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Questions About Blood And Endoscope Testing On My 4-Year-Old


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#1 tiffanyk

 
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Posted 29 June 2013 - 09:07 PM

My almost 4 year old has chronic constipation since birth so I finally got our pediatrician to try to figure out what's wrong. She had some blood work come back in January with a positive ttg (77.8). The rest of the labs were normal. She had labs done again in May with another positive ttg (50). We finally got an appointment with a pediatric GI, who was horrible, last Tuesday. She just had a endoscope biopsy on Friday. The drs said that "everything looked normal."
We live in a very small community in western Canada. We actually had to travel 4.5 hours to Vancouver to see the pediatric GI and to have the biopsy, therefore information, education and medical professionals knowledge is extremely lacking.
I would like to know if my doctors blood work is a confirmed Celiac, or what those numbers actually mean. No one seems to be able to tell me. I want to start a gluten-free diet but I don't know if I should wait for the biopsy results (could be up to 4 weeks) or can I start now?
Can someone point this confused mommy in the right direction?
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#2 shadowicewolf

 
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Posted 29 June 2013 - 11:52 PM

My almost 4 year old has chronic constipation since birth so I finally got our pediatrician to try to figure out what's wrong. She had some blood work come back in January with a positive ttg (77.8). The rest of the labs were normal. She had labs done again in May with another positive ttg (50). We finally got an appointment with a pediatric GI, who was horrible, last Tuesday. She just had a endoscope biopsy on Friday. The drs said that "everything looked normal."
We live in a very small community in western Canada. We actually had to travel 4.5 hours to Vancouver to see the pediatric GI and to have the biopsy, therefore information, education and medical professionals knowledge is extremely lacking.
I would like to know if my doctors blood work is a confirmed Celiac, or what those numbers actually mean. No one seems to be able to tell me. I want to start a gluten-free diet but I don't know if I should wait for the biopsy results (could be up to 4 weeks) or can I start now?
Can someone point this confused mommy in the right direction?

The leading researcher for celiac uses this following criteria in testing:

 

Positive blood test

Positive biopsy

Positive genetic test

Symptoms of celiac

Symptoms go away on the gluten free diet

 

Four of the five are enough for a positive diagnosis according to him (i'm sure another member knows of the doctor i'm talking about, I cannot remember his name at the moment).

 

As of right now, feel free to do the diet.


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#3 justa

 
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Posted 30 June 2013 - 04:57 AM

I got my 2 year old's endoscope Wednesday and everything "looked fine"

Biopsy results showed different. So you never know. I know it takes longer there in Canada but we had full biopsy results Friday afternoon.
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#4 nvsmom

 
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Posted 30 June 2013 - 06:37 AM

Do you happen to know the normal reference ranges for those labs? Are they 0-20 like out here in Alberta? If so, his tests are rather high and that makes it less likely it is caused by something else. A positive tTG IgA can also be caused by diabetes, chronic liver disease, thyroiditis, and I believe Crohn's and colitis, but the tests are usually not much above normal when caused by something else. 91-99% of the time, a positive tTG IgA is caused by celiac disease.

This report has more info on the tests: http://www.worldgast..._long_FINAL.pdf

From what I have seen, most celiacs do not have damage visible to the naked eye. Most damage is found in biopsy,but there is a chance the damage could be missed if it is patchy.

Unless you are thinking of requesting more lab tests, which I don't think is necessary because you have a positive tTG already, she is done with celiac testing so she could move ahead with the gluten-free diet. If your entire house is going gluten-free, you should have the rest of the family tested first because it is a genetic disease.

You could also request nutrient testing for your daughter. Celiacs are often low in B12, D, calcium, ferritin, iron, potassium, and zinc. She can be gluten-free for those.

Dairy is sometimes an issue for celiacs for the first few months. If you don't notice a lot of improvement on the gluten-free diet, you might want to remove dairy from her diet for six months or so.

Best wishes. I hope she feels great soon.
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#5 powerofpositivethinking

 
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Posted 30 June 2013 - 07:11 AM

here's the link Shadowicewolf was referring to:

 

http://www.ncbi.nlm....les/PMC3292448/

 

pg. 9 and 10 is where they talk about the diagnostic criteria with the 4/5 rule.

 

it's authored by Alessio Fasano who is considered the top celiac go to doctor and Peter Green who's also top notch.  Hope this helps!

 

 

The leading researcher for celiac uses this following criteria in testing:

 

Positive blood test

Positive biopsy

Positive genetic test

Symptoms of celiac

Symptoms go away on the gluten free diet

 

Four of the five are enough for a positive diagnosis according to him (i'm sure another member knows of the doctor i'm talking about, I cannot remember his name at the moment).

 

As of right now, feel free to do the diet.


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#6 greenbeanie

 
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Posted 30 June 2013 - 04:38 PM

My daughter's endoscopy also looked normal during the procedure, but biopsies confirmed celiac. Her tTG-IgA was 65 the week before (and DGP tests were positive too). Our pediatric GI does not give Marsh scale ratings for young children, but he said that her intestinal damage was clear in the biopsies but not as widespread as he'd expect given her blood test numbers. We went gluten-free immediately after the tests were done and had already seen very significant improvements by the time we got the biopsy results five days later. Good luck!
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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.





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