So Now What?

[mommy2krj]

Right now I don't know if I should be relieved or aggravated or frustrated or what. I got the results of little man's endoscopy today, from the nurse. I'm going to double check tomorrow that my appointment for Friday is still available, as they like to cancel my appointments without telling me. :/

 

Anyway...the nurse said the endoscopy was negative for Celiac. That doc saw signs of gastritis which can be caused from reflux. Continue eating normal and continue with the miralax oh and here's some more omeprazole (which did NOTHING for him before)....and she'll see you in two or three months to see how that is going. I swear if they cancelled my appointment for this Friday, heads are going to roll. I didn't think about that until a little bit ago. *sigh*

So....what causes the blood test to come back positive and not the biopsies? I know they use the biopsy to confirm....but if it isn't then wth caused the blood test to act like that?

Grumble, grumble, grumble. I just don't get it. And I don't trust doctors further than I can throw them, which drives my husband nuts. They simply haven't proven, with myself and my immediate family, that they know more than me, yet. I've diagnosed my husband with most of the ailments he's had over the years and only my nagging due to that has gotten him to go to the doctor...who, subsequently, proves me right. Sleep apnea, pneumonia....common sense things, broken bones. He's learned, very slowly, that I'm not the mom that panics at the first sign of something wrong with one of my kiddos....and if I am, we should get them to the hospital, now. Ahhhh....this is going to drive me nuts. I need to make a list of all my questions and make sure they get answered. Going to go post some more questions over on the slightly busier threads.....



*******Oh....and not to say doctors aren't smart. Just that, I know my kids far, far better than they do but my husband still takes the doctor's word as law, every time.....and they simply aren't always right....or even fully educated about nutrition (which he totally doesn't believe me on that one!) and given that they spend about 5 minutes per visit with my kids...they don't know them very well at all and things like that. I use my doctors/pediatricians as more of a....sounding board.....really. I know there are certain areas they definitely have more knowledge of and those are the areas I use them for. Like the ability to put tubes in a child's ears to help with ear infections and the like. Or heart issues...that can't be controlled by diet.

[tommysmommy]

Follow your gut momma. Important question is...if blood test is positive, did you "catch it" before villi damage took place. I so wish I could have faith in doctors but my child's missed celiac diagnosis left me with little hope. You have positive blood work, try the gluten-free diet & document the changes/Improvements and bring that to your next appointment - if changes are dramatic, it may be enough for some doctors to give a diagnosis w/out confirmed biopsy (and if not, atleast you'll know.

[nvsmom]

The tTG, DGP, and EMA tests indicate that damage is being done to the intestines - it's what they do. If she was positive in the Iga version of those tests, then it is really really likely that the damage is in the intestines, and not elsewhere, because IgA is from the areas in the body with mucosal linings. ei. the intestines.

 

Damage can be spotty though so it is possible that the docyor missed it. The surface area of the small intestine is that of a tennis court - that's a lot of area! Also, kids tend to heal faster than adults. She might have a healthy "repair system" that is almost keeping up to the damage.

 

Make her gluten-free. It could help with her reflux and other symptoms too. A positive blood test most likely means celiac disease, unless she has diabetes, thyroiditis or chronic liver disease. If she keeps eating gluten, I would be willing to bet that damage would show up eventually, once it was bad enough.

 

I hope she feels much better on the gluten-free diet.  Best wishes.