5 year old daughter diagnosis questions

[Jessica K.]

Hello All,

Last week I took my 5 year old daughter to the doctor because she constantly tells me her tummy hurts.  She has complained of frequent tummy aches for a long time now and every time I mentioned it to the doctor they listened to her bowels and felt around and said she was ok.  This time they took an x-ray which showed moderate constipation.  I asked for a Celiac blood panel.  Her tTG IgA level was greater than 250 (with under 15 being the normal limit).  I was able to get her into GI next week.  After extensive research on my end, I asked her doctor to order the EMA blood test which we had drawn yesterday.  It is my understanding that if the EMA is also positive she will not need the biopsy due to her extremely high IgA levels.  Does this sound correct?  Obviously, I will follow through with GI and take their recommendations into consideration; however, I would prefer to pass on the biopsy if at all possible.  Her other symptoms include low iron, frequent bloody noses, frequent tiredness, frequent vomiting due to food aversions (picky eater), and very moody behavior.  My main question is.... what are the chances this is not Celiac Disease?  It seems so obvious to me.  They want her to continue to eat gluten for now which feels so wrong to me given everything I know now...... 

[trents]

Welcome to the forum, @Jessica K.!

The chances are very slim, about 5%,  that her high tTG-IGA levels are high dure to something else besides celiac disease: 

But if you want an official diagnosis, you may have to go forward with a biopsy which, as you know, would require your daughter to continue gluten consumption in order to ensure reliability of results unless, that is, the biopsy could be scheduled very quickly before significant healing takes place in the villous lining. And children heal quickly. If you don't need an official diagnosis just go forward with a strict gluten free diet. The problem with that is that at some point in the future your daughter may rationalize her celiac disease away and start cheating on the diet. Some people just need an official dx in order to stay on the wagon. I'm not sure where you live but in the U.K. her high tTG-IGA scores would likely qualify her for an official dx of celiac disease without a biopsy and there would also accrue government subsidies for gluten-free food and follow-up medical care. On the other hand, if she has been living with these discomforts this long it might be wise to continue as is until a biopsy could be done. It doesn't sound like she's in acute medical distress.

[Jessica K.]

59 minutes ago, trents said:

Welcome to the forum, @Jessica K.!

The chances are very slim, about 5%,  that her high tTG-IGA levels are high dure to something else besides celiac disease: 

But if you want an official diagnosis, you may have to go forward with a biopsy which, as you know, would require your daughter to continue gluten consumption in order to ensure reliability of results unless, that is, the biopsy could be scheduled very quickly before significant healing takes place in the villous lining. And children heal quickly. If you don't need an official diagnosis just go forward with a strict gluten free diet. The problem with that is that at some point in the future your daughter may rationalize her celiac disease away and start cheating on the diet. Some people just need an official dx in order to stay on the wagon. I'm not sure where you live but in the U.K. her high tTG-IGA scores would likely qualify her for an official dx of celiac disease without a biopsy and there would also accrue government subsidies for gluten-free food and follow-up medical care. On the other hand, if she has been living with these discomforts this long it might be wise to continue as is until a biopsy could be done. It doesn't sound like she's in acute medical distress.

Thank you for your insight.  We live in the USA,  but it looks like the current research/recommendations support a no biopsy official diagnosis in children if their IgA levels are >10x the upper limit of normal and the EMA is positive....but I could be wrong as I am not a doctor.  I could be talked into the biopsy; however, working in a school and knowing 2 healthy children who have passed away as a direct result of being put under makes me VERY hesitant :(

[trents]

Be aware that the EMA is a less sensitive test than the tTG-IGA. The EMA is very specific but less sensitive so there is a possibility that it could be negative and then you would have one positive and one negative . . . a possible quandary. The EMA was developed early on and has largely been replaced by the tTG-IGA as the tTG-IGA has both good sensitivity and good specificity. The tTG-IGA is also less expensive to perform. I'm think, though, that because your daughter's tTG-IGA scores are so high that there won't be an issue with the lesser sensitivity of the EMA.

[Scott Adams]

In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTG-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease.

According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy:

• Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults
• TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases
• No More Biopsies to Diagnose Celiac Disease in Children!

 

[Jessica K.]

51 minutes ago, Scott Adams said:

In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTG-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease.

According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy:

• Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults
• TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases
• No More Biopsies to Diagnose Celiac Disease in Children!

 

Thank you! I did read this research and some other research with similar findings and recommendations. I have read so much I have lost track of what I have already read and haven’t read 😅 I am trying to be as informed as possible and the wait for her appointment next week is killing me, especially when she is crying saying her belly hurts and I am 99% sure it’s because of the gluten she continues to eat. I just want confirmation from a professional in the field so I can begin her gluten free life and hopefully improve her symptoms. 

[knitty kitty]

@Jessica K.,

Keep your daughter on gluten until the endoscopy is done.  Having an endoscopy now will give a baseline if, heaven forbid, she should have problems in future.  

Try removing dairy from her diet to ease symptoms.  Half of all Celiacs react to dairy as though it were gluten due to molecular mimicry (casein, the protein in dairy, resembles gluten, the protein we react to in CeD).

Have a DNA test done.  Celiac Disease is genetic.  You and all first degree relatives (parents, siblings, children) should be tested as well.  While having the genes doesn't mean activated CeD, if one doesn't have the genes, CeD may not be the cause.  Not all genes for Celiac are known.  Doctors tend to focus on the most common HLA DQ 2 or 8 types, but there are others.  

A hot water bottle may help with the abdominal pain.  The weight of the water can encourage peristaltic action to move food through the intestines and ease constipation.

Have your daughter checked for nutritional deficiencies.  Vomiting, constipation, fatigue, abdominal pain, and "moody behavior" are symptoms of  Thiamin deficiency.  Correcting nutritional deficiencies is important in young children to prevent stunted growth and development. 

Have you thought about whether your whole household will be going gluten free with your daughter?  Emotional support and low cross contamination issues are important in Celiac care.  

Hope this helps!

[Wheatwacked]

 

 

Choline the best food source is eggs helps with gut discomfort.  

 

THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASECarbohydrates should be vigorously avoided except as they occur in the before mentioned milk products.

[Rana Moazzam]

My 5 year old daughter complained about stomach pain for last 4 to 5 months, decided to do her blood test, Report is showing tTG IgA level greater than 250. GP referred for biopsy to further investigate. 

 

[Scott Adams]

Welcome to the forum @Rana Moazzam! Can I ask what her score was, and is the cut off for positive 250? Be sure she keeps eating at least 2 slices of bread worth of gluten daily until the endoscopy is completed.  

 

 

[trents]

1 hour ago, Rana Moazzam said:

My 5 year old daughter complained about stomach pain for last 4 to 5 months, decided to do her blood test, Report is showing tTG IgA level greater than 250. GP referred for biopsy to further investigate. 

 

Welcome to the forum, @Rana Moazzam! Can you share with us what the range used by the lab for negative vs. positive is? Different labs use different scales. There is no industry standard so a score without a scale isn't telling us much.

[Jessica K.]

1 hour ago, Rana Moazzam said:

My 5 year old daughter complained about stomach pain for last 4 to 5 months, decided to do her blood test, Report is showing tTG IgA level greater than 250. GP referred for biopsy to further investigate. 

 

If your test used a similar scale to the one that was used at our lab (over 15 is positive) you may want to consider calling the GI office directly or asking your doctor to take a second blood draw (EMA). If this number is also significantly high, they may consider these two tests a positive diagnosis which would eliminate the endoscopy/biopsy. My daughter’s doctor was comfortable diagnosing her with blood tests alone.  Another one of my children is awaiting the endoscopy/biopsy because her ttg iga was 21.9 (positive but not off the charts positive—— same GI doctor as my other daughter)

[Rana Moazzam]

On 2/27/2024 at 3:28 PM, Scott Adams said:

Welcome to the forum @Rana Moazzam! Can I ask what her score was, and is the cut off for positive 250? Be sure she keeps eating at least 2 slices of bread worth of gluten daily until the endoscopy is completed.  

 

Test Name(s)
Tissue Transglutaminase
AbIgA
Result
>250.0
Abn Reference Range Units
A <120
U/mL
Date/Time Completed Status
2024-02-26 11:10:24 F

 

Test Name(s)
Tissue Transglutaminase
AbIgA
Result
>250.0
Abn Reference Range Units
A <120
U/mL
Date/Time Completed Status
2024-02-26 11:10:24 F

[Scott Adams]

If I am reading this correctly it looks like she's at least 2x the cut off, so and if so, she likely has celiac disease. What has her doctor said about this result? Have they scheduled an endoscopy? 

[Jsingh]

Hi Jessica, 

I could have written this myself, except I had no idea about Celiac disease before my daughter was diagnosed. If I did, I would have perhaps figure out when she was three, that’s when her asymptomatic began. 
 

yes, it is correct that new guidelines state that in case of children whose antibodies are ten times higher than normal, biopsy is not required and official diagnosis can be made on that alone. That’s what our doctor did, but my daughters test included the whole celiac panel so EMA was also included and that came abnormal as well. 
 

My five year old was diagnosed early this year and she is following gluten-free diet and she is absolutely a different person now! Tummy aches gone and mood has improved like she has a new personality! 

[Rana Moazzam]

2 hours ago, Scott Adams said:

If I am reading this correctly it looks like she's at least 2x the cut off, so and if so, she likely has celiac disease. What has her doctor said about this result? Have they scheduled an endoscopy? 

Yes she got referred to a specialist and the average wait time is 8 months. It's hard to feed your kid with gluten when you're sure it is not good for her.

[Scott Adams]

You could put her on a gluten-free diet, and then for at least 2 weeks before her endoscopy put her back on a heavy gluten diet, but be sure to discuss this with her doctor. 

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day: