Frustrated! Should I Test Or Not?
Posted 25 February 2009 - 09:19 AM
I went gluten-free about 5 months ago and had an immediate and profound relief from my symptoms, which included almost daily migraines, GI symptoms, and extreme stomach pain.
I identify myself as 'gluten intolorant' and am fine with the dietary restrictions.
A majority of my mother's side of the family have definitive diagnoses of Celiac.
My mother has symptoms that respond to diet, but was negative on the blood test.
People keep telling me I should get tested. My husband's gastroenterologist (DH has Crohns' and for some reason decided to tell his doc my story) insists I go back on gluten and get tested. Friends of ours are all on my case about testing, and now my husband is bugging me about it! Ironically, it was his idea that I 'try the diet' instead of getting tested way back when I first suspected gluten and talked to him about my options - to test or not.
Everyone is driving me nuts and making me feel like I'm not taking care of myself! My thinking is: WHAT will I gain from going through the misery and getting tested? I refuse to do it just to stop the nagging, but it's getting really depressing having people I care about disapprove of my decision. Truthfully, if I tested and it was negative, I would still go back on the diet! I feel like all I will gain by being tested is a new pre-existing condition I can be descriminated against with.
Please tell me what I should do!
Posted 25 February 2009 - 09:21 AM
Answer this question for yourself. What would you gain?
WHAT will I gain from going through the misery and getting tested?
- James Watson
My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant
Leap, and the net will appear.
Posted 25 February 2009 - 09:52 AM
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
Posted 25 February 2009 - 12:16 PM
It is your body and your decision. You could consider a short 'until I react' challenge if you haven't had enough of them already through cross contamination and the slip ups we all make in the beginning. Your response might be enough to at least get DH on your side.
"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 25 February 2009 - 12:49 PM
1. What would you do if you got a positive diagnosis? Would it change anything in your life?
2. What would you do if you got a negative diagnosis (because a negative is likely after 5 months gluten-free)? Would you go back to eating gluten or not?
3. Are the answers to questions 1 & 2 worth going back on gluten for?
Peanut-Free since July 2006.
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