Questions To Ask The Gi Doc, Especially About Possibility Of It Not Being Celiac?

[user853]

My 6 year old daughter had a "we think the random once-every-few-months-hives are from food allergies but let's test this first" celiac panel that came back "overwhelmingly positive". 

 

Her appointment with the GI doctor is tomorrow.

 

Background - I was diagnosed with celiac last year when they were throwing a bunch of tests at me to diagnose a weird symptom (that, it turns out, is not celiac because after over a year being gluten free it hasn't resolved, but that is another issue).  So, neither me or my daughter have any symptoms of celiac.  NO SYMPTOMS AT ALL.  

 

I don't have a copy of her test results yet.  I also don't have the results of my original tests (even after numerous attempts to get them).  But, I did have a positive result from an endoscopy. 

 

Because I am an adult and have food control issues anyway, I took my diagnoses and didn't ask a lot of questions. 

 

But now I want to know!  I want to know why neither of us have any symptoms!  And, more importantly, I want to know if this could possibly be misdignosed and be something else.  Part of my questions are because I don't want my daughter to have to deal with the gluten free stuff, I admit that. But the other part is that due to some really bad genetics, my kid is succeptible to a host of crappy diseases in the future.  If it at all possible that this is NOT celiac I want to know what it IS.  I don't her to spend her life not eating gluten only to find out that whatever is causing these tests to be positive is something else that we could have treated and saved her from future disease.  Does this make sense? 

 

Anyway, I am just wondering if there is a resource or list of questions to ask the doctor.  Or if anyone has any other thoughts or ideas on what to ask?

 

Thanks! 

[shadowicewolf]

Celaic has a large range of symptoms (last number i saw was about 200 or so). Issues that one may not think are related can certainly be related.

 

Many do not have symptoms that are 'typical' (stomach issues and the like).

[StephanieL]

It's genetic. If you have it (based on blood AND biopsy) and your kid tests positive on the blood work, most Dr's will say that's enough for a diagnosis.  Why don't you have symptoms?  Luck? Other issues masking it? No one knows. What you do know is that you need to be gluten-free for life. 

 

My DS was tested because he had a Vit. D level of 0 (zero, literally nothing).  He had no other symptoms (though looking back, perhaps he did but we attributed them to other things). So with younger kids it's often a case of them not having enough damage to cause issues even though there is damage going on.

[mamafish]

You're biopsy-confirmed celiac and she's got overwhelmingly positive antibodies?  I'd take that as pretty conclusive.

 

The good news is, if you can get this autoimmune disease quieted, maybe she *won't* get some of those nasty things she carries genes for (we have that problem in my family too).  Gluten-free isn't easy, but I'd way prefer it to a lot of other things my kids could get.

 

From what I'm reading, 60%+ of people being diagnosed with celiac now have no GI symptoms, and up to half of those don't report *any* symptoms (although apparently some of them feel better going gluten-free anyhow).   We're in that camp if we test positive (we're testing because of relatives with celiac).  And yet I did bloodwork and apparently I have screamingly low ferritin and the doc is shocked I'm not anemic and brain fogged and unable to function.  I "feel" fine (or as fine as the parent of a special needs kiddo feels.  I thought.  So things can be quite wrong before they feel bad.)

[bartfull]

None of my business, but some of those crappy diseases you fear may be brought on by untreated celiac. Did you know that certain cancers, thyroid problems, lupus, diabetes, and a host of other autoimmune diseases are much more likely to hit an untreated celiac? If things like that run in your family, it might just be that undiagnosed celiac was the underlying cause.

[nvsmom]

Ditto Bartfull. Continuing to eat gluten will keep your level of inflammation extremely high and that can help tip your body into another AI disease. In hindsight, I've had untreated celiac disease since babyhood, and it makes me wonder if my other AI disorders might not have developed if I'd lived a gluten-free life.... Eating gluten-free as a celiac is actually a preventative measure when it comes to other AI diseases.

 

I've been gluten-free for over a year and not all of my symptoms resolved either, some I doubt will every completely heal. I still have pain, migraines, hair loss, fatigue, bathroom issues... but it is for the most part improved over what it was jut 8 months ago. You and your child are having symptoms (hives is a symptom although usually not a severe one). Now you just need to consider that they could very well be celiac disease linked. You never know, your daughter may experience some great gains once gluten-free like a growth spurt, stronger bones, better sleep, thicker hair... they might be small improvements but they'll probably be there.

 

Have her go gluten-free for a good six months and if there is no improvement of symptoms (even though she has few) then go back to the doctor to look for other causes on top of the celiac disease. Just keep her gluten-free because as you know, celiac disease is for life.

 

As for yourself, stay gluten-free, and best wishes finding more answers. I know it's frustrating when you are fairly certain things are being over looked.

[mshanson3121]

I agree with others. If the blood test and biopsy are positive - then, you do have celiac, whether you think you do or not. All symptoms may not resolve, or they could be caused by something else. Many people who are sensitive to gluten are also sensitive to dairy.

[user853]

Late response here, but thanks everyone for you thoughts! Endoscopy was today and it sounds like the pathology report is only a formality at this point. Poor kid.

But, I appreciate the comments above that maybe all this crap I have and my family has is due to lifelong celiac crap. I definitely happy that my kid may escape some of this. Ugh.