Multiple Endocrine Issues

[helen albanese]

My 17 yr old is at issue with celiac which at this point of her life seems like a mild issue. Since the celiac dx, she is also Factor 8 hemophiliac w/the advent of her period( as a child I just thought she was picking at scabs and bruising easy-"delicate child" syndrome,as we Italian see it), Van Willebrand Disease and Ehlos Danlos syndrome (non-vascular).

She was on suppression therapy for three years- Loestrin bid produced gluten free, and then started having headaches june of 06, vision problems, mood swings, overactive libido 12/06. She has developed amenorrhea 12/06 also and started lactating-prolactin spiking from 35 to 80. Lactation stopped about two weeks ago and clumps of her hair fell on Sunday- now there are stomach pains and gi gurgles constipation

[2kids4me]

You're not alone, my daughter is 14 - has Aspergers, hypothyroid, celiac, recovered from Kawasaki, allergic to stinging insects, and is currently under investigation for autimmune hepatitis. My son is Type 1 diabetic, celiac and has thyroid nodules, I have Type 1 diabetes, hypothyroidism, need B 12 injections...

Life is pretty interesting when we go camping or travel anywhere.

Checklist includes - glucagon, gluten free foods, insulin, syringes, test strips, epi-pen, B12, synthroid meds for 2............

The part I find most challenging is keeping on top of multiple medical issues and if they get sick - is it just a "regular" viral ilness or "routine" stomach ache...?

A relaxing time for us is staying home, put in a movie or play board games........ anything else requires planning.

Hang in there, lots more on this site with multiple issues.

Hair falling out must be frightening and frustrating

Sandy

[glutenggirl]

My 17 yr old is at issue with celiac which at this point of her life seems like a mild issue. Since the celiac dx, she is also Factor 8 hemophiliac w/the advent of her period( as a child I just thought she was picking at scabs and bruising easy-"delicate child" syndrome,as we Italian see it), Van Willebrand Disease and Ehlos Danlos syndrome (non-vascular).

She was on suppression therapy for three years- Loestrin bid produced gluten free, and then started having headaches june of 06, vision problems, mood swings, overactive libido 12/06. She has developed amenorrhea 12/06 also and started lactating-prolactin spiking from 35 to 80. Lactation stopped about two weeks ago and clumps of her hair fell on Sunday- now there are stomach pains and gi gurgles constipation

She needs a CT scan of brain with emphasis on pituitary to rule out pituitary tumor. There is a report of acquire cutis laxa associated with celiac disease in the medical literature. The biosies showed IgA deposition which is similar to the findings in dermatitis herpetiformis. I don't think this is seen in ehlers danlos. Below is the link to the article.

www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8776377&dopt=Abstract

[helen albanese]

2kids for me; It was encouraging and sad to hear from someone with children that have similar problems. My older girl: dx with adhd however had shades of aspergers and still does, repetitive language, obsessive behavior but all are marginal.

glutengirl: she had the ct with contrast, definitive test is an mri to check for microadenomas: her insurance didn't approve it. I looked up acquired cutis laxa: thank you for the info; thankfully it doesn't fit.

Lately, my daughter has stopped lactating and has amenorrhea. she is scheduled for cornell in nyc on 3/7 with endocrinology and bld work next week before she goes to check the prolactin levels. her headaches stopped and she says she feels her mind has cleared, I'm sure we can all relate to that.

I just had a "bout" of gluten contamination at a favorite restaurant with a new waitress. When I sent back "the wrong order, waitress informed me that I had ordered just that- I told her she was wrong and I had actually pointed to my order on the menu-I'm pretty sure she transferred the toppings to the new order and it was a heated item. I shared the dish with someone else and he didn't get sick but he is gluten tolerant.I got two days in bed doubled over with swollen joints and cramps not to mention the, ahem, "loss of electrolytes" and muscle spasms. this is day3. Having run several marathons, I can actually say that I feel like I am recovering from a marathon, got the empty unfocused feeling in the front of my head and the slow moving muscle response. I called the restaurant and spoke to the manager and asked her if that was what actually happened and she said she was there 11 years and has never seen anyone do that, the answer I got was not the one I wanted, all she was interested in was absolving herself of responsibility- i'll never go there again.... the food world gets smaller.