dearhearts replied to dearhearts's topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsThanks for the responses. I have not had genetic testing done, only the tests I posted as well as a bunch of other tests that only showed the nutritional deficiencies for example my Ferritin was <6 -- (20 - 190). Everything else was normal, thyroid, diabetes screening, liver, kidney, etc. The only thing I think was a little off outside of the nutritional deficiencies and Haemoglobin was the cortisol but was still in normal range 619 (200 - 700). I think you're right Cara, it's probably not terribly important to have a biopsy for diagnosis and I think the only reason I would be waiting for it is because I've been so run down for so long I don't even like to tell people most of the time when I feel unwell because I'm sure they think I'm a hypochondriac. I imagine I'm not the first person to want a solid diagnosis for the sake of other people taking them seriously. But I'm beginning to feel that if it's possible that a change in diet will make me feel like a capable human then I can't really justify not doing anything about it for the sake of authenticity or a government subsidy. I have two young kids and I struggle every day with keeping on top of things. I've had both of my kids tested for celiac and was certain I'd found an answer after my test results came in for why my 4y/o is underweight, wakes up screaming in pain every night and has diarrhoea multiple times a day for starters. No allergy tests for either of them have ever come back with a positive and faeces tests always come back normal as well. I haven't seen the celiac screen results for the kids yet but spoke to a nurse who said they both came back within normal and the lab had noted 'celiac disease unlikely'. I didn't want them to have it, I just wanted an answer, and a way to fix the issues he has been dealing with since he was born and now I'm back to lost again.
dearhearts posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsHi. So... after years of unexplained anaemia and nutritional deficiencies like b12, folate and vit d my dr decided to ask the lab to do a coeliac screen on my blood test last week. These were the results: TTG IgA Ab > 300 (< 15) Deaminated Gliadin Peptide IgG 185 (< 20) IgA 3.0 (.8-4.0) Endomysial Antibodies Positive I understand all the reasons to have a biopsy and to stay on a gluten diet until the biopsy can be done BUT I have been so sick for so long and the past few months it seems to be getting worse. I just spoke to someone with the same dr who said they have been waiting 3 months to get in for a biopsy, although this person had negative blood tests so it is possible that I might get in sooner, but still.... this whole celiac diagnosis thing is very frustrating right? Has anyone had similar test results and had a negative biopsy? From what I have read in the past few days it seems like the damage takes a long time to heal, so if I were to theoretically start a gluten free diet before my appointment and it took two months to get it, wouldn't the damage still be visible if it does indeed exist?