Not Getting Better Please Help
Posted 21 November 2012 - 10:58 PM
Posted 22 November 2012 - 05:18 AM
Have you spoken with the doctor who diagnosed you about your continued problems? There may be other things in addition to celiac that need to be ruled out. Are you taking all the precautions we need to take with our food? We have to be very careful about cross contamination and make sure we are not doing things like sharing toasters, butters, condiments etc with gluten eaters. We need to replace strainers, wooden utensils, toaster and need to be very careful to make sure that if we eat out we are eating from a gluten free menu at a place that knows to take all the precautions we need to take.
"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 22 November 2012 - 05:21 AM
I didn't get better eating gluten free initially either. I tried eating only processed foods made in dedicated facilities and that helped quite a bit. I did better still when I eliminated all of that and went to produce and meat only. I was able to add back dairy. Now I need to be even more careful than that about cc. I am a super sensitive celiac, sensitive to very low levels of gluten.
I keep careful track of what I eat and what symptoms I get with a food/symptom journal. That way I have found foods which I can eat which don't give me any symptoms.
Have you been to the doctor? There are other conditions which you could have and your doctor could advise you about that.
Posted 22 November 2012 - 07:20 AM
June 2012 positive visual of celiac disease from gastroscopy
Posted 23 November 2012 - 08:40 AM
Best wishes. I hope you feel better soon.
"Acceptance is the key to happiness."
ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012
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