18-month-old coeliac?? Advice please!

[Maimoudaki]

My 18-month-old has always been a fussy eater with poor appetite. Since starting nursery he’s been having increased bread consumption as frequent toast with butter snack at nursery. We noticed that his belly was bloated significantly and his thighs were wasting. His weight dropped a centile going below 0.4th centile.

I suspected coeliac and started him on gluten free diet two weeks before seeing paediatrician. His symptoms improved massively: no bloating, much better appetite, better sleep etc. Paediatrician only tested TTG and said it was negative. He said his iron is low so just gave us dietary advice and discharged!
I have been reading and I am really worried they are just being ignorant and defensive.

In hindsight I think I may be coeliac too (his mother). He was unexpectedly born small for his age (2nd centile) and nobody investigated this, I was eating full gluten diet during pregnancy as unaware and not diagnosed. I am now in a spiral of feelings of guilt that I have affected his future health and proper growth for life!!

Help please !! Feeling lost and helpless, not sure how to navigate the system and get proper diagnosis and treatment for both of us.

Should I “demand” certain coeliac panel blood tests for both of us? How to best approach this? Which tests should I ask for?

Is it possible his growth and development can catch up to the same level as any baby born to a non-coeliac mother?? 

Sorry I know lots of questions, I would be extremely grateful for any advice!! Thank you in advance… 

A coeliac worried mother …

 

[trents]

Welcome to the forum, Maimoudaki!

First, your putting him on a gluten free diet two weeks before the blood antibody test may have compromised the test. The antibody tests are designed to measure inflammation markers in the blood characteristic of celiac disease. If you remove gluten, the inflammation subsides and the markers for it begin to disappear. You would need to put your son back on regular amounts of gluten for 6-8 weeks before any retesting is done for blood antibodies.

There are other blood antibody tests that can be done besies the tTG-IGA, though the tTG-IGA is the most common one ordered by physicians. However, sometimes it misses those who truly do have celiac disease. So there are other blood antibody tests that can be run that check for different inflammatory markers. Here is an overview: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The term for running a battery of blood antibody tests is called "a full celiac panel." Young children's immune systems are immature and often do not react the same way as that of adults so the full celiac panel can catch the disease when the tTG-IGA is negative.

Second, your child could have NCGS (Non Celiac Gluten Sensitivity) which would produce many of the same systems without damaging the villi of the small bowel as does celiac disease. The antidote is the same: complete elimination of gluten from the diet. There is no test for NCGS. It's diagnosis is arrived at by first eliminating celiac disease.

Third, there is something called an endoscopy with a biopsy that can be done to microscopically examine the villi of the small bowel to check for damage. Not sure physicians will be willing to do that one on a child so young. It would also require him having been consuming regular amounts of gluten for at least two weeks before the scoping. It is done by running a scope through the mouth, stomach and into the small bowel.

Fourth, if your son improved so dramatically after you took him off gluten, do you need an official diagnosis?

[Scott Adams]

I agree with everything @trents has mentioned. A formal diagnosis might be helpful to keep him gluten-free when he's older, especially during his teenage years when he might stray from it, but during these key developmental years your in control of his diet, so if you've already found the answer, perhaps just keep him gluten-free? Getting a formal diagnosis could by costly to his health and development, as it could force him to eat gluten for a few more months.

Also, perhaps you should get screened for celiac disease before you go gluten-free?

[Maimoudaki]

10 hours ago, trents said:

Welcome to the forum, Maimoudaki!

First, your putting him on a gluten free diet two weeks before the blood antibody test may have compromised the test. The antibody tests are designed to measure inflammation markers in the blood characteristic of celiac disease. If you remove gluten, the inflammation subsides and the markers for it begin to disappear. You would need to put your son back on regular amounts of gluten for 6-8 weeks before any retesting is done for blood antibodies.

There are other blood antibody tests that can be done besies the tTG-IGA, though the tTG-IGA is the most common one ordered by physicians. However, sometimes it misses those who truly do have celiac disease. So there are other blood antibody tests that can be run that check for different inflammatory markers. Here is an overview: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The term for running a battery of blood antibody tests is called "a full celiac panel." Young children's immune systems are immature and often do not react the same way as that of adults so the full celiac panel can catch the disease when the tTG-IGA is negative.

Second, your child could have NCGS (Non Celiac Gluten Sensitivity) which would produce many of the same systems without damaging the villi of the small bowel as does celiac disease. The antidote is the same: complete elimination of gluten from the diet. There is no test for NCGS. It's diagnosis is arrived at by first eliminating celiac disease.

Third, there is something called an endoscopy with a biopsy that can be done to microscopically examine the villi of the small bowel to check for damage. Not sure physicians will be willing to do that one on a child so young. It would also require him having been consuming regular amounts of gluten for at least two weeks before the scoping. It is done by running a scope through the mouth, stomach and into the small bowel.

Fourth, if your son improved so dramatically after you took him off gluten, do you need an official diagnosis?

Hello and thank you for your detailed reply. This forum is very helpful and much needed during what it seems to be “a pandemic of defensive medicine” …especially for coeliacs as it feels like an ignored group of patients to me. 

Regarding your first comment, I appreciate your viewpoint of having waited for the appointment before getting gluten out of his diet but I would like to emphasise again how malnourished he is already, his weight is below the 0.4th centile! If I could have started it earlier I would, no matter what their diagnosis process is! I am not willing to compromise his growth as his gut will need time to heal anyway and every day counts for his growth!

I am certain that his TTG result is not accurate and I really think his doctor should have asked for the full panel. Now the more we progress into the gluten free diet the less likely he is to get a positive result if I have understood it correctly?

I really think his small bowel is damaged because he does not seem to grow despite us being very proactive and giving him good volumes and nutritious diet! Also I had been giving him iron supplements from 6 months and now they tell him his iron is low!! How can this be!??

I wouldn’t like him undergoing endoscopy this young for obvious reasons. Too scared to go for anaesthesia etc.

Last but not least, yes I believe we need the diagnosis because as he grows he will be asking for more information/evidence and also childcare settings may not be very diligent about it. And if that happens we can’t even monitor the relapse or his nutritious state. In addition, as a teenager, the explanation might have more weight coming from a healthcare professional than just his parents.

[Maimoudaki]

7 hours ago, Scott Adams said:

I agree with everything @trents has mentioned. A formal diagnosis might be helpful to keep him gluten-free when he's older, especially during his teenage years when he might stray from it, but during these key developmental years your in control of his diet, so if you've already found the answer, perhaps just keep him gluten-free? Getting a formal diagnosis could by costly to his health and development, as it could force him to eat gluten for a few more months.

Also, perhaps you should get screened for celiac disease before you go gluten-free?

Thank you for your reply. 
Yes I will definitely keep him gluten free! He has gained 250 grams within a two week period! I worry that without a formal diagnosis childcare settings will not be very strict/careful about it if that makes sense. Also as a teenager, a doctor will convince him better than just his parents I believe.

I have also started a gluten free diet myself because of family planning and aiming for a second baby soon and the pressure of it all. I wonder however if my blood test is more likely to still be positive and therefore helpful for a diagnosis? Shall I ask for a full panel for myself? 
Can they deny this and just order TTG?

[trents]

You asked, "Now the more we progress into the gluten free diet the less likely he is to get a positive result if I have understood it correctly?" This is true.

Have you considered getting genetic testing done for you and for your son to check for the celiac gene? Have one or both genes does not guarantee someone will develop active celiac disease but not having either gene will rule celiac out.

Also, is your son still on dairy? Studies have shown that for some people the dairy protein casein can blunt small bowel villi just like celiac does. It is very common for celiacs to be intolerant of dairy as well as gluten. After substantial healing of the villi they sometimes can go back to dairy, at least in limited amounts.

In addition, the protein in oats (avenin) generates a reaction like gluten does for 10% of celiacs.

Finally, an this is something I really want you to take seriously, have him checked for something called "pernicious anemia." There are cells in the stomach lining called parietal cells that secrete a substance called "intrinsic factor." For people with pernicious anemia, the parietal cells are non functional, likely having been destroyed by some autoimmune process. This is important because without intrinsic factor you cannot assimilate vitamin B12 orally or in your diet. Without B12 your body cannot take up iron from supplements or from food and this results in anemia. The only therapy for this is to get regular B12 injections. Another issue with this is that B12 deficiency can be masked by people taking folic acid (folate) in supplements or vitamins. So testing for low B12 levels can be dodgy.

I think you cannot worry about the consequences for the future of not having an official celiac diagnosis. You need to focus on what you need to do for your son's health now.

[Scott Adams]

15 hours ago, Maimoudaki said:

I worry that without a formal diagnosis childcare settings will not be very strict/careful about it if that makes sense.

I'm not sure they would ever have to know this, at least in the USA nobody has legal access to anyone's health records unless that access is granted. If you told them he has celiac disease I doubt they'd need to verify it, but if they did just tell them it is non-celiac gluten sensitivity. 

[Maimoudaki]

16 hours ago, Scott Adams said:

I'm not sure they would ever have to know this, at least in the USA nobody has legal access to anyone's health records unless that access is granted. If you told them he has celiac disease I doubt they'd need to verify it, but if they did just tell them it is non-celiac gluten sensitivity. 

Thank you. We live in the UK. When I told the nursery manager about gluten free diet because I am concerned, they said that they will accommodate for now but they are waiting for some formal correspondence from NHS healthcare professionals. This has put extra worry/pressure on me as it sounds like until they have that, they won't be very strict. Which is so irrational! Why should they discriminate for example if someone says we follow a vegetarian/vegan diet they would just do it. Why discriminate a parent who tells them we follow a gluten-free diet?? Non-sense....

[Maimoudaki]

On 2/4/2022 at 5:27 AM, trents said:

You asked, "Now the more we progress into the gluten free diet the less likely he is to get a positive result if I have understood it correctly?" This is true.

Have you considered getting genetic testing done for you and for your son to check for the celiac gene? Have one or both genes does not guarantee someone will develop active celiac disease but not having either gene will rule celiac out.

Also, is your son still on dairy? Studies have shown that for some people the dairy protein casein can blunt small bowel villi just like celiac does. It is very common for celiacs to be intolerant of dairy as well as gluten. After substantial healing of the villi they sometimes can go back to dairy, at least in limited amounts.

In addition, the protein in oats (avenin) generates a reaction like gluten does for 10% of celiacs.

Finally, an this is something I really want you to take seriously, have him checked for something called "pernicious anemia." There are cells in the stomach lining called parietal cells that secrete a substance called "intrinsic factor." For people with pernicious anemia, the parietal cells are non functional, likely having been destroyed by some autoimmune process. This is important because without intrinsic factor you cannot assimilate vitamin B12 orally or in your diet. Without B12 your body cannot take up iron from supplements or from food and this results in anemia. The only therapy for this is to get regular B12 injections. Another issue with this is that B12 deficiency can be masked by people taking folic acid (folate) in supplements or vitamins. So testing for low B12 levels can be dodgy.

I think you cannot worry about the consequences for the future of not having an official celiac diagnosis. You need to focus on what you need to do for your son's health now.

Hello trents and thank you again,

Yes I begged them to do genetic testing on my son when they bled him for TTG but they said it was not part of the protocol. As if it is a joy to them to keep bleeding tiny toddlers on regular intervals...what can I say?!  So frustrating.... 

I have booked an appointment with my GP next week and I will ask for a full coeliac screen panel and genetic testing for myself; I really hope they will accept! I will be devastated if they refuse again for me as well. I have been reading your articles here and I have all the symptoms...the muscle wasting, the brain fog, the pins and needles, you name it... It is just a joke that we have to fight for the obvious. 

Regarding the vit B12 thank you, that was useful to know. I wonder however whether his low iron is just directly related to his coeliac? Because equally coeliac can prevent iron absorption and he seemed to be clearly in a non absorbing state given his muscle wasting and not growing etc. I will mention it to his doctors though, thank you.

He is eating full dairy still. He always has been. But since stopping gluten the bloating has disappeared. No diarrhoea. So I am guessing he is not lactose intolerant? I am scared of cutting out such a nutritious source like the dairy which he seems to enjoy, if he doesn't have any symptoms.

[trents]

Dairy can be a problem in two ways. Lactose intolerance is one. Lactose intolerance is the inability to break down the sugar in milk, lactose. But there can also be an intolerance to the milk protein casein, which can cause villi blunting in some individuals, as does celiac disease.

I mentioned pernicious anemia because I understood you to say you had already put your son on a gluten-free diet and, though he was improving in other ways, his iron had not improved. Another thing about iron absorption you might consider is the fact that it is absorbed better in an acidic environment. It can be helpful to have your son drink some orange juice when he takes his iron supplement or give him a chewable vitamin C tablet with it.

I'm not sure what your financial situation is but there are companies that sell at home celiac panel test kits that involve just a finger prick sample. Imaware sells one for about $100 USD. There are also companies that do genetic testing (including for the celiac genes). A popular genetic test company is 23and me. But I'm not sure how the sample is taken.

https://www.cnet.com/health/personal-care/8-at-home-health-kits-to-test-for-celiac-disease-fertility-and-more/

https://www.23andme.com/en-int/

 

 

[Wheatwacked]

In 1976 my infant son was diagnosed by biopsy with Celiac Disease shortly after early weaning. His doctor chose Nutramagen over Similac because it is hypoallergenic and has the most complete vitamins and minerals. By the way there are currently lawsuits on Similac and other milk based infant formulas as a cause of necrotizing enterocolitis. https://phelanpetty.com/blog/cows-milk-based-formulas-including-enfamil-and-similac-linked-to-necrotizing-enterocolitis-nec-in-premature-babies/.  Unfortunately, at 18 months I don't think Nutramigen® is an option for your son and it is expensive. Also, I read once it is being discontinued.

He had a complete recovery; went from Nutramigen® to a gluten free diet. Now 46 years old, even though not gluten free from 5 years old (bad advice from respected sources) he has been a professional ocean lifeguard since graduating high school. Have Hope.

The key to recovering from acute Celiac Disease is gluten free diet and a proactive diet full of ALL of the essential vitamins and minerals. Find a nutritionist very familiar with Celiac Disease because although trained to Diagnose it most doctors do not understand the importance of nutrition in recovery. Not their job. Celiac disease is a disease of malabsorption eventually leading to malnutrition. I read a study linking Choline deficiency as a trigger. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7761552/ 

Here is a good article   https://kidshealth.org/en/parents/celiac-disease.html