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Electra

Wish Us Luck Today!

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My daughter is seeing the dermatologist today and I did succeed in making her break out in one tiny little spot. She also has a small one on her face that she's had for a week or so. I mobbed her hair down with conditioners with wheat in them this morning hoping to get an even better reaction. I also rinsed it all out in the tub and let her play in the water for a while. I did rub a bunch on her skin too lol!! I'm not sure if it will do anything but it's worth a try. I'm hoping they can get a good sample for the test, so we can get a definitive diagnosis!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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Good luck today Angie!

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Best of luck today, Angie :) Hope this leads to getting some answers!


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Good luck today. It dawned on me last nite that you could have slipped some plain flour (or some with sugar in it) onto her crackers or popcorn and she would not have noticed it either.

Two year olds are sooo easy to fool. You can forget it when she is 19 ;) marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Thanks so much for your well wishes. We actually didn't end up doing the skin biopsy. The specialist seemed very good and seemed like she believed me (of course she had my daughter pediatrician records with the rash well documented on them). She actually gave me the option and said if I wanted her to have the biopsy I could, but she said she thought we would have a better chance at getting a positive if she were having a breakout. She also said that my daugher is at the absolute WORST age to do it. She said it could mentally scar her for life and make her hate doctors forever. She suggested we go to the GI in a couple weeks and have him do the intestinal biopsy and if that comes out negative then we can try to find a doctor that will do the biopsy with general anesthesia.

My plan is to try and get her to break out before her appointment with the GI specialist and then hopefully I can talk him into sending my daughter to another doctor in the same area that is willing to come in and do the skin biopsy at the same time that she is having the intestinal biopsy. That way she only has to go under anesthesia once. It probably won't work out the way I hope, but at least I'm headed in the right direction (or so I hope lol)!!

Thanks again for all the good luck vibes!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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Hi. I've been reading through some of the postings on the site tonight and decided to join. Thanks for providing this forum for discussion.

My twelve year old daughter has had a strange rash for approximately the last year. It started behind her knee and initially looked as though it was a mosquito bite. As time went on, the rash spread the the fronts of her knees, elbows, back, hips, tail bone, shoulders - basically all over. Our GP diagnosed the beginning rash as ringworm, but when the topical hydrocortisone creams failed to clear up the problem, I began to wonder. The next diagnosis was eczema - steriodal ointments failed to clear up the problem either, nor did the 'holistic' medications/creams that I ordered off of the web. After much frustration, I finally insisted that my GP write me a referal to see a dermatologist. After several visits and more steriods, I requested a biopsy. The results came back today, and the diagnosis is DH - at least for right now. The doctor did another biopsy from a non-rash area to confirm and we're being sent for blood work as well.

The doctor discussed going gluten free, and I have no issue with this other than finding decent flavored foods, learning how to cook without gluten products and convincing a 12 year old that her life will continue without Pizza and Eggo waffles; however, he also mentioned Dapsone as a potential treatment. I'm wondering if anyone has taken this medication and can let me know about the potential long term side effects. From my initial poking around on the internet, it sounds quite dangerous - especially for a child. Any help or advice would be greatly appreciated! Thanks!

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