how does this seem to you

[florida2001]

Im new to this group and my 8 year old is going for colonoscopy and endoscopy in 2 weeks to confirm diagnosis. I am so confused and scared. Her symptoms started or I noticed about 2 months ago. She had loose .mushy ,diarrhea. Her bowl movement is once sometimes twice a day. there were days she go every other day. Sometimes she went and needed to go back to finish it. She sometimes complained her stomach hurts, but that is only before she goes poop. After she was done no more pain. She eats and drink everything, she is very active. We started probiotic and seems she is having solid stool back again. Doctor ran all the blood and stool test and this are the findings
WBC 12.9 little high
hemoglobin, MCV, MCH, MCHV low
IgA 321 normal range 51-220
CRP 49 normal range 0-9
CALPROTECTIN 653
occult blood fecal positive
H pylori negative
parasites, bacteria, viruses GI panel not detected
c difficile toxin negative
endomysial antibody IgA negative

tTg IgA <2

How does this seem to you? Last week she goes poop once sometimes twice a day and has normal solid stool and no pain at all. I am confused now what shuld I do.
thank you

 

[Wheatwacked]

  On 2/6/2024 at 2:45 AM, florida2001 said:

IgA 321 normal range 51-220

Expand Quote  

Are they planning to do the endoscopy looking specifically for Celiac?  Despite the agony, be sure she continues eating gluten, about 10 grams a day until all testing is complete.  The igA test is 95% specific and 95% accurate for Celiac Disease, so even a negative biopsy does not negate that positive blood test.

the proof will come when the testing is complete and she improves on Gluten Free Diet with the appropriate vitamin replenishment.

In case you haven't already, read this about a 10 year old. 

 

[knitty kitty]

Welcome to the forum, @florida2001,

Have you changed her diet?  Did you start the probiotics before or after the blood test was drawn?  I suggest you stop the probiotics since her white blood cell count is high. 

Have you requested a Full Celiac panel of blood tests?  These should include DGP IgA and IgG because children's immune systems are immature and may not be producing tTg IgA antibodies yet.  Also anemia and Thiamine deficiency can cause false negatives on tTg IgA tests.  

Is her doctor planning on taking biopsy samples during the endoscopy to check for Celiac Disease?

Ask for an Erythrocyte Transketolase test to check Thiamine level.  Thiamine can help with digestion and has anti-inflammatory properties.  Low thiamine can cause diarrhea or constipation and abdominal pain.

Keep us posted on your progress!

[trents]

Her stool texture (before probiotics) and stomach pain, as well as her low iron and red blood cell values (hemoglobin, MCV, MCH, MCHV) could be caused by celiac disease. The positive positive fecal occult blood test could also explain these things as it suggests she has bleeding in the GI track somewhere. The two blood tests for celiac antibodies (EMA, tTG-IGA) are negative so that does not support celiac disease, especially since her total IGA is in the normal range. However, we sometimes do see negative antibody values but positive biopsies. And, as knitty kitty explained there are other blood antibody tests that can be run for celiac disease that were not ordered. This can be important to do in children since their immune systems are immature and sometimes don't respond the same way as adults would to the tTG-IGA and the EMA (endomysial antibody IgA).

Do you know if they will be taking biopsies of her small bowel lining during the endoscopy to check for the damage caused by celiac disease or is this just a routine endoscopy checking for peptic ulcers, etc.? I would ask about that. They might as well biopsy and check for celiac disease while they are in there.

[florida2001]

  On 2/6/2024 at 3:27 AM, knitty kitty said:

Welcome to the forum, @florida2001,

Have you changed her diet?  Did you start the probiotics before or after the blood test was drawn?  I suggest you stop the probiotics since her white blood cell count is high. 

Have you requested a Full Celiac panel of blood tests?  These should include DGP IgA and IgG because children's immune systems are immature and may not be producing tTg IgA antibodies yet.  Also anemia and Thiamine deficiency can cause false negatives on tTg IgA tests.  

Is her doctor planning on taking biopsy samples during the endoscopy to check for Celiac Disease?

Ask for an Erythrocyte Transketolase test to check Thiamine level.  Thiamine can help with digestion and has anti-inflammatory properties.  Low thiamine can cause diarrhea or constipation and abdominal pain.

Keep us posted on your progress!

Expand Quote  

thank you for input and I definitely ask the about the additional testing and biopsy for celiac. May I ask why are you suggesting stopping probiotics when WBC are high? just curious. thank you

[knitty kitty]

@florida2001,

The probiotics have thrown another variable into the mix.  

You haven't explained when the probiotics were started and why. 

Was the probiotic started before the test that showed high WBC?  Is the high WBC result because of the probiotics?  

Was the probiotic started after  the high WBC test result?  Then why was the WBC high before the probiotics?  

Did the doctor recommend or prescribe the probiotic?  

The probiotics are changing your daughter's symptoms.  Is the use of probiotics simply a bandaid or are there other functional problems going on?  

Is your daughter still consuming 10g of gluten every day prior to the endoscopy?   Lowering the amount of gluten can affect antibody production and endoscopy results.  

Has a genetic test for known Celiac genes been done?  Since Celiac Disease is genetic, first degree relatives (parents, siblings) should be tested as well.  

Just gathering puzzle pieces...  

[florida2001]

  On 2/6/2024 at 2:46 PM, knitty kitty said:

@florida2001,

The probiotics have thrown another variable into the mix.  

You haven't explained when the probiotics were started and why. 

Was the probiotic started before the test that showed high WBC?  Is the high WBC result because of the probiotics?  

Was the probiotic started after  the high WBC test result?  Then why was the WBC high before the probiotics?  

Did the doctor recommend or prescribe the probiotic?  

The probiotics are changing your daughter's symptoms.  Is the use of probiotics simply a bandaid or are there other functional problems going on?  

Is your daughter still consuming 10g of gluten every day prior to the endoscopy?   Lowering the amount of gluten can affect antibody production and endoscopy results.  

Has a genetic test for known Celiac genes been done?  Since Celiac Disease is genetic, first degree relatives (parents, siblings) should be tested as well.  

Just gathering puzzle pieces...  

Expand Quote  

hi the probiotic were recomended by gastroenterogist after all blood and stool test, she also put her on iron suplemments. I did not change any gluten intake, the only test for celiac was from stool and this are the results

Endomyslial antibody IgA Negative

t transglutaminase tTg IgA <2

they want to do endoscopy and colonoscopy to find out where is the problem. She mentioned IBD too, but nothing has been confirmed. Her symptoms now are stomach pain only before she has bowl movement, since she started probiotic no more diarrhea or loose stool. she has solid soft pieces, Goes 1-2x day poop.

we have no family history of celiac .

[knitty kitty]

Iron supplementation can cause constipation.  That may explain why her stools have firmed up.  

The DGP IgG and IgA tests should still be done since she is young and may not be producing enough tTg IgA due to anemia.  TTg IgA stays mostly in the small intestine during the early stages of celiac disease.  

One must have the genes for Celiac Disease.  If a genetic test shows she doesn't have any of the genes, then Celiac Disease may be ruled out.

Many people think they don't have symptoms of Celiac Disease, but they may be dismissing subtle symptoms as "normal".  

Edited February 7, 2024 by knitty kitty
Add more information

[Wheatwacked]

  On 2/6/2024 at 2:45 AM, florida2001 said:

IgA 321 normal range 51-220

endomysial antibody IgA negative

tTg IgA <2

Expand Quote  

 

What is the difference between Iga and tTg Iga?

[trents]

  On 2/6/2024 at 7:17 PM, Wheatwacked said:

 

What is the difference between Iga and tTg Iga?

Expand Quote  

By "IGA" I'm sure total IGA is meant.