16 Month Old - Failure To Thrive

[klang77]

I'm wondering if anybody else's child has had similar symptoms. My daughter was 7lbs. 13 oz at birth and she is now 16 months and only weighs 18 pounds. She has had wheat sensitivity since birth, but tests show to true allergy. As an infant she has horrible bloody stools caused by my eating wheat while breast feeding (along with projectile vomiting and reflux). I did a gluten free diet for 6 months and gave her Zantac and she thrived well. After stopping she has continually lost weight. Doctors say...she's just going to be small. But as her Mom, I just know she doesn't feel well. She's sickly compared to most her age. She has frequent diarreah, lots of tummy aches, trouble sleeping through the night, late teething, problems with her tooth enamel - it did not form right on her baby teeth, weight loss, dark circles under eyes, she's tired all the time. Celiac blood test results were inconclusive. Her IgA came back low, but that's it. I swear she's lactose intolerant, but the docs all say...not possible. Does this sound familiar to anybody?

I have just started Gluten free again...in my heart, I know I'm right about this. We have a family history of colitis, IBS, colin cancer, and more. I have been diagnosed with reflux (on acid reflux meds for years now), IBS, had trouble with mysterious lower right and upper right quadrant stomach pain for the last 10 yrs, I carry the lupus anticoagulent gene off and on, I often feel fatigued and tired...but it never dawned on me there could be a reason until this wonderful little person came into my life and I have seen her suffering. Any help and suggestions you can give would be much appreciated.

Thanks!

Karrie - looking for Celiac help in Maryland!!!!

[hjkmatthews]

Hello,

I just wanted to let you know that I hope you get things figured out. Almost everything you said about your daughter is a vivid memory for me with my daughter. The tummy aches, diarreah, late teething, trouble sleeping at night, etc. I don't know what to say about her tests being inconclusive except that you are her mother, and a mother's intuition is usually right whether doctors tell you otherwise. My daughter was 22 months and only 17 lbs!!! I knew from about 9 months that something wasn't right, but doctor after doctor kept telling me she was just getting stomach viruses all of the time, and that her ear infections and asthma just weren't under control yet. I knew better though, and thankfully she was finally diagnosed this past February. If your daughter was thriving and putting on weight being gluten-free, keep her gluten-free even if she hasn't tested positive. Her improvement is all the proof you need right? Best of luck to you both, hope yall start feeling better.

[hapi2bgf]

It sounds like you need to find some new doctors. Your gut is telling you something is wrong, and it sounds like something is wrong, go try new doctors until someone works with you. It took me many years of fighting with different doctors to find one who would not label me as IBS, this guy did tons of tests to prove every theory he had about my health. He won my trust.

If you think you child may have celiacs, look up the top childrens hospital in your area. Make an appointment with the best doctors there preferably a Pediatric Gastrointerologist if you can. Attending local celiac meetings may help you find the name of a highly recommended doctor. I go with ALL tests from previous doctors, dates and symptoms of episodes and illnesses, food diary and reaction log. The more info you bring with you, the more they can learn about the problem is my theory.

Good luck finding the source of the problem. My thoughts and prayers are with you!

[klang77]

Thank you for your posts, just knowing that there are others out there who have been through the same thing has helped enormously already. Of those of you who have children who were positively diagnosed, was this done through blood tests and then followed up by the colonoscopy and endoscopy? What kind of doctor made the diagnosis (pediatrician or gastro?)

Thanks so much for your help!

[TrixieMom]

My son was diagnosed at 14 months with negative blood tests at 6 months and a positive endoscoy at 13 months. He had classic symptoms of celiac - chronic diarrhea, irritability, anemia, reflux, etc.

Trixie

[ryebaby0]

My son's ped ordered the celiac screens (on advice from his rheumy, but the ped had the celiac dx on the short list already) of a tTg, IgG and IgA. Two of the three were sky-high. It was confirmed by a endoscopy and later by a second endo/colonoscopy (long story).