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- knitty kitty replied to mytype1diabetes's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results
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... -
- chrish42 commented on Scott Adams's article in Summer 2025 Issue7To Kiss or Not to Kiss: The Truth About Gluten Transfer Through a Smooch (+Video)
That's what I thought.- celiac disease
- cross-contamination
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- Wends replied to mytype1diabetes's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results
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 t... -
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- chrish42 commented on Scott Adams's article in Summer 2025 Issue7
To Kiss or Not to Kiss: The Truth About Gluten Transfer Through a Smooch (+Video)
Scott.....I concur. That is what I have concluded. It seems like the symptoms can be all over the place. I wonder how many doctors today would even consider Gluten problems when doing a diagnosis?- 1
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By knitty kitty · Posted
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. -
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.
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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. -
By Scott Adams · Posted
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. -
By mytype1diabetes · Posted
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 🙏🏼
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