Tested Negative, But Not Convinced

[omgmegg]

My son (will be 3yrs in July) has never had a solid poop. Which wasn't a concern of mine or even on my radar until I began to think about how that would impact his potty training in the near future. I then began thinking about his digestive habbits in general:

 

Never had a solid poop

Poop varies in colors (dark, light, white, black)

Poop varies in consistency (runny with no body, peanut butter like, undigested food sometimes)

Stinks to high heaven, acidic almost

 

He's on target (50-75% range) for weight and height, doesn't have problems sleeping outside of normal realm of almost 3 year olds not wanting to sleep.

He's become even more agitated and defiant. Stoping his feet, yelling, crying- all amplified within the last month or two.

Complains of headaches that don't have a pattern.

He has asthma as well, seasonal (it doesn't cause issues in the Spring/Summer or Fall..Mainly when fall ends and the winter comes and sometimes when the weather is severely cold)

 

Took him into the doctor and did blood work, the two major tests for celiac and he scored a '3'

 

I'm looking for research that indicates other tests that could help determine if it's celiac or another food issue. Can someone still score a '3' and have celiac disease or at least sensitivity? We have a referral to the ped. gi doctor. I'm not even sure what to ask for or ask about.

 

Has anyone else been in this position?

 

Thanks! 

[GottaSki]

Welcome!

 

Can you provide the specific tests run with the lab's ranges -- different labs have different ranges and not all doctors run complete celiac antibody panels.

 

Non-Celiac Gluten Sensitivity has no blood test -- only eliminating all sources of gluten for at least three months to monitor symptoms can diagnose NCGS.

 

Not all children test positive on celiac antibody tests...the DGP (Deamidated Gliadin Peptide) test for IgA and IgG are often the first to be positive.

 

Hopefully the Peds GI you are referred to has experience with Celiac and NCGS and will make sure all the proper antibody and nutrient testing is completed and will help you decide if endoscopy with biopsy is the next best step for your child.

 

Given his symptoms if you opt to not have an endoscopy -- I strongly suggest a 3-6 month gluten-free trial.

 

Hang in there

[nvsmom]

Ditto everything Lisa said. If you can get more tests, then great, but try the gluten-free diet if they are negative or he is denied the tests.

 

I have celiac disease and two of my three kids appeared to have symptoms but they tested negative on the only test available to us (tTG IgA). I know that test isn't foolproof (a sensitivity of 75-95%) so I removed gluten from their diet and they are doing better. I don't know if it's NCGI or celiac disease, but with celiac disease in the family I suspect celiac disease.

 

Naturopaths can give food sensitivity tests (IgG based) but these are not medically accepted. In spite of this, I know many people who have cut foods that were flagged as a problem out of their life and they feel much better for it. It could be worth considering.

 

Best wishes.

[omgmegg]

Thanks for your suggestions. My husband and I are feeling very overwhelmed by this. We just "know", as parents often do, that it's a food issue. It's going to be extremely challenging to change the diets of 4 people (myself, husband, son, older daughter)- the only silver lining is that he'll feel better and our 4 month old will never have to make the transition.

 

Any links on transitioning into a gluten-free lifestyle would be extremely helpful.

[GottaSki]

Here is a great place to start:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

It is important that you not remove gluten or even go gluten light with your son until testing is complete including an endoscopy if that is the path you choose.  Once gluten is removed the body stops producing the antibodies which are measured in the celiac blood work.

 

Additionally, if anyone else in the family is going to remove gluten you may want to consider getting a celiac antibody panel before doing so as Celiac Disease is genetic - although most people with the genes never develop Celiac.  Here is a list of the symptoms associated with Celiac Disease:

 

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