7 Year Old, Symptoms And Negative Blood Test

[mum2girls]

I posted this and another question on the Pre-diagnois forum before I realised there was a forum specifically for children,  hope it's okay to re-post here.

 

Apologies for all the questions.   These are the tests the Doctor ran to rule out Coeliac Dissease for my 7yo,  would these not be considered definitive?  I don't even understand the results of these ones, if anyone could explain them to me, I would greatly appreciate it.    

 

Are there other tests which could provide more information or which are more accurate?   I am seeing a gastroenterologist on Tuesday,  but as we are based in the Middle East,  I am always a bit unsure about the competencies (medical & laboratory) and experiences in this part of the world. 

 

Thank you

 

Coeliac Screen :- 

 

Endomysial Antibodies - Negative

Tissue Transglutaminase  - 0.10 u/ml (ref range 0.0 -10.0)

Immunoglobulin A - 1.35 g/L ( ref range 0.34 - 3.05)

 

There are the symptoms she has had for 18 months,   the above celiac tests ruled out coeliac and lactose intolerance was also negative.

 

Huge bloated stomach (not permanently, but regularly)

Diarrhea and constipation

Stomach cramps

Headaches

grumpling stomach

lots of gas,  (big burps and really bad flatulence)

Flatulence often accompanied by wet poo stain in underwear

complains of 'heart pain'

fast heartbeat

Extremely pale

Dark circles underneath eyes

joint and muscle pain

Just had 7 cavities filled

very yellow tooth enamel on new teeth

bad beath

poor appetite, but recently an increased appetitie

can be very emotional

urgency to urinate (recent past 2 weeks, often leaving a puddle on the bathroom floor)

stoools that often look greyish

 

Everything I read this points to coeliac symptoms,  but noone in the family has been diagnosed with coeliac.  I have Graves disease, as does my sister and Mum, and i think my sister has some gluten intolerance, but not tested.    Autoimmune issues on my husbands side of the family, include Lupus.  

 

Thank you.

 

[Cara in Boston]

My son was negative on the most common Celiac blood tests but was positive on the two that dealt with IgG (rather than IgA).  If he had not been given the complete panel of tests, we would have missed it.  He also had no classic symptoms.  The doctors were puzzled, but we got our answer when he had a "highly positive" biopsy after an endoscopy.  His symptom (erratic behavior changes) went away within days of being gluten free - it was amazing.

 

Your child has a lot of the classic symptoms and it looks like you only got a few of the possible blood tests.  

 

If your doctor does not want to test further, you can always just try the diet and see if it works.  Our doctor considers that the "final test" for kids anyway, since the other tests are not always accurate with children.  If you see improvement, stick with it.

[mum2girls]

Thank you for the response Clara.

 

We had the Gastroenterologist appointment on Wednesday,  and she said the same as you, that the Paeditrician failed to run one of the tests, I think it was the IGg, so she would not rule out celiac based on the results of those tests.

 

She did an ultrasound of my daughters intestine and said she could see severe inflammation, along with lots of gas. (She showed me some white things floating around,)   She said she would see this kind of inflammation in a child with Celiac and Lactose intolerance, but it could also be caused by a parasite, which is apparently very common where we are now living.  My DD is now on an antibiotic Flagyl for 10 days.

 

She ran the Celiac test again along with the full bloods,  I am awaiting the results of the Celiac test, but we got the other tests back and everything was normal, other than a few which were slightly below minimum levels and which the nurse said was not significant.  

 

The MCV and MCH were slightly below the minimum of the normal range.   All the other Blood count results were borderline low, but in the normal range.   So I am hoping that is positive as nothing indicates Anemia.    W also did a Stool test and awaiting results of that too.   

 

I am hoping it is a parasite infection and we can clear it up and move on.     So far though,  we haven't seen any improvement in her symptoms, although she doesn't seem to be as deathly pale as she has been.

 

Thanks for you advice and sharing your experience. 

[Cara in Boston]

Again, even if the blood tests are still negative, you have nothing to lose by trying the diet.  Give it three months and see if you see improvement.  Also, Celiac damage can cause people to be (temporarily) lactose intolerant.  This usually goes away when the intestines have had a chance to heal.

[nvsmom]

My kids were also negative on the only test they were given but two had symptoms of a gluten sensitivity so we are all gluten-free now.  My boys are doing better so we haven't regretted it.

[mum2girls]

Just to give an update :-

 

The Gluten test run by the Gastro came back negative,  very negative, so the Dr. felt we could rule out Gluten.     The follow up u/s, after finishing the antibiotics, showed that 60% of the inflammation had cleared.    Daughter looked and felt very well, we started her on probiotics.    

 

Then slowly the symptoms began to reappear,   the cramps,  bloated stomach.  bad breath,  pale skin, dark circles under her eyes.     Took her back to Gastro,  u/s showed the inflammation had cleared up, but lots of gas bubbling around and also lymph nodes swollen, which indicated to the Dr. that something is going on.

 

We did the breath test for Lactose and Fructose and DD showed a significant allergy to Lactose and a severe reaction to Fructose,  we still have to do the glucose breath test.    Waiting to see the Dr on Thursday to get her input.

 

Do you think we would be wise to go ahead anyway with the gluten biopsy? or can we be happy that the Lactose and fructose intolerance the culprit for all her issues.

 

Thank you.

[jaggirl47]

Here are my thoughts.

 

Your child's MCV and MCH levels were low which is an indicator of anemia. It does not matter if they were "just below" the level, they were still low. My son has had the same thing on his blood tests for the past 10 years and every doctor has ignored it until now with his current GI doctor. It is a sign of malabsorption.

 

My son tested negative on his celiac panel as well but he just underwent his biopsies yesterday. He has pretty severe growth deficiency issues and is extremely underweight and short. The GI believes that even though his blood tests are negative, it's best to do the biopsies. We both feel that even if it's not celiac there is some type of malabsorption going on. His GI doc did biopsies on the esophagus, stomach, and the duodenum.

 

I hope that helps.