I Can't Get A Diagnoses Other Than Ibs....so Frustrating
Posted 09 March 2012 - 12:50 PM
Posted 09 March 2012 - 01:03 PM
I would suggest that you get on the diet very strictly, eating whole unprocessed foods and no dairy or soy to start. Your body will give you the answer. I can't say for sure but you do sound like you have found the right place. Read as much as you can here and ask any other questions you need to ask.
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity 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)
Posted 09 March 2012 - 01:27 PM
As for eczema, I can't offer much advice as I still spend 100% of my time itchy but I'll share what helps me. Sometimes I'm simply uncomfortable, sometimes I feel like I could crawl out of my skin. It helps some for me to use Eucerin calmin body wash. I also go through a lot of lotions and creams. They don't fix the itchiness but they help some. It makes the difference between tolerable and scratching myself until I bleed while simultaneously being unable to stand the feel of anything, even myself or the air touching my skin. I'd sooner not wash my hands after using the restroom than to wash them if I left the house without lotion. (Yeah, gross vs. being driven criminally insane. Both options suck.) I was told by customer service that Neutrogena hand cream is gluten free so should be fine to use. (I get the fragrance free one, but love the smell of the smelly one.)
Last tip, buy a back scratcher. I picked up a cheap wooden one at a Walgreens for like 3 or 4 bucks. Now that I have it I couldn't imagine life without one. Once you have one you'll wonder how you ever lived without one. It truly is a life changing experience when eczema has you on the brink of itch induced insanity.
Don't give up hope! Someone will wander around after me and tell you how they were diagnosed with IBS (which is not-so-affectionately called I be stumped around here) and it turns out it was celiac all along. Worst case scenario, if you have an uncooperative doctor you can always go gluten free and see if that helps any.
Gluten free January 2012.
Tyramine free June 2012 - slowly getting a few foods back at a time.... scratch that
Low Histamine April 2013 - I swear this better be the last time I have to restrict my diet because giving up chocolate is the final straw
Iodine free briefly fall 2012
If ever you are feeling like you’re tired, And all your uphill struggles leave you headed downhill
If you realize your wildest dreams can hurt you, And your appetite for pain has drinken its fill
I ask of you a very simple question, Did you think for one minute that you are alone
And is your suffering a privilege you share only, Or did you think that everybody else feels completely at home
Just wait.... and it will come -- Just Wait by Blues Traveler
Posted 09 March 2012 - 07:09 PM
Just letting you know that you are not alone in having issues. I have PCOS as well, I got disagnosed one year ago but not anything other.
I am do researching to see if PCOs does really be caused by the gluten diet plus other food intolerance? Just let you know that I am still learning more about this disease and intolerances everyday. However, welcome here!
Disagnosed with PCOs Dec 2010
Disagnosed with Asthma Sept 1993
Posted 09 March 2012 - 08:51 PM
Posted 09 March 2012 - 09:05 PM
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