One Child's Story: A Year In Review

[mimommy]

February, 2008: My 8 yr. old daughter attended a b-day party and developed flu-like symptoms.

2wks. later: Still vomiting, cramping, diarrea, not eating, no fever. Took her to ped. (saw the partner). Diagnosis--Gastroenteritis

10-14 days later: Still vomiting and having severe stomach pain, suffering through the night and sitting on commode for hours crying. No fever, no diarrea. Took her back to ped. (saw her actual doctor.) Ped. began testing for various infections and illnesses, including diabetes, celiac, 7 common food allergies (including wheat), various labs, etc. As she did at every check-up, ped. pointed out that my daughter was overweight for her age (said this in front my child.) My response was that she eats healthy and is active, and that being overweight was not causing this illness. Ped. suspected Celiac but said that most patients present with weight loss and failure to thrive (clearly not my my child's symptoms.)

5 days later: My daughter is still vomiting (although able to eat small, mild meals) and is now suffering debilitating stomach pain. Vomiting so badly we take her to the emergency room. She is diagnosed with lactose intolerance, yelled at by a plebotimist for unintentionally jerking at the sight of a needle, and given what was called a "GI Cocktail"--a mixture containing maalox and lidocaine.

Next morning: Back to ped. at 9:00 am. Daughter vomiting in car and in ped.s office. Ped. appalled that cocktail was given, finally taking this seriously. Prior tests all come back negative (including celiac panel and wheat allergy), with the exception of highly elevated liver enzymes. Ped. orders full ultra sound of all digestive organs and more blood work.

Within days, my daughter was actually feeling well enough to eat and go to school. Later that week and the week after, the labs and ultrasound were done (including a rescreening of the celiac panel.) At some point in this time frame my daughter began sleep walking and complaining of ankle pain. Nearly every night for this entire time she would seem fine until about an hour or two before bed (an hour or two after dinner). Then the pain would start, the panic, distress and eventual vomiting. I would stay up most of the night with her. I had started feeding her more fiber, as it always seemed to allay abdominal distress in the past, making for easier BM. (I now see this was only having a placebo affect.) Discussions with ped. about celiac, family history of severe food allergies, and weight throughout.

7-10 days later: Back to ped. for lab results. Daughter feeling much better, but still having stomach pain and difficult BM. Second celiac panel is positve for celiac, liver enzymes still high but slowly going down. Ped. refers to Pediatric GI Specialist.

2 days later: Actually got an appointment right away with GI. Told that celiac was LATENT, and not the cause of illness. Told that she was overweight (again in front of her) and that she had Acid Reflux Disease. Given scrip. for prilosec (in pill form, which she was unable to swallow.) Biopsy (scope) was ordered.

Early April: Scope performed, initial result showed no visible damage to villi. We were told (in the hospital waiting room) that our daughter had signs of acid reflux (couldn't be from all that vomiting, could it?) and that she was OVERWEIGHT! At this point I could no longer contain myself and literally "went off" on the doctor. Biopsy results come back negative for celiac, GI puts her on prilosec (I was able to crush it and spoon feed it to her in applesauce.)

Ten days later: Still no relief. Prilosec doesn't help at all. Daughter feeling semi-normal, although still having pain several nights a week.

Throughout the summer: Several bad "flare-ups", still no answers. Gi periodically unavailable.

August: "Enough is enough!" I called the ped. and said my daughter was still suffering and that I absolutely had to find some answers before school started again. Finally, the voice of reason. Ped. prescribed a gluten-free diet, and lo and behold--PAIN FREE a day and a half later!

November: Bad flare-up from cross contamination. I seek a new GI, but am put on a 6 month waiting list.

January 2009: I send biopsy report and celiac panel/labs to new GI and am told to bring my daughter in the NEXT DAY. New GI is wonderful! Supportive, kind, citing studies about OVERWEIGHT celiac patients that don't fit the protocol. He sends the biopsy to another pathologist and it shows SUBTOTAL VILLUS ATROPHY.

Finally, the (not so) happy ending. My daughter is doing just fine (with exception), thank you very much. We love the new doctor and are now able to live our lives with some measure of certainty again. At this time, my baby is no longer having stomach pain or symptoms. Liver enzymes normal. She does not sleep walk (something she never remembered doing), and has mostly recovered from the meltdown of the diet change. She still struggles with the social issues. She still has some leg and finger pain, as I have mentioned in another post. And as a side note, her mood swings seem to have improved. One last thing--my daughter now has white marks on her teeth.

[mommida]

WOW.

Congratulations! You have done a great job as your child's advocate. Finally you have some answers and your child is on her way to healing.

Welcome to the board.

[mimommy]

WOW.

Congratulations! You have done a great job as your child's advocate. Finally you have some answers and your child is on her way to healing.

Welcome to the board.

Thank you, thank you, thank you! I am so grateful to have found this board. I have already learned so much from you. I hope that my child's experience will help others, as well.

[mommida]

I do feel like thanking Scott and everyone who posts every day! Having your life change so quickly and completely needs some type of support system. Unfortunately some times our family and friends can't be that support, because they don't understand. Having this on-line information and support is our life-line.

I noticed your from Michigan too!

Laura

[Fiddle-Faddle]

I just wanted to mention (and you can pass this on to your daughter if you like) that I lost 20 pounds in a very short period of time, after going off gluten--and I wasn't even trying to lose weight. I had been slender most of my life, but gained weight as gluten intolerance symptoms appeared in early adulthood.

It's not the carbs--it's the gluten! The reason low-carb diets work is that they are by definition low in gluten!!!

I hope the same holds true for your daughter. One thing, though--when I was first off gluten, I did NOT eat the gluten-free breads, cakes, cookies, etc. I did try gluten-free bread, but didn't like the taste, and besides, it felt like I'd swallowed a brick.

Only later did I learn that

1) it's best NOT to eat the gluten-free breads for the first few months gluten-free, as they are very difficult for a celiac-damaged tummy to digest and

2) gluten-free breads are VERY high calorie/high fat--much more so than regular bread.

I do eat homemade gluten-free bread now, without any problems (and it tastes way better than the pre-packaged styrofoam they call gluten-free bread), but I don't eat it every day. I do eat lots of rice and potatoes, and lots of veggies and fresh fruit. I realize, though, that NOT eating gluten-free bread might be very, very tough for a newly diagnosed celiac pre-teen.

Best of luck to you and your daughter. I'm glad you found your way here, and I hope things just continue to improve. Please post whatever questions you may have about foods and recipes and things, and lots of people will answer! Keep us posted, okay?