.90CU

IgA - (PBK) - Normal. 1.11. g/L.     0.80 - 3.00g/L

All seems in the normal range. The consultant is referring my son to the gastroenterologist due to his symptoms: tummy pain, constipation, diarrhoea. The consultant also said although the TTG is in the normal range (13.3) it is elevated. What would a normal range be if 13.3 seems high? It seems odd as the test is in theory saying not celiac. 

Thank you for your prompt reply.

 

17 hours ago, Scott Adams said:

Is there any way you can list his blood test results, along with the reference ranges? Sorry but they way you've written it makes it hard to know the important information about his results. For example, I can't be sure exactly which TTG tests were done, were they TTG-IgA? Was a total IgA test also done?

I phoned my GP for the results of my son’s second test that was done in August and they don’t have a copy of the results because it was the hospital that requested the test not my GP  Apparently they run two separate systems which is inconvenient. My son has an abdomen ultrasound tomorrow afternoon - I’ll see if they have a copy of the blood results while I’m there at the hospital. I’m assuming the ultrasound is to rule out other causes of tummy pain.

[Scott Adams]

22 hours ago, Irishgirl5 said:

I only have the details for the first blood test which was done in May. I will ask my GP for details of the second blood test.

Here goes: 

Tissu transglutaminase IgA lev - (PBK) - Normal.  13.3. CU.     <19.90CU

IgA - (PBK) - Normal. 1.11. g/L.     0.80 - 3.00g/L

All seems in the normal range. The consultant is referring my son to the gastroenterologist due to his symptoms: tummy pain, constipation, diarrhoea. The consultant also said although the TTG is in the normal range (13.3) it is elevated. What would a normal range be if 13.3 seems high? It seems odd as the test is in theory saying not celiac. 

Thank you for your prompt reply.

Yes, the TTG IgA test is elevated, which can be a concern, especially given his symptoms. The doctor may want to schedule a biopsy, but maybe not since it wasn't above the positive level. If your doctor decides not to do any further testing for celiac disease, then it might make sense to just try a gluten-free diet.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

 

 

[Wheatwacked]

It is unconscionable that an 8 year old should have to suffer for four months until January while the beauracracy crawls.  And that's only for the consultation.  Then wait for the biopsy to be scheduled, because the blood tests are inconclusive.  I agree with "The consultant suggested putting my son on a gluten free diet for a month and reintroducing to see if he has any reactions."  There is plenty of time considering the appointment schedule.

On 10/1/2023 at 3:08 AM, Irishgirl5 said:

(appointment Jan 2024)

Other tests it would be good to know the results. Vitamin D, B12, Homocysteine, to get an indication of vitamin D deficiency.  Low B12 can be a cause of anemia.  Celiac Disease is usually comorbid with multiple defficiencies due to Malabsorption Syndrome.

Which reminds me of a recent post by @MominWA about her 10 year old. 

Hers: "He woke up one morning with nausea, vomiting, dizziness, and pain in the lower right quadrant of his abdomen (right where his appendix is). It took 5 weeks to get a diagnosis via scope (his TTG IGA was only 5, measured twice, with 1-3 being normal"

Yours: "My 8 year old son has been tested twice for celiac disease. Both results showed an elevated TTG but not 10x above baseline.  His main symptom is tummy pain (esp after bread products), constipation and diarrhoea. 

Quote

     10 year old with sudden onset, gastroparesis, weight loss, no improvement after 6 weeks on gluten-free diet. AIP? Supplements? Help!

August 7 - I am continuing the B1 supplements. It is hard to pinpoint what has helped him make modest improvement over the last week or two- we upped vitamin D, started the B1 and Choline all at the same time. He has had his glucose tested often and shows no signs of diabetes.

Sept 22 - I would say he is 95% better, he is starting to build up strength and endurance again, and is back to reading and making stop motions. School starts in two weeks and so does soccer, he is really excited for both. We will keep up the supplements. 

Sept 26 - He had no improvement for almost 8 weeks after starting a gluten free diet (even had to be hospitalized again for weight loss with feeding tube). He improved rapidly around week nine, about a week after I started B1, choline and high vitamin D as suggested on here.   

 

 

[Irishgirl5]

On 10/3/2023 at 2:50 PM, Wheatwacked said:

It is unconscionable that an 8 year old should have to suffer for four months until January while the beauracracy crawls.  And that's only for the consultation.  Then wait for the biopsy to be scheduled, because the blood tests are inconclusive.  I agree with "The consultant suggested putting my son on a gluten free diet for a month and reintroducing to see if he has any reactions."  There is plenty of time considering the appointment schedule.

Other tests it would be good to know the results. Vitamin D, B12, Homocysteine, to get an indication of vitamin D deficiency.  Low B12 can be a cause of anemia.  Celiac Disease is usually comorbid with multiple defficiencies due to Malabsorption Syndrome.

Which reminds me of a recent post by @MominWA about her 10 year old. 

Hers: "He woke up one morning with nausea, vomiting, dizziness, and pain in the lower right quadrant of his abdomen (right where his appendix is). It took 5 weeks to get a diagnosis via scope (his TTG IGA was only 5, measured twice, with 1-3 being normal"

Yours: "My 8 year old son has been tested twice for celiac disease. Both results showed an elevated TTG but not 10x above baseline.  His main symptom is tummy pain (esp after bread products), constipation and diarrhoea. 

 

 

Thank you for your reply and insight. I will see if I can scan a copy of my Son’s full blood results. 
 

He had an abdominal ultrasound yesterday to rule out other causes of tummy pain and the results are all clear. His kidney, liver, spleen, tummy, lungs all seem fine. This is great news of course but still no answers….. Interestingly the sonographer commented that she could see ‘gas’ on the scan. 
 

I spoke with his GP today. She has advised my son keeps eating gluten until his blood test again in December (it’s 11 weeks away!!). She is going to try to get the gastroenterologist to bring forward his appointment from Jan 2024 although they are prob awaiting the blood test results from December test so bringing it forward may not work out. She has also advised he reduce his iron to 5ml once a day in case this is contributing to his tummy pain (he was originally put on 3 x 5ml per day but it gave him diarrhoea). 
 

It definitely feels like a catch-22 situation - staying on gluten for the retest but putting up with the symptoms until then. 

[Scott Adams]

Let us know how it goes!

[Irishgirl5]

It's been a while since I last posted on here but I thought I'd give a brief update ... My son had his appointment with the paediatric gastroenterologist. The consultant said my son is not celiac based on his blood test he had done last August (Tissu transglutaminase IgA lev - (PBK) - Normal.  13.3. CU.     <19.90CU). She gave my son a choice as to whether he was happy to have another blood test to re-check his levels but his answer was no. I am frustrated at this because his iron stores were low on his last blood test and it would have been helpful to know if they have built up again. Anyway, he has to continue taken iron supplements until the end of March. He has another appointment with the gastroenterologist in July. The consultant said my son could be sensitive to gluten but she wouldn't recommend going gluten free as it's expensive in the UK. Despite this we have been giving my son gluten free pasta/bread/biscuits. We haven't gone completely gluten free, just cut back. My son's symptoms have improved over the last few months. He has less tummy pain. The consultant recommended keeping him on paediatric laxido to help with his constipation. He still has occasional diarrhoea but the consultant said this can be linked to his constipation. He has also been given moisturising cream and hydrocortisone cream to treat eczema under his eyes and on his hands and legs. Our medicine cabinet looks like a Boots pharmacy!

 We don't have a definite answer to my son's tummy pain/constipation but as things seem to have improved by cutting back on gluten we will just continue as we are for now and see where we are at his next appointment in July.

[trents]

Who is this consultant person? Is this a physician assistant of some kind?

I'm confused about your posting of the tTG-IGA test results. So, anything under 19.9CU is considered normal or negative and your son's score was below that at 13.3? Yet in your first post you indicated his "TTG was elevated". When you say "elevated" do you mean by that it was positive or just more than 0? 

I strongly disagree with the consultant's advice to not go completely gluten free if your son is gluten sensitive. You have seen improvement by cutting back on gluten but some symptoms still remain. Why not go 100% gluten free and see if there is even more improvement. By analogy, if your son were being exposed to a toxic element in his drinking water would you be content to just cut back on it? Wouldn't you want to completely eliminate it?

And going gluten free does not have to be terribly expensive. It only is if you insist on buying processed gluten free foods. There are plenty of naturally gluten free everyday foods that you can rely on. Eat more potatoes and rice instead of processed gluten free pasta facsimile foods. 

Edited February 26 by trents

[Irishgirl5]

 

Thank you for your reply. 

I was also confused at the paediatric's original concern at 13.3 being elevated yet it is under 19 CU. He referred my son to gastro because of his tummy pain/constipation/diarrhoea symptoms. I was under the impression that the blood test would be repeated by the gastroenterologist to re-check his levels. Obviously they are not overly concerned by his previous blood test to feel a need to repeat it especially seeing as in theory his previous result was 'normal'. The consultant we saw is a gastroenterologist specialising in digestive care. I forgot to mention in my previous post that he is slim for his age - on the 25th centile but the consultant wasn't concerned. They will probably weigh him again at his appointment in July. 

I agree with you that gluten free doesn't necessarily mean expensive. Many healthy foods are naturally gluten free. My son is quite a picky eater so I have been swapping gradually where I can and he does understand that some foods seem to hurt his tummy. Thank you for your advice.

[Wheatwacked]

Thanks for the update.

Iron is best absorbed on an empty stomach. Yet, iron supplements can cause stomach cramps, nausea, and diarrhea in some people. 

the prevalence of vitamin D deficiency was higher in iron deficient children compared to those who were iron replete. In overall meta-analyses, 25(OH)D concentrations <50 nmol/L were associated with a 98% increased risk of iron deficiency  compared to 25(OH)D concentrations > 75 nmol/L.    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9002534/#:~:text=Vitamin D Status Is Associated,concentrations > 75 nmol%2FL.

Why Are Choline and Iron Important for the Children?

the belly aches I would see if increasing choline helps; Liver, eggs, red meat.

Low vitamin D causes poor iron absorption.

 

 

[Scott Adams]

I'd recommend that your son try a 100% gluten-free diet to see if his symptoms go away, then you will know the cause. 

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.