3 replies to this topic

[ForTrent9]

My 9 year old son has been having recurring stomach pain for 2-3 months. We have an appt with a GI specialist in one week. this weekend we ended up in the Emergency room, he was pale, severe stomach pain, dehydrated. Dehydrated because everything he eats and drinks was hurting his stomach.
Blood test revealed elevated glucose and xray showed lots of gas, no impaction. He has bouts of constipation then loose bowel movements to the point of pain.
His symptoms seem aggravated by breads, bagels, cookies and sweets! But just about anything upsets is tummy now.
Help!!
Does this sound like a celiac or GI? Dr. wants us to avoid gluten for a week? NO test done yet, besides blood work in ER, which was not specific for celiac.

[dilettantesteph]

I had severe stomach pain before diagnosis. It wasn't enough for the emergency room, but it would make me double over. The problem with cutting out gluten before testing is that it could give you false negative results. Your son might have to be sick to test positive. I hope that you get through it quickly. Your poor son. If it is bad enough you could quit the gluten anyway and not worry about the official diagnosis, or hope that the testing would be positive anyways. That can lead to problems later though. For instance, my daughter's college requires a doctors note to provide a gluten free diet in residences.

[nvsmom]

As a child, I remember being curled up in a ball on the couch after many meals because of the pain... and nothing helped it go away, I would just lay there for 30 minutes or more until it finally faded. As an adult, I learned to suck it up, but I wouldn't wish it on any little body. What you describe was definitely one of my symptoms, including the "C".

Avoiding gluten for a week will tell you very very little. The doctor should order tests, and schedule an endoscopic biopsy (if you want to go that route), and once his testing is complete then he should go gluten-free for at least 3 months. One week is barely enough time to notice a change; he could start noticing less stomach pain, but many people (like myself) end up feeling worse, headachey, tired and cranky in those early days... There is a chance the change won't be positive at first if he has any sort of withdrawl.

Besides, blood work will come up as a negative, regardless of his celiac status, if he is not consuming gluten at the time of testing. This is especially true if he is new to the disease and his autoantibody levels are not high yet; in fact being in the early stages of the disease could cause a false negative blood test even if he is eating gluten.

I would get the blood work done as soon as possible; your family doctor can order it. The most common blood tests are:
ttg IgA and ttg IgG
EMA IgA
DGP IgA and DGP IgG
total serum IgA (to see if he has adequate levels of IgA for the tests to be relevant

If those tests are negative, try the gluten-free diet anyway. GI is MUCH more common than celiac and can cause the same awful symptoms, just without the organ damage. As you know, GI is not something to be taken lightly.

Celiacs are often low in nutrients so you might see if you can have his D, B12, iron, Ca, and potassium levels too.

Good luck to you. I hope he feels well soon.

[ForTrent9]

As a child, I remember being curled up in a ball on the couch after many meals because of the pain... and nothing helped it go away, I would just lay there for 30 minutes or more until it finally faded.  As an adult, I learned to suck it up, but I wouldn't wish it on any little body.     What you describe was definitely one of my symptoms, including the "C".

Avoiding gluten for a week will tell you very very little.  The doctor should order tests, and schedule an endoscopic biopsy (if you want to go that route), and once his testing is complete then he should go gluten-free for at least 3 months. One week is barely enough time to notice a change; he could start noticing less stomach pain, but many people (like myself) end up feeling worse, headachey, tired and cranky in those early days... There is a chance the change won't be positive at first if he has any sort of withdrawl.

Besides, blood work will come up as a negative, regardless of his celiac status, if he is not consuming gluten at the time of testing.  This is especially true if he is new to the disease and his autoantibody levels are not high yet; in fact being in the early stages of the disease could cause a false negative blood test even if he is eating gluten.

I would get the blood work done as soon as possible; your family doctor can order it.  The most common blood tests are:
ttg IgA and ttg IgG
EMA IgA
DGP IgA and DGP IgG
total serum IgA (to see if he has adequate levels of IgA for the tests to be relevant

If those tests are negative, try the gluten-free diet anyway. GI is MUCH more common than celiac and can cause the same awful symptoms, just without the organ damage. As you know, GI is not something to be taken lightly.

Celiacs are often low in nutrients so you might see if you can have his D, B12, iron, Ca, and potassium levels too.

Good luck to you. I hope he feels well soon.

Thank you so much, that helps...we are heading to our primary Dr. tomorrow, and I will bring this list of blood work that I would like tested!