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New diagnosis

Ffergie

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Ffergie Newbie
Ffergie
Posted

Hello all.  With this new diagnosis, I am madly searching for information and found your group.  Let me bore you with my story: my sister has recently been diagnosed with Celiac and, given symptoms that I have had for many, many years, she has been after me to be tested for Celiac.  I finally gave in and requested to have blood tests done. Today the results of my TTG IGA came back as positive.  When I asked what my reading was, I was told that normal is <16 and mine is 35.  I am now trying to make sense of this news in the hopes that the symptoms, cause heretofore unknown, will leave me.  If I understand correctly, I have no choice but going gluten-free; which I consider a fair trade for better health.  I am somewhat overwhelmed by what my next steps should be, endoscope or no endoscope, dietary consideration and any other options.  I will be reading through the various forum topics for clarity and guidance.

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DevilGluten Apprentice
DevilGluten
Posted

Hi Fergie.  New here too.  I think the endoscopy is the more reliable test.  They'll take a biopsy and that will confirm what the blood test shows.  I am in the opposite boat... last year I had a blood test that showed negative but my recent endoscopy showed Celiac.  I've been furiously researching too.  Gluten-free seems to be just about the only treatment.  Not sure if there are any drugs for it or anything.  Haven't followed up with my GI doc until I get my next round of blood tests done.

It's gotta be pretty helpful to have a sister with the same condition though.  Lean on her for advice, recipes, and stuff like that I would say.  Maybe she can help you avoid some pitfalls us newbies would normally fall into.

squirmingitch Veteran
squirmingitch
Posted

Gosh I'm so sorry no one has replied to you guys.  Ffergie, You need to keep eating gluten every single day until an endoscopy with biopsies is finished. Also weren't there other blood tests in the panel they did on you? You only mention the TTG IgA. If that's all they did, they may want to do more serum tests. The gold standard in diagnosis is positive bloods along with positive biopsy. I doubt you will get a diagnosis any other way.

You guys both need to read the Newbie 101 which is pinned at the top of the threads in the Coping section.

Not eating gluten is the ONLY treatment for this disease. There are no pills or drugs for it. This is serious & you need to take it very seriously -- no cheating and be very strict on the diet, be very careful not to get cross contaminated. Again, read the Newbie 101 as that will explain a whole lot that I am talking about & how to keep yourselves safe.

Ffergie Newbie
Ffergie
Posted
  • Author

Thanks for the reply, squirmingitch.  Not sure what/ if other tests were done other than TTG IgA but I will have to check.  In the past 2 weeks I have been eating gluten-free and have felt great!  No headaches and I seemed to have a new "brain clarity", no fog.  I have been reading labels closely but last night, I had a chocolate bar and didn't read the label.  This morning, my old headache is back and I feel like crap!!  When I read the label, I see wheat flour; coincidence, I don't think so.  We will see what happens in the next couple of days.  If there is even a remote chance that gluten is responsible for my past 40 years of headaches and numerous other symptoms, there is no way that I will go back on gluten in order to have the biopsy, I will base my eating habits on the TTG IgA.  The past two weeks or so of symptom-free life has given me a new appreciation of what "feeling good" means.  I have started to read the Newbie 101.  Thanks

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