Symptoms Of Daughter And Son

[kphillippe]

In August my daughter had severe hip pain and fever--after ruling everything out she was diagnosed with Toxic Synovitis...basically an inflamed joint due to the immune response to a virus.

On and off she would describe mild leg pain, until late February. She was crying in pain. The pain now comes and goes. It is always in her left leg. She has scolosis. She has had a back MRI to rule out any nerve issues. She has been to a rheumatologist. Blood work for RA was negative.

I have sjogren's and sub-acute cutaneous lupus.

Since the leg pain starting in February, she has experienced: 7 cavities, extreme fatigue, pale color (dark circles under eyes), 3 or 4 spells of vomiting (but definately not ill), a back X-Ray that showed constipation.

As I began to search for what could possibly be wrong, I came across celiacs. I acutally thought more about it due to symptoms of my son. He throws up often, especially after breadsticks, cup cakes, or pizza.

DD was test 2 weeks ago. Her anti-gliadin was +, but her endomysial was -. Pedi said she would send to GI and we ordered the blood work for son.

His results were the same. + anti-gliadin, but - endomysial.

Ped is going to call GI about what to do next...since only one test was +...what does that mean?

Does anyone here have any thoughts?

Thanks in advance.

Kristi

[shayre]

I don't know if I'll be much help, as I am still trying to muddle through my own issues. I was "unofficially" diagnosed with Celiac disease. My blood tests were negative, and my biopsy was negative. However, I had already been on a gluten free diet for a few months thinking that I might just have a gluten allergy. I had the genetics test done, that came out very high risk for celiac disease. 2 of my specialist docs said that just means that I'm genetically predisposed to any autoimmune condition...however they decide to manifest themselves. My GI doc though says that he knows that I have celiac disease, but just can't prove it. I have come to know the same thing from people on this site, and from being free from gluten. Maybe a genetic testing might help. My gliadin was negative, yet I still have ALL of the symptoms of people with severe celiac disease, or people who have had undiagnosed celiac disease for a long time. I would say to you...get the GI biopsies ASAP...BEFORE you take them off of gluten. I wish that I would not have been gluten free for my tests...it will always make you wonder. But get it done quickly, so that the damage doesn't get worse if they have it. I have also been severly constipated my entire life, so that could be a sign. Are that intolerant of dairy? That is also a first sign.

Keep asking questions and doing your research. There are a percentage of people who react as a celiac, but do not test positive (gluten sensitive)...and you actually have a positive test. I would bank on that!

I actually logged on here to ask questions about my son. His tests and biopsies were negative, yet he still makes me wonder because of certain things. He is lactose intolerant, he is super-sensitive to food dyes and nitrates, he has always been smaller and he gets emotional if we run out of vitamins...like he might be defficient of something. That brings me to another question. Have they been tested for vitamin deficiencies? There are common low vitamins for celiac disease. Iron is one of them. That would explain your daughters fatigue and paleness. Vit D,K,Folate are other common ones.

Keep asking questions. These people have helped me way more than the doctors ever have!

[shayre]

Oh yeah, and celiac disease can cause tooth enamel problems...so I'm learning the hard way. So the cavities might be an issue from weakening tooth enamel, combined with any sugary stuff or juices being able to settle in the weaknesses. I think that few dentist know what to look for in celiac disease, but I found a dentist that is well-informed of it.