8 replies to this topic

[ChristinaPro]

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

Edited by ChristinaPro, 04 January 2013 - 09:17 AM.

[StephanieL]

If she's borderline positive AFTER 2 months gluten free, I would suspect her to be FULLY positive if you were't gluten-free at the time of the test. I would not get any more testing, you have enough. A positive is a positive especially if there was major improvement with changing her/your diet!

I would be sure your next Dr. is willing to write a formal dx based on the past blood work and the improvement when gluten was removed from her diet. This will make it possible to get a 504 plan or other accommodations when they may be needed in school in years to come!

Great job on finding it so early! Many kids suffer for years before they are dx. You rock Mom!!! Keep up the great work!

[tarnalberry]

Absolutely - if she got a positive after being gluten free for so long, I wouldn't want to know what her scores were before that. New doc is DEFINITELY in order, as your current one, AGAINST TEST RESULTS, is telling you to make her sick.

[Ollie's Mom]

I agree with pp's. Positive after 2 months gluten-free plus resolution of symptoms on gluten-free diet would be enough for me.

If you need a diagnosis, perhaps you could see about getting a referral to a celiac specialist, even if it is a few hour drive away, so that you get that official celiac diagnosis. Then you can march in toa doc office closer to you for more regular care wwith a diagnosis in-hand.

Good luck, and you must have awesome mommy instincts!! :-)

[Cara in Boston]

Everyone is giving you good advice and you are right to follow your instincts. A positive is a positive . . . the ranges are there for a reason and if she is out of range, the test is positive. The fact that she was already gluten free for two months makes it much less "borderline" - her numbers must have been very high to still be getting a positive test. Your doctor clearly does not know enough about gluten intolerance and celiac disease.

Please try and find a doctor who will diagnose her based on her blood test and improvement on the diet. She has years and years of school, summer camp, college dorms, etc. that she will need help navigating safely. Some schools won't comply without a doctor's diagnosis.

Cara

[ChristinaPro]

Thanks everyone! It's been so frustrating dealing with her doctor. I mean, who wants to argue that your child has celiac but that's what I like right now. Instead of support and advice, I feel like they think I'm nuts.
Anyhow, thanks for te responses!

[1desperateladysaved]

I am so glad you found out so early for your daughter. Now you can really make a difference for her life! I hope you both continue to see improvements.

Diana

[ChristinaPro]

Oh my! We are at children's hospital because my daughter has RSV that turned into pneumonia They have not listened about her celiac at all whicj i Have brought crackers and such to the room. Anyhow, I have been told by three doctors that she doesn't har celiac because her wheat allergy blood work came back negative Sorry just had to vent. I don't know where to go for answers sometimes..... They look at me like I'm crazy to even bring it up

[mushroom]

I would look at them like they are crazy and say, "What does wheat allergy have to do with celiac disease?" They are two independent things. If they don't know that then you can't trust what they say.