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BellaRose

Poster Child Waiting For Results

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I finally demanded my family doctor to refer me to a specialist after suffering from Unknown GI symptoms for most of my life, much to my frustration always being diagnosed with stress, anxiety causing me to have these symptoms. I always knew there was more to it, its not normal for a seemingly healthy young woman to have the symptoms which i do. Its almost like a curse never knowing when you have to go, when what you eat will contribute to the onlay of the symptoms. I also felt i've missed out on so much stuff because i was so worried about having to run to the bathroom or something triggering that I would never want to be caught in this situation, so anything where a bathroom wasn't in walking distance was out. It was an amazing feeling when i came on this site and felt "This is me". Everything GI the relentless itching, so bad i'm bruising my sking or making myself bleed. I always got the blisters on various parts of my body, no doctor ever knew what they were and diagnosed them with Hepatitis. Unbarable irritability, i'm a very kind hearted person but sometimes it just feel like beast, mostly because of the uncomfort I'm always feeling. The stomach aches so bad i don't feel like i could talk or move, the D 5 times a day. The "brain Fog" i never heard anyone else experience, but oh my goodness other people do. I get so zoned out i can't think i feel dumb, this coming from a person with a 4.0 in college & through out their whole life. I also have the symptom of weight loss with extreme hunger, People thought i had an eating disorder and staged an intervention because I was down to 105 lbs on my 5'7 frame, again this was only contributed to the stress in my life and nothing else. When i have severe episodes I can' t eat anything for a week, feel so malnurished and then finally have these episodes where all i can do is eat eat eat. Then my weight starts to go up a little and boom, loose 5 lbs. I maintain a healthy diet i was vegan for 2 years, just recently started eating eggs. I'm lactose intolerant/allergic to milk so haven't eatten that in almost 10 years. But the irony, when i thought I was doing my body justice, through avoiding meat (all the by products, hormones, chemical) i may have been harming myself even worse through consuming so much gluten every day in EVERYTHING. Anyway, hopefully I will find out today whats going on, and i'm hoping this is what it is, not because i want to have a disease but because it may finally ease the inconvienience my body is constantly throwing at me. If its not this i dont know what it is i feel like i'm the poster child of the disease.

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I Actually got them all back today and they all came back negative, I feel more discouraged than ever. I just want to know whats wrong with me. His next best guess is Crohns or IBD. I was almost prepared for celiac because at least it is something that i would be able to handle on a preventative basis, not medicinally or invasive. *sigh* i will see.

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I Actually got them all back today and they all came back negative, I feel more discouraged than ever. I just want to know whats wrong with me. His next best guess is Crohns or IBD. I was almost prepared for celiac because at least it is something that i would be able to handle on a preventative basis, not medicinally or invasive. *sigh* i will see.

DON"T TRUST THOSE TESTS!!!!!!! Now that you have had the testing and been pronounced 'not celiac' by your doctor do the diet. I can not stress that enough. If you do have Chrons or IBD the gluten free diet is not going to effect the results of any of the other tests they are going to do other than the ones specifically looking for celiac (endo biopsy). I wish I had these boards years ago when I was struggling to get relief from my symptoms. It would have saved me countless years and a lot of residual damage if I had been diagnosed before I was almost dead. No doctor ever told me what the celiac panel was, just to be glad it was negative. Never a word about the abundance of false negatives, never a word about trying the diet to see if it helped, just a no it's negative here's your appointment with pain management, go get another 13 tubes of blood drawn, spinal taps and while we are at it let's do electromylograms (they stick needles in your legs and then shock you, not really all that bad when you have so much nerve damage you can't walk). Sorry this turned in to a bit of a rant. I just don't want the same thing to happen to you.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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