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Slr38 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsFinally Got A Diagnosis....and It Is Not Celiac Disease!Hello Everyone,
I was on this forum a lot in the fall trying to figure out the terrible symptoms I had been dealing with over the last 20 years or so.
Like many of you I had been tested for so many different diseases and had some pretty awful doctors visits. I had so many of the celiac disease symptoms and was certain that is what I had.
I finally decided to visit a Naturopathic Doctor since I was fed up with the mainstream medical system. She took the time to listen to ALL of my symptoms and said "Lyme Disease, I am certain it is Lyme Disease". I never had a tell tale bulls eye rash or remember a tick bite. Turns out that most of Lyme Disease sufferers never did either. I had the blood test (sent to the USA) and it came back positive. I can't believe I finally have a positive diagnosis.
I just wanted to share my story and thank all of you on this board that were a great source of support and help to me!
Good luck to all of you on your journey.
- 3 replies
- 838 views
Slr38 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsPositive Home Test, Negative Lab Test - Manufacturer's ResponseHello Everyone,
A few weeks ago I received a positive result from a Biocard home celiac test. I then received a negative lab result (they only ran one test). I emailed the company to ask them about the different results. This is the response I received:
In clinical studies in the EU where the Biocard has been used and there has been a discrepancy between the equivalent Elisa lab test and the Biocard (Biocard “+” and Labe “-“), over time the “-“ lab tests become “+”. This has been explained by the sensitivity, specificity and cut-off limit of the Biocard relative to lab testing. The cutoff for the Biocard is 5u (international units). Many laboratory tests are between 10 and 20u.
So should I wait to see if I eventually get a positive blood test? Will my doctor even consider retesting? Should I just go ahead and try a gluten free diet?
I have an appointment with a Naturopathic Doctor next week. I'll see what she has to say.
Thanks for listening.
- 5 replies
- 1,379 views
Slr38 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsNegative BloodworkSo after almost two weeks of waiting I finally got my results back.
Turns out they only did the screening for TTG Iga!
Here is what the report says:
Tissue Transgluaminase Iga 1.1 kU/L Ref. Range 0.0 - 20.0
Immunoglobulin A 1.78 g/L Ref. Range 0.60 - 4.20
I saw a Resident as my family doctor was away. He said I did not have Celiac Disease. I asked him if I was not supposed to have more tests done and he said no, this was the only one needed. I know there are more tests to be done but if he says no, what do I do now? I think the lab only runs the other tests if the TTG Iga is higher.
The test screening info section on this site is down for maintenance so I could not look anything up.
Thanks in advance for your input.
- 4 replies
- 685 views
Slr38 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsLactoseHello Everyone,
Lactose seems to be giving me a lot of trouble lately. I had my blood work for Celiac Disease this morning and will find out next week if it is positive or not and if I will require an endoscopy. I know I have to stay on gluten but is there any reason at all to continue on Lactose?
Thank you for your advice!
- 2 replies
- 405 views
Slr38 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsBlood Work TomorrowHello Everyone,
I had an appointment with my doctor today. I told her that I had not started the antibiotics for Lyme Disease because I believe I could have Celiac Disease. I told her my symptoms (again) and how they are also symptoms of Celiac Disease. I told her that I had taken the home celiac test and received a very faint positive result. She was not familiar with this test so I showed her the "Dear Doctor" letter supplied with the test. I don't think she was totally on board but she said testing would not hurt so I have my requisition for blood work for the Celiac Panel. She did not feel the need to retest my vitamin and mineral levels because she said they were "fine". She said very casually "Maybe its cancer." and added Calcium and LDH to my requisition! Let's hope it is Celiac disease she said. The doctor also mentioned that if the blood work does come back positive, they would only give me the diagnosis of celiac disease with a positive Endoscopy result.
So I am off to get blood tests tomorrow.
- 4 replies
- 429 views