Ready To Throw In The Towel!
Posted 24 February 2005 - 01:24 PM
So, after all of that venting, I guess , here's my question:
I got my test results from my doctor. They show Antiendomysial < 1.5 (the lab work says "<1.5 Negative, no significant level detectable), Gliadin IGG 67, high, reference is less than 20, IGA 11, normal, reference is less than 20. My question is, do I have this disease or what? I've done a great deal of research and have read that the antiendomysial test is much more accurate than the antibody tests and that the IGA is a sign of celiac, not the IGG. I've thought about doing a gluten challenge and getting retested, but the only gastroenterologist is 80 miles away (read: road trip, bad for someone with chronic diarrhea issues) and I've already spent thousands of dollars on medical bills in the last year and am not sure I want to pay more. Any thoughts would be greatly appreciated! I have thought that maybe I was just trying to "cop out" of having celiace disease because I don't really want to have it, but I've learned that eating gluten free isn't so hard or terrible these last few months, and don't mind doing it IF this is what I really have and IF my health got better instead of worse.
I would really appreciate any help or guidance. I eat a pretty bland diet nowadays because I'm hoping my stomach will feel better, but it's just gone from bad to worse and now I'm thoroughly confused about my test results. I consider you guys the "experts" moreso than my doctor ninety percent of the time, so I would love to hear what anyone has to say!
Posted 24 February 2005 - 02:02 PM
Posted 24 February 2005 - 02:34 PM
Posted 24 February 2005 - 03:32 PM
There's a book written about it--the easiest way to start it--called Breaking the Vicious Cycle. You might want to give it a try because if you can really stick to it, you might get some great results.
Have you looked into other things that could be causing your continued symptoms? Allergies, other intolerances, diseases or conditions commonly accompanying celiac, such as lupus? Are there any structural problems that your doctor has looked into? Finally, there is no way gluten is getting into your diet, is there? All it takes is one wrong product to mess up the whole thing--make sure lipsticks and other makeup, shampoos, lotions, are gluten-free--don't lick envelopes (which may or may not have gluten)--the little things. Just make sure you're not getting contaminated.
Keep us posted .
Posted 24 February 2005 - 04:34 PM
Posted 24 February 2005 - 04:48 PM
Thanks so much for everyone's responses! I just hate to do a gluten challenge and spend money on another dr. visit and more tests but my blood test results are appearing more and more dubious the more research I do.
Posted 24 February 2005 - 05:05 PM
Check out http://www.wrongdiagnosis.com/ -- you can search by symptom and maybe you'll find something that matches up with your problems. At least you could find a couple possibilities, ask your doctor about them, etc.
Posted 02 March 2005 - 02:27 PM
Without digging my results out what our friends have said about the relative meaning of the individual readings is no doubt so but I do know the gliadin referred to is a component in gluten from four different grains (only not oats where it is avenin).
Your having stopped then started again may have affected readings as well as your symptoms.
The best thing for you to do is, go accompanied where you are going.
Throughout my transition I was seeing a nutritionist qualified with the Institute of Optimum Nutrition (ION), officialdom has got no time for them but they know their stuff and I got a lot of test kits from Great Smokies through her (the stool one is droll to use).
Even if it wasn't going to wash with officialdom (which is nonetheless a great disappointment to me) I knew I was being well guided.
In parallel with this I was doing the same as a friend whom I know to be well guided and was also in touch with another bunch of people making the same changes.
I also read up great amounts about the whole subject.
My advice to you is you have made a great start getting in touch with us (says he on his first evening's membership) but do be in touch with more & more people and information.
And spend money seeing a person from the ION or equivalent, not someone who doesn't know things.
My own experience is that I'm still - 2 years off gluten after 48 years eating gluten - in a phase of very variable symptoms. Also I find it impossible to go 100% gluten free because of small amounts in myriad products, unlabelled products, difficulty planning, living single & dyspraxic, finding gluten-free directories too complicated to use in practice ...
The people who do best are couples who are newly retired, their families grown up, neat and methodical, time on their hands. Even if or especially if only one of them's the celiac.
We need to find out from someone who has gone there, what happens to them when they go back to gluten after being off it. In fact that's why I joined this discussion forum only this evening. Maybe you are my answer.
For you, keep looking for more similar answers but I think the meaning of them will probably be, that folks like you & me should persevere as far as possible in the gluten-free diet otherwise the complications may get worse and the recovery slower and slower?
Anyone else got more thoughts & experience on this please.
Wishing you every improvement, not least in morale.
Posted 02 March 2005 - 04:35 PM
- decent probiotics - you and whose army! Without them you and I are outnumbered
- fish oils - since I started on these I felt the sun was coming out (am a bit irregular now)
Person from ION or equivalent should be in the know about these things, also digestive enzymes to combat reflux. Antacids are the exact wrong thing.
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