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triggfamily

An Emotional Rollercoaster

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My 7yo DS has been having stomach aches and multiple loose stools a day for at least a year (that I can remember). I have been blowing them off thinking he just has a sensitive stomach. This of course goes with him weighing only 40 lbs, no buttocks, has days/weeks at school where he mentally is not there (teachers call me), and he can be oh so moody, and has the canker sores in his mouth (his first episode about 3 years ago was the worst, on gums, cheeks and down the back of his throat).

Anyway, about a month ago I found out that Celiac runs in his dads side of the family and that maybe I should have him tested. I did, it went to that Promethius (sp?). Test results came in this week. Talked to his pediatrician on Monday, said he is probable Celiac and should go on the gluten-free diet and visit a nutritionist. Also needed to see a GI specialist. Well, so that GI specialist the next day and got a different story.

I guess promethius tests two genes, one of his was positive. They also test, I think, 4 antibodies and his only showed positive on one, the doc said it was the least reliable one. So now we are doing a whole round of testing. She did a blood draw that consisted of the comprehensive panel, both pancreatic enzyme tests, CRP, and a CBC with Manual Diff. Of course the blood was drawn without any fasting, so I have no idea how accurate they will be. I also have to do 3 stool tests, for Stool O/P x1, Stool Giardia Antigen and Stool Reducing Substances. Finally, she also ordered an upper GI test and an ultrasound. Then she put him on a lactose free diet for about 10 days.

I understand why she wants to make sure it is not just milk, gallbladder, hernia or ulcer before having him go gluten-free and be diagnosed as Celiac, but with all these tests, wouldn't it have been easier to just do the biopsy? On top of it, since I live in NE Wyoming, she comes up from Denver once a month, and we don't get to see her again until January 15th to find out any results. I don't doubt my DS has a milk intolerance, he did as a baby then seemed to grow out of it. I hate seeing him suffer so much because he is already sick most of the time with allergies and constant surgeries on his ears to try to fix the damage from so many ear infections as a baby.

I guess what I am trying to find out, other than just venting my frustrations with diagnosis, is this typical to go through? Is it possible it could be one of the things she is testing that could be causing him such discomfort? I guess she wasn't happy with me when I told her I couldn't pin point his pains (which happen just above and around the belly button) from being caused right after his meals or anything, and I couldn't say he wakes up at night from them because he has something like night terrors and walking in his sleep all the time.

Thanks for letting me get my emotional rollercoaster out.

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Celiac.com Sponsor (A8):

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What is promethius?

All Drs troubleshoot in different ways. I've not been dx'd so maybe someone else can tell you their experiences.


Osteoporosis, and sacroiliac arthritis diagnosed 32 yrs of age.  Chronic low wbc, Severe constipation, Migraines, severe GERD, multiple miscarriages, Sjrogen's disease, positive ANA, thyroid nodules (hyperthryoid), fatty liver disease with elevated enzymes, low vitamin D, low protein, IBS, SIBO, Discoid lupus, mulitple food allergies and massive hair loss.  I left my career because I was too sick to keep working, and it was devastating because I couldn't apply for disability without a diagnosis.  My daughter was a preemie and she has Central Auditory Processing Disorder (CAPD) and had a positive ANA and Rheumatoid Factor at 16 and now has been dx'd with Hashimoto's.

 

Allergic to:  corn, rice, beans, tomatoes, dairy.  Not diagnosed as celiac.

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I spelled promethius wrong, should have been Prometheus. This is their site http://www.prometheuspatients.com/ . They just do blood tests. My DS had the Celiac Plus done which tests for antibodies and the genes. Their website is not very informative with the details.

Thank you for your feedback though, I wish I could do just a self-diagnosis, but because of the school and his other medical issues, I need to have an official dx. I do know he has been on this lactose free diet since Tuesday and he is still going several times a day and mostly still loose. Except for the first day, he went all day until that evening without going and it was kind of normal, but within an hour of that one he was back again. I figured with being lactose free he would stop having so many bm's.

I know its a wait and see game on a lot of this stuff, but it can be so frustrating. I am glad I found this forum, there has been a lot of information here I have been gathering, and I am looking very forward to the day that I might be on the other side of the fence being able to help someone else out.

What is promethius?

All Drs troubleshoot in different ways. I've not been dx'd so maybe someone else can tell you their experiences.

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Has anyone suggested www.enterolab.com for tests my family has had good results.

I have friend who took his daughter to Seattle childerens hospital where his daughter finally got a diagnosis, the doctor then tested the whole family, the mother and another daughter were also positive.

Trying the diet for at least two weeks is the best test.

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