Frustrated And Confused Mom

[svensmama]

I tend to be wordy so I'll keep this as short as I can.

My son is 2 years and 4 months old. Failure to thrive was near, with weight loss and physical wasting away around his 2nd birthday (gone from a consistent 85th% to 5-10th%). Has all classic symptoms of celiac including: DH, diarrhea, irritability, personality changes, lethargy, insomnia, eczema, lactose intolerance (after an ability to handle milk up to 2 years old), extreme bloating especially at night, and ultimately: the refusal to eat, EVER. Has had 14 ear infections, is on 2nd set of tubes, adenoids are out, sick all the time.

Bloodwork indicated only: elevated liver enzymes, high platelet count, blood sugar a little high. Celiac blood panel reported to be negative (I have not seen it, I don't even know what the panel they did was).

Doctor suggested we try the gluten-free diet for 2 weeks to see if he was celiac, despite the bloodwork. I didn't want to do it (I thought it was too hard and expensive; I also have a 15 month old). His teachers at daycare were extremely concerned, especially a teacher that had a child with celiac disease and was recognizing the symptoms, and a different teacher whose daughter has celiac. So I finally decided to try it.

OH. MY. GOD. He's a different child. Huge difference. We've been VERY careful about cross-contamination. He's gained 2.5 pounds and grown 2 inches. In 7 weeks, I'm not even exaggerating. He's back up to 50th% on the charts, he's sleeping, he's eating and asking for seconds, his skin has completely cleared up the eczema, and the DH is clearing slowly, he's starting to tolerate dairy, no more bloating, 4x the energy at least. He sometimes has a formed poop! Wow!

Last week we saw the gastro. She told me that because the celiac panel came back negative, there's almost no chance he has celiac (from what I read online, this statement is a bunch of cockamamie). Then she told me we could do the genetic testing, then if it's positive, do the biopsy (with a gluten challenge). Gastro office just called me and said the genetic testing came back negative. Reiterated that my son DOES NOT HAVE CELIAC and NEVER WILL. Two weeks ago at daycare he ate one goldfish cracker and was sick with diarrhea and night-wakings and bad rash for a week.

What does this all mean?? I feel crazy right now. I really do. Thanks for the help and support.

[debmom]

Find a new doctor. The one you have appears to be arrogant and an idiot.

[swalker]

I agree, you need a new Doctor.

Celiac disease is one manifestation of gluten intolerance.

My symptoms are depression and memory loss, my daughters thyroid gets sluggish, her hair falls out and she gets depressed, her son has seizures and my Dad has arthritis. They are all symptoms of gluten intolerance and none of us has a positive blood test for celiac, we didn't bother with further testing because we do so well gluten free we never saw the need.

[lizajane]

your child is gluten intolerant, celiac or not. my blood work was negative. my biopsy was positive. and i stopped throwing up IMMEDIATELY upon going gluten free.

my 4 year old tested negative as in infant. however, 3 days after going gluten free he started sleeping all night for the first time in his LIFE and has become the sweetest, most pleasant child EVER. he was so sweet and calm as a baby and then when he hit about age 2, he just turned into a totally different child. while he is in the 50th%ile, he is SIX INCHES shorter than his brother was at this age (4.5) 6 inches!!! that is 1/2 a foot!!

i do not need a positive anything to tell me that dylan is gluten intolerant. when he is older, he can decide for himself if he wants a biopsy after a gluten challenge. but i am not going to subject him to it when i KNOW he is a different person without gluten.

[Lisa]

Please follow your instincts. Keep your child on the gluten free diet and watch him thrive. At some point, when he is older, you can do the gene testing of you wish. But, the Serology Panel for Celiac is highly unreliable for children under the age of five.

The diet does not have to be expensive and we have plenty of people to show you the ropes. This is a great place. Take a walk around and welcome.

And, by all means, find a new doctor

[svensmama]

Thank you so much for your responses!!

I hadn't thought of letting my son decide about a biopsy until he is older, and I think this is such a great idea. I was really hung up on the need to have a diagnosis and even though I could pursue that more, I feel like maybe there's no need at the moment. He IS thriving now, I DO know he can't have gluten, so what else do I need?

We are in the process of moving from Syracuse, NY to Louisville, KY. I look forward to the opportunity to have a wider selection of doctors/pediatricians and gastroenterologists to choose from when we get there. Until then, the kids are home with Dad and we can carefully control his diet so he continues on the path to wellness.

Thanks again - this is a great forum and I will continue to post.

Marian