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Member Since 25 Aug 2006
Offline Last Active Yesterday, 07:29 PM

Posts I've Made

In Topic: Is The Endoscopy Even Worth It?

Yesterday, 01:11 PM

Devil's advocate: Pre-existing condition = uninsurable. If the ACA is overturned.

I have a genetic, progressive neuromuscular disease, proven genetically, Hopkins geneticists advised us against having our kids tested.

As much as I think our government needs some serious overhauling, I do not think they will allow insurers, no matter who is behind the policies, to discriminate in future

because everyone has a pre-existing condition.  Some more serious than others but almost everyone out there has a health issue which can be classified as such.  If they want everyone insured, they cannot allow this to happen.


They do need to find tune that because althought the ACA claims they do not discriminate, there's a big catch that no one seems to want to talk about.  They can legally charge you up to 3X the rate of a healthy, young person.  Those of us with pre-existing conditions will end up with policies you will not be able to afford and you cannot get subsidies unless your income is on the lower side. 


I agree that the less your insurance carrier knows about your medical problems, the better.  I chose to pay out of pocket for my gene testing and blood work 10 years ago because of this and a good thing because I have a double Celiac gene and I failed all the testing by huge numbers.  :(

In Topic: Afraid Of Colonoscopy/endoscopy

Yesterday, 10:16 AM


If your biopsy comes back fine—congratulations, you’re not suffering the inflammation and villous atrophy that most of us have had to deal with!

However if the “optics” of your endoscopy suggested celiac disease, your biopsies will likely confirm this. IF you’ve stuck to a gluten-inclusive diet (have you?)
If you have some optical change in your gut, but a clean biopsy, there are a variety of other conditions that may cause some inflammation or visual difference in the proximal gut, all of which are treatable & manageable. Your doctor should have next diagnostic steps for you if that is the case. There are also a number of “functional” disorders, which mean that though you’re experiencing frustrating symptoms, there’s no damage in your gut. Again, these are treatable.
Glad to hear the procedures were no big deal. I’m sure Joan Rivers was having a more complex procedure—and was also eighty-plus! We live in a good time, inasmuch as the sedative drugs used for these procedures are safe and very effective. I’ve had two endos in two months, and likely another one this year; I’ve learned to shrug them off. Last time I got mad at my GI for not sedating me enough!!


A negative biopsy does not rule out Celiac Disease.  If there is inflammation of the small intestine or changes that can be seen with the naked eye, it very well still could be Celiac, regardless of a negative biopsy.  Patchy damage is patchy damage and this is where people get bad info from doctors when they don't hit the right spot.


If the biopsy comes back negative for Celiac, the next step would be to do a gluten free trial and have genetic testing done, to see if it's even possible to have the genetics to trip for the disease.  There may also be signs of early damage from Celiac, such as increased numbers of IEL's or scalloping of the duodenum.  All of this should be taken into account before excluding Celiac.

In Topic: I Think I Might Have Hashimoto's - What Test Should I Ask For?

04 March 2015 - 02:11 PM

If your insurance requires that the TSH and free T4 need testing before they can do the rest of the panel, then go with that for now and see what the results are.  If they come back OK, then insist that your doc run the rest of the panel and reiterate that you are having major hypothyroidism symptoms.  I never understand how an insurance company refuses to do a whole thyroid panel when one test may be off, and that one test may be the one you didn't do.  <_<


The TSH is generally considered high when it goes over 2.5 and it can mean you are hypothyroid.  However, everyone is different and has their own level within that range where they feel good.  Maintaining it around 1 is optimal but having a higher number does not mean you have a problem.

In Topic: California Pizza Kitchen

03 March 2015 - 12:32 PM

Thanks for the Pizza Kitchen heads up.  I'm sitting here feeling sorry for myself because eating out is now looking like a pipe dream.  I am only 2 weeks into my diagnosis with Celiac and keeping hoping it's a mistake.

You are allowed a small time frame for feeling sorry for yourself but I can really assure you........you will be able to eat out again, probably in time for summer, if you follow the diet strictly and let your gut heal.  You will learn, over time, how to eat out and what places are safe for you.  I have been doing this for 10 years and my life feels completely normal and like everyone else's who do not have Celiac.  There are many safe places to eat for us nowadays and I say that as a very sensitive Celiac.

Hang in there........it will get better!

In Topic: I Think I Might Have Hashimoto's - What Test Should I Ask For?

02 March 2015 - 06:49 PM

Wow! I'm surprised to see so many doctors have graduated from The Bad Doctor School.
While it's comforting to know you all understand what I went through, it is very unfortunate that it is so common and has caused needless suffering. I'm going give that doctor heck until he agrees to run these test! Doctors are service professionals who should be working for us after all. It's just so hard for me to remember that when they walk through that door.

Go get 'em, Tiger! Look them straight in the eye, tell them what you need and ask them to make it happen........with a smile on your face! Let us know what happens!