Daughter test results

[Stephk774]

Help please worried mummy. My daughter is 4 year old has alot of illnesses infections over the 4 years always complaining of tummy pain constipation sleepless nights moddy. My partner my (daughter dad) is celiac so after alot of doctor’s appointments they did bloods which has shown Tissue transglutaminase antibody and ser tiss transglutaminase level 14 u/ml and also endomysial iga antibody weak positive. She has been refered to gastro but I think I’m trying to look for other alternatives hoping and praying it’s not. are these a very good sign that she has celiac or could this be something else oveasly doctor said this is likely but wanting more opinions as it’s another 5 weeks to wait for her appointment and im worrying as us mummy’s do. Any help please would be appreciated 

[trents]

Welcome to the forum, Stephk774!

By "Tissue transglutaminase antibody" I take it you are referring to the tTG-IGA. The test result was 14 m/ml. Can you also give the reference range used for that one? Without the reference range for negative vs. positive we can't comment much since different labs use different ranges. There is no industry standard. We assume you mean that one was positive. It is the most common celiac disease test ordered by physicians as it combines good specificity with good sensitivity. The endomysial iga or "EMA" was also positive but a weak one. The EMA is very specific for celiac  disease. Was there also a "total serum IGA" run? This latter one is an important one to run on young children as if the total IGA is low it will drive other IGA test scores lower. There are other tests that ought to be run on young children to provide a bigger picture of what her immune system is reacting to:

"For young children (around age 2 years or below), Deamidated Gliadin IgA and IgG antibodies should also be included." https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ IMO, 2 years old is a conservative age cutoff.

There is a strong possibility, based on this limited testing, that your daughter has celiac disease. However, children have immune systems that are underdeveloped and in flux which can give irregular results. Children who actually do have celiac disease often test negative for the tTG-IGA and EMA but positive for some other secondary tests that are less specific. You might request a larger variety of tests as mentioned above and in the link I supplied. But "mummy" if you are in the UK the system is pretty inflexible as to what doctors can order. They are limited by very tight protocols. The next level of testing after blood antibody's are done is the endoscopy with biopsy, hence the referral to a GI doc.

There is also the option of starting her on a strict gluten free diet and see if she improves. Then you would know if gluten is the issue and it would be narrowed down to celiac disease or NCGS (Non Celiac Gluten Sensitivity), the latter being 10x more common than celiac disease, shares many of the same symptoms with celiac disease, but for which there is no good way to test.

Edited May 18, 2023 by trents

[Stephk774]

There was a full blood count and lots of other bloods done is there a way in which I can upload these for u to see plz as I have a copy of these 

[trents]

23 minutes ago, Stephk774 said:

There was a full blood count and lots of other bloods done is there a way in which I can upload these for u to see plz as I have a copy of these 

There is a very short editing time frame for member posts in which you can include pictures and attachments. When the time window closes, you must start a new post window if you want to add something. Use the three dots in the upper right corner to edit and then use the drag and drop tool in the lower portion of the edit box if you want to include the data as a screen capture.

[Stephk774]

I’m on iPhone so not allowing me to upload so I’ll do my best here at trying to read these results lol. So yes TTG results is 14 u/ml range is 0.00-10.00u/ml and the Endomysial iga antibody says “weak positive iga ttg and iga endomysial antibodies both weak positive. Possibility of coeliac disease suggest referral to gastroenterologist”  so now we await her next appointment I’m fingers crossed that somehow this is wrong and we get a negative but with all her symptoms and dad also having coeliac in not feeling very positive. 

[RMJ]

With symptoms, family history and positive TTG and Endomysial antigen tests it is likely she has celiac disease.  It would be best NOT to remove gluten from her diet now as that could affect any additional testing by the gastroenterologist.

While celiac disease isn’t fun, it can be completely taken care of with a gluten free diet, and if she has it, it has been caught early before irreparable damage has been done.

[Stephk774]

Yes I will not start any gluten and wheat free diet till after the biopsy as I know this will give false readings. Although it is not what we wanted I’m just glad we have 8 year experience of finding products and getting to know what is safe and what is not also may make her life a little easier knowing she’s not the only one in our house on this diet as daddy too. Just so hard for a child to understand that she can’t have the same as other children and school dinners are also going to be off the menu until we can get a plan together thankyou for all your help

[Wheatwacked]

When diagnosis is completed and she starts gluten free diet, I suggest you also start. You may be surprised at, once gluten withdrawal is passed, at how much better you feel.  In addition it will simplify life in your home if everyone eats the same. And she will be following yours and dad's good examples.  There is no medical reason to eat wheat.  Wheat is good and profitable for the economy, pharmaceutical companies, and the processed food industry. Not good for humans to consume.

Odds are your child does not have seven different diseases causing seven different symptoms.

On 5/18/2023 at 1:55 PM, Stephk774 said:

Just so hard for a child to understand that she can’t have the same as other children

But she will be eating same as you, so you don't have to deal with "do as I say, not as I do". Mom's influence is stronger than that of school friends at this age.

My son was diagnosed when he was weaned. He was prescribed Nutramigen Infant formula, because it is the most hypoallergenic and nutrititious and the only infant formula with choline, essential for fat digestion and nerve transmission and a major percentage of mitochondrial membranes.  Six months on that, then GFD grew up strong and healthy. That was in 1976.  I see they now have a toddler formula.  Ask your doctors.

[Stephk774]

1 hour ago, Wheatwacked said:

When diagnosis is completed and she starts gluten free diet, I suggest you also start. You may be surprised at, once gluten withdrawal is passed, at how much better you feel.  In addition it will simplify life in your home if everyone eats the same. And she will be following yours and dad's good examples.  There is no medical reason to eat wheat.  Wheat is good and profitable for the economy, pharmaceutical companies, and the processed food industry. Not good for humans to consume.

Odds are your child does not have seven different diseases causing seven different symptoms.

But she will be eating same as you, so you don't have to deal with "do as I say, not as I do". Mom's influence is stronger than that of school friends at this age.

My son was diagnosed when he was weaned. He was prescribed Nutramigen Infant formula, because it is the most hypoallergenic and nutrititious and the only infant formula with choline, essential for fat digestion and nerve transmission and a major percentage of mitochondrial membranes.  Six months on that, then GFD grew up strong and healthy. That was in 1976.  I see they now have a toddler formula.  Ask your doctors.

We have our referral for the 19th June but it doesn’t say anything about the biopsy as of yet so I’m guessing that won’t be done on that day so means more waiting. I’m actually unsure if I want her to have the biopsy as if there saying there 98% sure that’s what it is if much rather start the diet and see how we go as it’s less invasive than the biopsy procedure ( not sure if they’ll be happy about that ). She been sick afew time this last week randomly and only once at a time then feels better afterwards. 19th June isn’t that long really but when she’s unwell all the time it took seems like a long time to have to wait. 

[trents]

On 5/18/2023 at 10:55 AM, Stephk774 said:

Yes I will not start any gluten and wheat free diet till after the biopsy as I know this will give false readings. Although it is not what we wanted I’m just glad we have 8 year experience of finding products and getting to know what is safe and what is not also may make her life a little easier knowing she’s not the only one in our house on this diet as daddy too. Just so hard for a child to understand that she can’t have the same as other children and school dinners are also going to be off the menu until we can get a plan together thankyou for all your help

In some countries, e.g. the UK, there are subsidies to offset the cost of gluten free food and follow-up care benefits as well if there is an official diagnosis of celiac disease. In those cases, there is extra incentive to go forward with the endoscopy/biopsy and not short circuit the diagnostic process.

[Stephk774]

On 5/18/2023 at 12:45 PM, Stephk774 said:

Help please worried mummy. My daughter is 4 year old has alot of illnesses infections over the 4 years always complaining of tummy pain constipation sleepless nights moddy. My partner my (daughter dad) is celiac so after alot of doctor’s appointments they did bloods which has shown Tissue transglutaminase antibody and ser tiss transglutaminase level 14 u/ml and also endomysial iga antibody weak positive. She has been refered to gastro but I think I’m trying to look for other alternatives hoping and praying it’s not. are these a very good sign that she has celiac or could this be something else oveasly doctor said this is likely but wanting more opinions as it’s another 5 weeks to wait for her appointment and im worrying as us mummy’s do. Any help please would be appreciated 

So thought I’d give u all an update on how our first appointment went at gastro. Doctor was amazing and asked all about my daughters health in general also looked at the bloods results and because the ttg came back at 14 and the range was 0-10 it’s only just slightly over so he gave us 2 options either go straight for biopsy or repeat blood works which is what we opted for first. I do believe my daughter hasn’t had this for long if she has as last September she was tested for it and it was negative so could that be why the results are low because she may have only just got celiac. We get the results of this test a week on Monday now if they come back as the same sort of range we will have to progress with biopsies but if there a lot higher which I dowt then we may get a diagnosis. So my question is does the results go up over time or not does anyone know 

[RMJ]

30 minutes ago, Stephk774 said:

So my question is does the results go up over time or not does anyone know 

Unfortunately there’s no clearcut answer to your question.  Antibodies will often go up with continued exposure to the antigen, in this case gluten.  But sometimes they’ll plateau or even go down.

In your daughter’s case, I hope they’ll go up so you can skip the biopsy and start treatment (gluten free diet)! 

[trents]

Yes, like most lab values there will likely be some variation from one lab draw to another. The body is composed of a lot of interdependent systems and changes in any one of them can affect the others. Also, in this case, something like variations in the amount of gluten having been consumed in the weeks leading up to the blood draw compared to previous blood draws can have an effect on scores. Do you know what celiac antibody tests the gastro doc ordered? Hopefully, he ordered more than just the tTG-IGA, including a total serum IGA. With young children it is wise to also order DGP IgA and IgG: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/  and 

 

[Stephk774]

Thankyou yes I belive all this has been ordered on her bloods as well as diabetes bloods as her father is also celiac and diabetic so just to be on the safe side check them all. 

[Stephk774]

4 hours ago, RMJ said:

Unfortunately there’s no clearcut answer to your question.  Antibodies will often go up with continued exposure to the antigen, in this case gluten.  But sometimes they’ll plateau or even go down.

In your daughter’s case, I hope they’ll go up so you can skip the biopsy and start treatment (gluten free diet)! 

Yes I really don’t want her to be celiac but would love some answers now to why she’s always poorly and if we could sort it her life will probably be 100% better as she poorly most days with tummy upset. I really don’t want this biopsy for her. But if I have to then so be it