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Severe Stomach Pain
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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.

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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.

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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.

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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!
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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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