Does my 4yr old need an endoscopy or can we just go gluten free

[nattaliec]

Hi. My daughter (4yrs old) has had stomach pain, loose stools and extreme fatigue every day for at least a year. She started losing weight.  A month or so ago she was tested for celiac and other bloods. Her tests reveal she’s anaemic and she tested positive for Tissue transglutaminase IGa but mildly positive. Her result was 26 CU (normal 0-19). Her endomysial IGA was negative. We were then referred to paediatrics. They wanted to do an endoscopy under general anaesthetic. Both myself and my mum don’t respond well to general anaesthetic so I’m not overly keen for this. We’ve done further bloods tests (results pending) and I’ve put her onto a gluten free diet. She’s only been gluten free for a week but we’ve now had 3 days of no stomach pains or loose stools which feels miraculous. Is there any reason for going forward with the endoscopy if her symptoms continue to improve dramatically with the gluten-free diet? 
thanks 

[Scott Adams]

I would also be very cautious about having an endoscopy done on a 4 year old, especially if you have a family history of reactions to anesthesia. 

If she's had a positive tTg test for celiac disease AND her symptoms have gone away after going gluten-free, the odds are very high that she has celiac disease, so the endoscopy may not be necessary. The article below says:

Quote

tTG-IgA (tissue transglutaminase IgA) blood test for celiac disease - This test measures the levels of IgA antibodies to tissue transglutaminase, an enzyme that is involved in the immune response to gluten in those who have celiac disease. The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease.

  

[FoodieJC]

It is my understanding that a diagnosis of celiac disease is not given without the endoscopy biopsy being positive for celiac.  We had a similar situation with our 7y/o and went forward with the endoscopy for two reasons.  First, there are other things that can cause some of the bloodwork results, so it’s best for a dr to come to conclusions about what’s really going on. Endoscopy biopsy is the gold standard for celiac diagnosis. Second, it allows the patient, the family, and those we interact with in life to take the need to be gluten-free seriously and patients tend to have better results when they have this form reason to truly go gluten-free.  Third, gluten-free diet affects children greatly in school, at parties, and at other public events which include food, so it has a huge impact and doesn’t need to be taken on without real cause (ie celiac dx).  

Also, the type of and level of anesthesia used for this procedure is different and lighter than other surgical procedures.  Discussing your anesthesia concerns with your doctor is the way to go!

I’m sure you will make the best decision for your child.  Note: they do have to be eating gluten in order to do the endoscopy.

Jennifer

[Ava B]

I have celiac disease diagnosed via endoscopy 5 years ago. My son was diagnosed via endoscopy at 6 years old after he began experiencing abdominal pain, vomiting and loose stools (At diagnosis his tTg was near 200). When his younger sister, who has selective IGA defeiciency which was diagnosed when she was 2yo, which prompted doctors to initially suspect celiac, (tTg was normal at that time), started experiencing similar GI issues at 4yo, we tried eliminating gluten from her diet and all of her symptoms immediatley improved. She is still gluten-free and thriving. Doctors at The University of Chicago have told us that at some point we will need to reintroduce her to gluten and complete an endoscopy because she will not be considered to "officially" have a celiac disease diagnosis without confirmation. We will follow their advice at some point, but are not looking forward to having her go through the procedure. I wish you all the best on this journey! 

[cristiana]

Hi @nattaliec

I just wanted to clarify where you are posting from?  We get posts from all over the world, it is not always easy to know.

If you are posting from the UK, I'd like to add the NHS takes Coeliac Disease very seriously and this is why often they are very keen to do an endoscopy to rule it in/or out. 

With a formal diagnosis, depending on where you live, there should be the following support:

• support from a nutritionist 
• a bi-annual/annual review with a gastroenterologist which includes blood tests to check for compliance to a gluten free diet, as well as to check for other possible autoimmune issues or complications.
• checks on growth and weight
• a prescription for gluten free staples

Later in life coeliacs can sometimes develop issues with bone density, so this is included in the package (although I'm not sure if this applies to children). .

Interestingly, my consultant told me when I was diagnosed in 2013 that if my children were tested for coeliac and tested positive, they would not necessarily need to have endoscopies because I was a coeliac.  Do you have other close family members with coeliac disease, because if this is the case, it would be worth mentioning to the team?

 

 

 

 

 

Edited July 1, 2023 by cristiana

[Scott Adams]

21 hours ago, Ava B said:

I have celiac disease diagnosed via endoscopy 5 years ago. My son was diagnosed via endoscopy at 6 years old after he began experiencing abdominal pain, vomiting and loose stools (At diagnosis his tTg was near 200). When his younger sister, who has selective IGA defeiciency which was diagnosed when she was 2yo, which prompted doctors to initially suspect celiac, (tTg was normal at that time), started experiencing similar GI issues at 4yo, we tried eliminating gluten from her diet and all of her symptoms immediatley improved. She is still gluten-free and thriving. Doctors at The University of Chicago have told us that at some point we will need to reintroduce her to gluten and complete an endoscopy because she will not be considered to "officially" have a celiac disease diagnosis without confirmation. We will follow their advice at some point, but are not looking forward to having her go through the procedure. I wish you all the best on this journey! 

If she is not having any issues staying on her gluten-free diet I see zero reason to go through with a gluten challenge, but of course this is your choice. On the downside of getting an official diagnosis (and for the record none of my doctors have EVER called for more follow-up testing regarding my celiac disease status, vitamin/mineral levels, etc., without a serious push from my side) is that private health and life insurance can be more expensive.