ChristinaPro

I am so conflicted on what to do for my 19 month old daughter.  I am so mad at myself for not being better informed when this all started.  Long story short: my daughter had a diaper rash for 2 months that we could not get to go away no matterwhat we did,  then her poop went crazy, it was wheat grass green, smelled like dead fish and she would poop up to ten times a day.  I had a gut feeling that wheat was causing her symptoms and her doctor said wheat allergy (never in a million years did I suspect celiac) was very common and told us to go gluten free and see how that worked.  It was amzazing how everything cleared up!!!!  A month and a half later they did blood work.  I had to plead for them to even do it   They swore that it didn't matter if she were eating wheat or not.  They were assuming it was the same as allergy testing.  Anyhow, it came back borderline postive by 3 points (I don't even know what that means) but since then they LOST they results and the lab cant find them either.  The specialist won't even talk to us unless we do a month of gluten to retest.   The smallest amount makes her sick  Poops all day the following day and the rash comes back.   she is miserable!  We have also had to go dairy free but haven't done any testing.  She had ear infections for 2 months, lost 10% of her body weight in 2 weeks and ended up in the hospital. 

 

I can't decide if I should retest or not..   Is there something else that would cause a false positve test?  I am trying to find a new doctor but live in a very rural area and chioces are limited and when we did go to the city, the doctor treated me like I was crazy. 

 

Has anyone done genetic testing?   I realize that when she goes to school it will be helpful to have proper diagnosis   I have no doubt she is intolerant to gluten and most likely dairy.    Is it worth making her sick for a month?

Symptoms started in June. My daughter had a diaper rash for two months, we tried everything to make it go away and then for 10 days things got crazy with pooh. At the end of ten days it was wheatgrass green and smelled of dead fish. Her doctors office told me I wasn't changing her diapers enough and then that she probably just had an intestinal infection and to feed her toast. Anyhow, long story short, my daughter and I went gluten free (gut instinct that wheat was the issue for her and I was still nursing). her rash disappeared and everything else returned to normal. I was amazed at how fast things cleared up and how much more happy she was as well!

After 2 months of being wheat free they did blood work. Wheat allergy came back negative so her Doctor told me that she could eat wheat (did NOT trust this) and got celiac back yesterday (i guess they forgot?) and it was borderline positive. I was told again, that it was probably fine to feed her wheat. I'm changing doctors after yesterdays visit but my question is: How accurate would the blood work be after being gluten free for 2 months when the blood was taken and what does borderline positive mean?

I'm still planning on having a gluten free household but should I follow up on this blood work for better knowledge of whats going on?

The other issue is that we live in a rural area with only one pediatric office and to find another would be almost 2 hours away. Resources are limited