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My Son And Getting Tested....

lara1704

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lara1704 Newbie
lara1704
Posted

My son has always had issues from the day he was born. His skin always looks terrible and he either is constipated or has diarrhea. He is small for his age but has a "pregnant looking" stomache. He had a blood test and endoscopy (sp? ) done at around 20 months old. It all came back negative for Celiacs. He is now 3yrs old and all of his issues still remain. He is nearly the same size of his younger sister who is not quit 2yrs.

My question is can he have developed Celiacs in the last 15 months? Doctor says no but then was surprised that my husband and I have researched Celiacs and know so much about it. She is refusing giving another blood test. Should we find a new doctor and start back at square one?

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StephanieL Enthusiast
StephanieL
Posted

He could develop it at any time (as anyone can).  If he is on gluten, I would see a GI Dr. and insist at minimum of the blood work. 

 

Good luck!

lara1704 Newbie
lara1704
Posted
  • Author

He does eat gluten. He GI won't do another blood test because he already had the scope and says he can't develope it so quickly. I read that a lot of doctors are up to date with Celiacs research. I don't know what to do. :(

StephanieL Enthusiast
StephanieL
Posted

Get your ped to order the blood work. Be sure it's the full Celiac panel.

greenbeanie Enthusiast
greenbeanie
Posted

Welcome to the board!

 

I'd definitely go to another doctor and insist on another round of blood tests. It's so frustrating it is when doctors just keep saying that nothing's wrong and you know there is! Whether it's celiac or something else, it sounds like your little one needs a doctor who will take these issues seriously. Any doctor can order the blood tests, so if the GI won't do it you can either try to get in to see another GI (which may be very difficult) or find a pediatrician who will order them. 

 

My daughter also had very clear food-related problems pretty much since she was born. She screamed at the top of her lungs for hours and hours in the hospital when she was two days old and my milk came in. A whole shift of nurses and two different doctors examined her trying to find the source of her obvious pain, and they never found the cause. They eventually concluded that she must be having a hard time digesting my breastmilk because she was on antibiotics (due to birth complications) that affected her digestion. They tested her for pyloric stenosis and a bunch of other stuff in her first few months because of projectile vomiting and excessive fussiness and neurological problems, but once those tests came back negative they pretty much dismissed my concerns. We even saw a GI at one point when she was an infant, but they didn't even consider the possibility of celiac because she was so young. It took four years of increasing problems, and switching to three different primary care doctors, before I finally found a doctor who would listen and agree to order the celiac tests. Immediately after her diagnosis and switch to a gluten-free diet, she started thriving and became mostly content and happy for the first time in her life. The transformation was amazing, and almost all of her previous problems have disappeared.

 

If your current doctor doesn't realize that children can have false negatives, or that they can develop celiac after a previous negative test, then the doctor is misinformed. I can see why she might be reluctant to do another scope at this point, but ordering the blood tests is easy and relatively inexpensive. Since you already had tests done previously, you'd have a baseline for comparison, which could be useful. (For instance, if the blood tests were near the low end of the negative range before and are now borderline, that could be a strong reason to investigate further or at least observe further developments carefully in the future.)

 

Good luck!

nvsmom Community Regular
nvsmom
Posted

Even if it is negative for celiac, he could have non-celiac gluten intolerance (NCGI) which has the same symptoms as celiac disease minus the villi damage. After he is tested, you might want to consider trying the gluten-free diet as well as going dairy free (often linked).

 

Good luck.

1desperateladysaved Proficient
1desperateladysaved
Posted

You said the child had an endoscopy.  Since the small intestine is so large in surface area, the damaged part may have been missed.  All this leads to I agree that you may want to check with another doctor.

 

D

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lara1704 Newbie
lara1704
Posted
  • Author

We are going to discuss with his ped about doing a blood test. Then going gluten free to see if it helps him. We will also be consulting a new GI. I'm hoping to find one that knows a lot about Celiacs. They one we have obviously doesn't.

Fourmonkeysjumping Rookie
Fourmonkeysjumping
Posted

Maybe ou could post a city near you to see if anyone here knows of a good GI. We have two - one for my dh and one for my kids and they both specialize in celiac. They are wonderful!

Also, my kids both tested negative the year prior to testing positive.

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