Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results

[mytype1diabetes]

Hi all,

Posting from the UK. 

My 2 year old was recently diagnosed with Type 1 diabetes. In the UK they routinely screen for coeliac disease. The test showed slightly elevated levels of TTG antibodies. The consultant wants to repeat these antibodies in 3-6 months time to determine clinical significance. In our letter it said "marginally elevated TTG antibodies (22ku/l), normal endomysial antibodies". I'm not exactly sure what this means, especially given one of the tests were within the normal range, and if we should be worried about the numbers. It is difficult to know if she has any "symptoms" but at the time she was diagnosed with Type 1 diabetes I noticed that her stools had changed. They are now probably a Type 6 on the Bristol stool chart. She seems to be quite itchy which is a recent thing and over the past week I have noticed some hair loss/thinning. I feel very worried and I'm not sure I can wait for her to be retested in 3-6 months time. 

I'd appreciate any wisdom, advice or information you have.

Thanks 🙏🏼

[Scott Adams]

I’m so sorry to hear about your toddler’s recent Type 1 diabetes diagnosis, and I understand how overwhelming it must feel to now be navigating possible celiac disease as well. The slightly elevated TTG antibodies (22 ku/L) with normal endomysial antibodies could indicate a few things—sometimes, mild elevations can occur due to factors other than celiac disease, such as recent infections or even Type 1 diabetes itself. However, the symptoms you’ve noticed (changes in stools, itching, and hair thinning) could potentially align with celiac disease, so it’s understandable why you’re concerned. Since the consultant wants to retest in 3–6 months, it may be because they’re assessing whether the antibody levels persist or increase, which would strengthen the case for further investigation (like a biopsy). In the meantime, if your daughter’s symptoms worsen or you feel uneasy waiting, it’s completely reasonable to ask for an earlier review or a referral to a pediatric gastroenterologist for further advice. Keeping a symptom diary until the next test might also help track any patterns. You’re doing a great job advocating for your little one—trust your instincts and don’t hesitate to push for more clarity if needed. Sending you lots of support.

[trents]

Here is an article that gives an overview of all tests that can be used to detect celiac disease: 

 

As you can see, the different tests vary in their degree of specificity and sensitivity. So, it is to be expected that if someone has celiac disease, not all the tests will be positive. Also notice that the tests break down into two large groups, IGA-based tests and IGG-based tests. There is also the EMA (Endomysial Antibodies) which is an older test and has largely been supplanted by he tTG-IGA which is less expensive to administer. So, when you report that the TTG score from your daughter's bloodwork is 22ku/l, we assume you are referring to the tTG-IGA test, which is the most popular test ordered by physicians when checking for celiac disease and considered to be the centerpiece test.

However, you do not mention if there was a "total IGA" test run. Whenever the tTG-IGA is ordered, a total IGA should also be ordered to check for IGA deficiency. IGA deficiency will result in other IGA test scores, such as the tTG-IGA being artificially low, even falsely negative. This is especially true for young children. This is discussed in the article I linked. If your physician did not order total IGA test, this should have been done. Do you have a recourse for requesting such?

I should also mention that you must not withdraw gluten from your toddler's diet until all testing for celiac disease is completed. Doing so would invalidate the testing.

Edited June 25 by trents

[Wends]

 



So sorry and sending well wishes. Replying from the UK.

The NHS Coeliac Screen test is igAttg (including total igA). Your toddler is unlikely igA deficient with a titer of 22, as a positive test. When the igA anti-tissue transglutaminase antibodies are raised above the reference value or positive, the endomysial test is performed.

The TTG test is suggestive of coeliac disease BUT it can be transiently raised in type 1 diabetes, milk protein intolerance (common in early childhood. Can also cause malabsorption similar to coeliac disease). Can be slightly raised in other food sensitivity and food allergy and some other conditions. Whilst it is more specific for coeliac disease than the older anti-gliadin test the EMA test gives a high specificity for coeliac, but labour intensive test so is checked when the TTG shows positive as a further confirmation of a likelihood of Coeliac.

Sometimes in children the anti-DGP (deaminated gliadin peptide) igA and IgG are performed as more likely positive in childhood coeliac disease. Unfortunately less used test these days in favour of ttg test. Though in research studies still utilised in addition to ttg and EMA. It usually follows that the EMA test will be positive in active coeliac disease later than the TTG shows positive.

It may be classic transient antibodies with type 1. Likely what the Dr is counting on to not worry you or put your child through unnecessary testing. it also takes time as in weeks/months for antibodies to build up. The new guidelines by Gastroenterology Society say in children coeliac can be diagnosed without biopsy if the ttg is ten times the upper value. Plus positive EMA. EMA is usually positive after ttg.

It’s a good sign it’s negative and the Doctor is doing the right thing to retest in three to six months. It’s the only way for a definite diagnosis and whether further testing is needed (endoscopy and biopsy). The Doctor is taking the wait and see approach as it is common in type 1s for the TTG antibodies to normalise too, and will be following standard practice.

Return to your Dr sooner though, if there are signs of malabsorption and sudden deterioration. It wouldn’t be unreasonable to request another blood test sooner with symptoms of coeliac. It’s a tough one. Have you a family history?

Re type 1, Dr Bernstein book invaluable, and type 1 grit online. If you’ve not heard of this elderly type 1 Dr (diagnosed as a child) and his story already you need to. Sadly he recently passed in his 90s still practicing and treating type 1s and 2s. Wealth of info on his diabetes university you tube channel. Was the first to start testing blood glucose numbers at home, he was an engineer and retrained as a Dr. He gave the information to the world and diabetics that its possible to have normal blood glucose numbers and prevent the complications. The law of small numbers.

Hope this reply is helpful.

 

[knitty kitty]

Welcome to the forum, @mytype1diabetes,

Your statement that your daughter has become itchy and has hair loss made me think of iron deficiency.  Those were the same symptoms i had when I was iron deficient.  Was she tested for iron deficiency anemia at the time of her diabetes diagnosis?  

Seems in the early stages of iron deficiency anemia, blood glucose levels can be falsely elevated.  Treating Vitamin D deficiency can also help immensely. 

Vitamin D deficiency, iron deficiency, and deficiencies in the eight B vitamins, especially thiamine, can occur in Celiac disease.  Changes in stool can be caused by iron or thiamine deficiency.

I was diagnosed with type two diabetes and had the same deficiencies.  I would not feel comfortable waiting three to six months for a recheck.  I would get the iron deficiency checked right away.  

Hope this helps!  Sending prayers!

References:

The Effect of Iron Deficiency Anemia on Hemoglobin Glycation in Diabetics and Non-diabetics

https://pmc.ncbi.nlm.nih.gov/articles/PMC11513211/#:~:text=noted increased HbA1c in IDA individuals%2C which,IDA before adjusting diabetes treatment [ 11].

Effects of iron deficiency anemia on hemoglobin A1c in type 1 diabetes mellitus

https://pubmed.ncbi.nlm.nih.gov/10453183/

Impact of vitamin D deficiency on iron status in children with type I diabetes

https://www.nature.com/articles/s41598-024-61559-5#:~:text=Iron-deficiency anemia is the,both clinical conditions that coexist.

Thiamine Level in Type I and Type II Diabetes Mellitus Patients: A Comparative Study Focusing on Hematological and Biochemical Evaluations

https://pmc.ncbi.nlm.nih.gov/articles/PMC7282352/

Edited June 25 by knitty kitty
Typo correction

[mytype1diabetes]

Thank you all for your kind wishes, it means so much. The information you've all shared has been so useful.

We have a great diabetes team and trust the consultants decision to wait a few months to repeat the blood test. We also don't want to put her through any more tests than she needs as it's so tough on her and us! It feels unbearable waiting when she has some unexplained symptoms and as her mum I want to make sure we're doing everything we can to keep her healthy.

That's interesting re: iron levels. I hadn't thought about that but I'm pretty sure this would've been checked as she was in hospital with DKA and they did lots of tests. I have requested a copy of her results.

[mytype1diabetes]

On 6/25/2025 at 9:12 PM, Wends said:

 



So sorry and sending well wishes. Replying from the UK.

The NHS Coeliac Screen test is igAttg (including total igA). Your toddler is unlikely igA deficient with a titer of 22, as a positive test. When the igA anti-tissue transglutaminase antibodies are raised above the reference value or positive, the endomysial test is performed.

The TTG test is suggestive of coeliac disease BUT it can be transiently raised in type 1 diabetes, milk protein intolerance (common in early childhood. Can also cause malabsorption similar to coeliac disease). Can be slightly raised in other food sensitivity and food allergy and some other conditions. Whilst it is more specific for coeliac disease than the older anti-gliadin test the EMA test gives a high specificity for coeliac, but labour intensive test so is checked when the TTG shows positive as a further confirmation of a likelihood of Coeliac.

Sometimes in children the anti-DGP (deaminated gliadin peptide) igA and IgG are performed as more likely positive in childhood coeliac disease. Unfortunately less used test these days in favour of ttg test. Though in research studies still utilised in addition to ttg and EMA. It usually follows that the EMA test will be positive in active coeliac disease later than the TTG shows positive.

It may be classic transient antibodies with type 1. Likely what the Dr is counting on to not worry you or put your child through unnecessary testing. it also takes time as in weeks/months for antibodies to build up. The new guidelines by Gastroenterology Society say in children coeliac can be diagnosed without biopsy if the ttg is ten times the upper value. Plus positive EMA. EMA is usually positive after ttg.

It’s a good sign it’s negative and the Doctor is doing the right thing to retest in three to six months. It’s the only way for a definite diagnosis and whether further testing is needed (endoscopy and biopsy). The Doctor is taking the wait and see approach as it is common in type 1s for the TTG antibodies to normalise too, and will be following standard practice.

Return to your Dr sooner though, if there are signs of malabsorption and sudden deterioration. It wouldn’t be unreasonable to request another blood test sooner with symptoms of coeliac. It’s a tough one. Have you a family history?

Re type 1, Dr Bernstein book invaluable, and type 1 grit online. If you’ve not heard of this elderly type 1 Dr (diagnosed as a child) and his story already you need to. Sadly he recently passed in his 90s still practicing and treating type 1s and 2s. Wealth of info on his diabetes university you tube channel. Was the first to start testing blood glucose numbers at home, he was an engineer and retrained as a Dr. He gave the information to the world and diabetics that its possible to have normal blood glucose numbers and prevent the complications. The law of small numbers.

Hope this reply is helpful.

 

Thanks for this Wends and appreciate your insights! I'm not sure what you mean by "Your toddler is unlikely igA deficient with a titer of 22, as a positive test." ?

I had a look at Dr Bernstein's work and we've definitely noticed that on lower carb days her blood glucose levels are much easier to manage. Our nutritionist advised against a low carb diet for toddlers as they said young children, unlike adults, rely on carbs for their growth and development. What's your view on this?

Regarding malabsorption - it's so hard to know what's "normal". My daughter's poos have always been on the softer side as she's breastfed and we eat very healthily. I've booked an appointment with our GP and will take some photos!

[knitty kitty]

@mytype1diabetes,

Do keep in mind that Celiac Disease is genetic, so all first degree relatives (parents, siblings) should be checked for celiac disease as well.  

Thiamine deficiency is common in breastfeeding mothers and their babies, even in countries where people are well fed and eat healthy.  A high carbohydrate diet requires more thiamine to turn those calories into energy.  Mothers on a high carbohydrate diet can be deficient in thiamine which also causes the infant to be deficient.

DKA is found in children with thiamine deficiency.   Thiamine deficiency correction is part of DKA treatment. Thiamine deficiency needs to be addressed and corrected quickly and maintained.  Ask for an Erythrocyte Transketolace test for thiamine deficiency.

I've experienced this myself.  Diabetics continue to lose thiamine due to poor renal uptake. Thiamine should be supplemented daily.  Thiamine is a constant in my life which helps immensely with my diabetes.

 

References:

Thiamine deficiency in pregnancy and lactation: implications and present perspectives

https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/

Pediatric thiamine deficiency disorders in high‐income countries between 2000 and 2020: a clinical reappraisal

https://pmc.ncbi.nlm.nih.gov/articles/PMC9290709/

Hiding in Plain Sight: Modern Thiamine Deficiency

https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/

The Impact of Thiamine Treatment in the Diabetes Mellitus 

 https://pmc.ncbi.nlm.nih.gov/articles/PMC3376872/#:~:text=Low plasma thiamine level was,increase in thiamine transporter expression.

Thiamine as adjunctive therapy for diabetic ketoacidosis (DKAT) trial protocol and statistical analysis plan: a prospective, single-centre, double-blind, randomised, placebo-controlled clinical trial in the USA

https://pmc.ncbi.nlm.nih.gov/articles/PMC10910407/#:~:text=Introduction,acidemia in patients with DKA.

The relationship between lactate and thiamine levels in patients with diabetic ketoacidosis

https://pubmed.ncbi.nlm.nih.gov/23993771/

Acute thiamine deficiency in diabetic ketoacidosis: Diagnosis and management

https://pubmed.ncbi.nlm.nih.gov/17006386/

Thiamine status during treatment of diabetic ketoacidosis in children - tertiary care centre experience

https://pubmed.ncbi.nlm.nih.gov/36440592/

Low thiamine levels in children with type 1 diabetes and diabetic ketoacidosis: a pilot study

https://pubmed.ncbi.nlm.nih.gov/25560422/

[RMJ]

2 hours ago, mytype1diabetes said:

Thanks for this Wends and appreciate your insights! I'm not sure what you mean by "Your toddler is unlikely igA deficient with a titer of 22, as a positive test." ?

Celiac testing often includes looking at total IgA levels, because if someone is deficient the IgA tests for celiac disease may not be accurate (false negatives). 

Did her doctors say anything about how much gluten she should consume?  If you change that it could affect her next test results.

[knitty kitty]

Hair loss is also a symptom of thiamine insufficiency.    

Peripheral neuropathy, another thiamine insufficiency symptom, can cause a feeling of itchiness on the skin without a rash.

Edited June 27 by knitty kitty
Typo correction

[Wends]



3 hours ago, mytype1diabetes said:

Thanks for this Wends and appreciate your insights! I'm not sure what you mean by "Your toddler is unlikely igA deficient with a titer of 22, as a positive test." ?

I had a look at Dr Bernstein's work and we've definitely noticed that on lower carb days her blood glucose levels are much easier to manage. Our nutritionist advised against a low carb diet for toddlers as they said young children, unlike adults, rely on carbs for their growth and development. What's your view on this?

Regarding malabsorption - it's so hard to know what's "normal". My daughter's poos have always been on the softer side as she's breastfed and we eat very healthily. I've booked an appointment with our GP and will take some photos!

In terms of a low carb diet the thing to remember is that it is not a “no carb” diet. Far from it. There are a lot of misconceptions. Real food is the key. Avoiding refined sugars and starches. In the textbook that doctors use it states that “Carbohydrates” are not essential to life, unlike proteins and fats. Glucose on the other hand is essential, yes, and the liver makes and tightly regulates all it needs in the presence of adequate calories from proteins and fats. It’s biochemistry 101. 

My personal view is that the NHS advice is out of date. And no wonder the life expectancy and quality of life of people with diabetes down the road is reduced - not to mention the cost to the NHS when complications arise decades after diagnosis because too much insulin to keep numbers in range is like a bandage to cover up while under the surface the damage is still going on. Retinopathy. Peripheral neuropathy. Sorry, don’t want to doom and gloom. But it’s true. The fuel you choose today dictates tomorrow. The information is out there in the scientific papers. It’s a can of worms but there is decades of scientific literature to back up a natural low carb diet. Professor Tim Noakes of Cape Town university went through a three year trial (and won) after a dietitian accused him because he recommended weaning a child on to meat after breastfeeding. They said they needed carbohydrates. He’s a professor of sports and exercise and medical doctor with diabetes. There’s a whole host of Professors and medical doctors and dietitians and medical professionals around the world advocating for real food and essentially a low carb diet. Humans evolved over millennia on real food. None of the modern high carb ultra processed or modern breads of the last century or so. Check out the Public Health Collaboration UK based charity. There’s conference videos online and free info. I think type 1 diabetes was covered a few years ago. Dr David Cavan UK specialist. Professor Knoakes also came out with a great cookery book called Superfood for Superchildren…from toddlers to teens. It is part of the Real Meal Revolution series of healthy eating.

It sounds like youre on this already with breastfeeding and eating healthy so good on you! So sorry about the cards your little one has been dealt but with the right education and diet it is totally manageable and there’s no reason not to have stable blood sugars and have a long and happy life without diabetes complications. Same as children diagnosed with coeliac disease, a healthy naturally gluten free diet is the antidote to the gluten poisoning. Sugar and refined starches are toxic to diabetics. With modern technology of blood glucose monitors it’s easy to figure out suitable foods by how different foods effect the blood glucose level.

Sorry, the reference of igA deficiency possibility was to Trent’s reply regarding Total igA and “artificially low” positive test. Not the case as the NHS screen total igA.

In terms of poo signs. The Guts UK charity has loads of great info.

 

[trents]

Wends is correct in that for generations the food pyramid chart we were given with carbs at the base is incorrect. The average person gets far too many of their calories from carbs and coincidentally, more calories than they need for good health since carbohydrate rich foods are also calory rich foods. The body can learn to convert protein and fat into energy more efficiently when carbs are withheld. This is the basis of the ketogenic diet and why it works so well. I am not sure I would go full keto for a developing child however. Carbs are not evil. The problem isn't carbs per se but too many carbs.

[knitty kitty]

I agree, low carb/no carb is the best way to go.   I follow the Autoimmune Protocol Diet, a ketogenic Paleo diet, for my diabetes and celiac disease.  I keep carbs low.  The AIP diet helps immensely to keep my blood glucose levels in range.  I supplement with Benfotiamine, a form of thiamine, because the pancreas uses lots of thiamine to make insulin and digestive enzymes.  Thiamine deficiency can precipitate diabetes.  

Thiamine is needed to turn carbohydrates into energy.  In an effort to ration thiamine if there's insufficient thiamine, the body turns excess carbohydrates into fat and stores it, hense the rise in obesity.  (Our bodies are naturally more efficient at burning fat for fuel.)  Highly processed foods do not contain sufficient vitamins and minerals needed for the body to process them into energy and enzymes necessary for the body to function and grow properly.  This is called High Calorie Malnutrition by Dr. Chandler Marrs and Dr. Derrek Lonsdale (Hiding In Plain Site:Modern Thiamine Deficiency).  Dr. Lonsdale has studied thiamine in children and adults with diabetes and other diseases for decades.  Their website "hormones matter" is very informative.