Need Your Opinion Please...what Would You Do?

[divamomma]

My 4 1/2 yr old daughter tested positive for celiac disease (ATTG IgA was 42. Her symptoms are irritable/cranky behavior, exhaustion/lethargic (worsening) constipation, constant need to eat/hunger and itchy skin (worsening)

We can not get in to see the specialist for the scope/biopsy until the end of February (two months from now). I see my daughter getting worse and I don't really want to wait that long for the biopsy.

My concerns are:

#1 why wait, so they can just say YES she has celiac. Gee...thanks for making us wait to tell us what we already knew.

#2 The biopsy may not reveal anything due to patchiness ot early stages/no visible damage yet based on the positive blood we would likely go gluten free anyhow....right?? This is what I think I would do.

#3 The blood test is positive, we can not discount that so why bother with additional testing?

#4 It is VERY hard to wait seeing my daughter feeling poorly and getting worse. I feel helpless and frustrated.

Thank you for reading this far. Would you wait two months for the biopsy or would you cancel and go gluten free ASAP?? Any advice would be much appreciated.

[ravenwoodglass]

If it was my child I would simply go with the diet. The choice really is yours. With positive blood tests and a good response to the diet your doctor should be able to diagnose her so precautions can be take when she is in school.

[Jestgar]

Contact your pediatrician, assuming she's the one that did the tests, tell her you can't continue to keep giving your daughter gluten and confirm (don't ask) that she'll be willing to provide documentation for school, should the need arise.

[Wolicki]

My son tested positive, and I have celiac, that was enough for us. Since he was 9 at the time, I gave him the choice to biopsy or go gluten free. He chose gluten free. If he were too young to make the choice, I would have made him gluten-free. I felt no need to put him through an invasive procedure when his blood test was positive.

[txplowgirl]

She is feeling really bad and she has positive tests. I would take her gluten free immediately. After 6 months if she is not feeling any better then I would have a biopsy done to check to see if there may be other problems. Just my opinion.

[divamomma]

Again, thanks for the replies. Is there anything a specialist would do aside from the scope/biopsy that I should be looking to my family dr for? I am certain my own family dr will refer us to a diectician. Again with positive blood tests I don't see a need to see the specialist.

[mushroom]

The one thing you probably should have your doctor check is her blood nutrient levels for vitamins and minerals; since this is a disease of malabsorption, she could be deficient in a number of important nutrients. The commonest are Vits. D, B12, iron, potassium, magnesium, zinc

[srall]

I had a doctor's appointment for my daughter scheduled for November 29th and I remember very well in the middle of October looking at my daughter falling apart and wasting away and saying, "This ends TODAY. You don't have to feel this way one more day." I moved her to a gluten/dairy/corn free diet that night. Then when I did get her to the doctor she tested normal for everything. It's maddening. Why don't doctors go by dietary response? And you have a positive blood test? What in the hell is the point?

[srall]

I should say that my pediatrician was very supportive to my daughter's dietary response, and that was good enough for him to at least call her gluten intolerant. I asked about getting in with a dietician and his response was that the dietician is going to tell you what your child should be eating...which you probably already know. But the trick is getting your child to eat that way. My mom is actually a dietician so I'm certainly not trying to take work away from someone, but I think the pediatrician knew that I knew what my daughter needed to eat.

She was 7 1/2 when I changed her diet and so sick and absolutely miserable that she jumped right on board with a pretty healthy diet, including salads and green drinks. If you'd told me one week prior to going gluten free that my daughter would have eaten a vegetable you could have knocked me over with a feather. I think their tastes change very very quickly once they are eating the right foods. Good luck! I hope you decide to take her off and not wait for the biopsy. Her symptoms sound so much like my daughters.