Joined Nov 2005
L10: Grand Master
Forum Thread
The Celiac discussion thread....no wheat allowed!!
February 4, 2009 at
08:46 PM
in
Sad
Celiac....I haz it!
This sucks really freaking bad.
Anyone else in the same boat? I literally found out an hour ago...have lots of researching to do.
This sucks really freaking bad.
Anyone else in the same boat? I literally found out an hour ago...have lots of researching to do.
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Look on the bright side, it might be a relief to know you don't have it..
Get it done soon. Nag, Nag, Nag
I
I want to add to the discussion.. if you are a celiac, you should not "cheat" at all. The damage done to your intestines gives you a high risk for cancer and other problems. Eating gluten does serious damage to your insides.
Basically you come off as the bad guy, food-Nazi while the other people try to make you into some uptight crazy person and they even get hysterical about it when you insist NO GLUTEN. I had this experience several times and its really annoying as hell when you spend weeks and months and tons of effort trying to avoid gluten for someone and then people are hysterically and viciously trying to belittle you and talk someone into eating something with gluten in it. Its criminally stupid.
In this case it was especially criminally stupid because the only hope for this person to get her platelets down was hopefuly a gluten free diet if she had celiac , so I tried to make a diet that was completely gluten free to see if her platelets would come down when she was retested in the following 2 months.
Im actually trying to find a gastro guy who knows somethng about celiac right now to confirm this person has celiac, I mainly jumped to this no-gluten diet because its the only real option of avoiding chemo. I HOPE she has celiac disease because the alternative is chemo and its the only option I have now to try to lower her platelet count and the problem is, there's a really long wait for gastro docs and finding one thats decent makes it even harder.
On the topic of docs --- I've found the only hope you have is to read up on any problems yourself and be totally informed. You have to argue with the docs and present a reasonable case for doing various tests as well as know what tests and other treatments are available for you to have any chance of talking them into doing any of them. Its the only way to know what is missing too if they dont bring something up.
Another bad thing about the foot dragging is you waste tons of valuable time jumping from doc to doc and it also gets confusing if one doc finally agrees to do one test and another agrees to do another. If its an emergency like Sudden Hearing Loss which they say should be treated as soon as possible within 2 weeks max ---- it can be tragic. And another thing -- specialists are in short supply here. Not only cant you find many docs who are willing to do lots of tests and who are up on the topics , with neurologists and gastro docs --- it can be a super long wait. Gastro -- a neurologist I found who is so far, fantastic called a gastro doc and the earliest time was in February. One guy wouldnt take Medicare.
One question --- is there a big difference in care with Medicare and other insurance firms? Is Medicare much worse? I assume if you are rich and can pay zillions out of pocket , the care is fantastic. Then maybe it is like House.
She's also gotten really bad after helping bake cookies with gluten flower.
So don't inhale
Now from what Ive read I thought it said even the latter was a diagnosis of exclusion, you reasonably eliminate any other causes then you narrow it down to the bone marrow.
In this case her platelets are sky high -- 1-2 million. The normal range I think is around 600-640 K. This supposedly can cause strokes and heart attacks. Im not even sure on that. Obviously it sounds logical but is there any proof that it is the case? I see it stated everywhere on med sites and docs say it but Id like to know if its actually the case in real life that people with higher platelets are all dying of strokes. The reason I say this is because many people who are found to have abnormalities have lived with them for decades. That doesnt mean ALL people like that will not have strokes but Id like to know if there are stats to back it up because they are putting people on chemo for decades which can itself cause leukemia and other cancers as well as tons of other complications.
See heres a thing on Celiac, Anemia and High Platelets - and sure, it seems like its unusual to have really sky high numbers just from Celiac but in this case they are very high due to Celiac and anemia.
http://www.pubmedcentr
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Did they do an actual biopsy? or were you allowed to swallow the camera pill? I've had both, and the second is way cooler.
Did they do an actual biopsy? or were you allowed to swallow the camera pill? I've had both, and the second is way cooler.
Yes, they did the biopsy.
Yes, they did the biopsy.
There's lots of good advice in this thread, there are also other forums that deal with questions and you can talk to people and seek personal advice.
This is one of the better ones IMO http://www.celiac.com/gluten-free...hp?act=i
I'll trade you warning points for bad advice? deal?
Yes, they did the biopsy.
Yes, they did the biopsy.
The one lady at work has been gluten free for a bit over a year so we are talking and she is giving me lots of good recipes and tips. She also is going to bring me GF cupcakes for my birthday
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The one lady at work has been gluten free for a bit over a year so we are talking and she is giving me lots of good recipes and tips. She also is going to bring me GF cupcakes for my birthday
http://www.deerfieldsg
The first week or so after I found out I just ate salad and grilled chicken. I use my george foreman all the time