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Giving Up On Drs - Going Gluten Free After Negative Ema

MsCurious

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MsCurious Enthusiast
MsCurious
Posted

I'm tired... I'm worn down.... I give up... not on me... on doctors... and here's why:

Most of you know my story, so I won't go down that road, but after random blood tests (dr wouldn't do full celiac panel) and having some negative and some positive... the most recent EMA negative, I have given up getting them to listen to me. Doctor did suggest I might consider biopsy, "if I wasn't convinced of the negative diagnosis"... so after discussing this with my husband, this is the note I sent to Dr:

"Thanks for trying to help with this issue. I know my body, and my symptoms, and the years and years of dealing with this, and the fact that I have the DQ2.5 marker which is the strongest risk factor for celiac disease other than a first degree relative being diagnosed. I also know researchers admittedly know next to nothing about gluten sensitivity, and celiac disease. For instance Dr. Katri Kaukinen and colleagues at the University of Tampere looked at 177 celiac disease patients and found that 22 were serum EmA-negative. A common theme among the 22 serum EmA-negative patients was that they were older and had more abdominal symptoms and other complications that indicated a more advanced stage of celiac disease than their serum EmA-positive counterparts. Interesting, huh? I don't know what the value of a biopsy would be, so I guess based on minimal "testing" on my part with the gluten-free diet, I'll do that and it will be the true test. I believe it will resolve my issues. Your thoughts?"

I have not heard back from him, and the "gist of the note" will probably go right over his head, but so be it. Husband and I tossed it around ... pros and cons of doing the biopsy, and decided against it (treatment is the same either way, invasive procedure has unnecessary risks, would cause pre-existing condition for future insurance, etc). Either way, I need to go gluten free and as one of you always says... "give it a good strict try" ;) ...and that will be the true diagnosis. I know what my body is going through and its NOT normal! As I said before, just one example is the 5 days my husband just had off of work. We were together the entire time, ate the same foods and he was fine, I was sicker than a dog at various times because of what we ate. Doesn't take a rocket scientist to know if it makes you sick you shouldn't eat it. ;) So, NancyL... you may have a week or so on me... but move over... I'm hopping on the bus! :D

I'm sure I'm going to need a lot of guidance and support from all you wonderful people...and thanks in advance for that. You've been amazing ... going through this with me even this far. So I guess I'll go pick up a book or two, clean out the cupboards and fridge... and start the new stage of my toxic free life! :)

Again, thanks to Mushroom, Ravenwoodglass, cassP, IrishHeart, Marlie, and everyone else who's name slips my mind at the moment... you know who you are! :)

Guess this is it, I can officially move from the pre-diagnosis forum! LOL :D I'm a little frightened... but I keep thinking how great I'll feel and that's exciting!

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ravenwoodglass Mentor
ravenwoodglass
Posted

I know your road to this point has been a long one. I hope the diet helps and you know we are all here for you. Anything we can do just ask. Hang in there and I hope you are feeling much better very soon.

IrishHeart Veteran
IrishHeart
Posted

Welcome aboard the "the heck with doctors, I know my body best" bus!! :D

Anything I can do to help, I will.

The people on this forum have guided me, too. I do not know if I could do this without them.

Those who live it know more than any doctors.

Welcome to gluten-free living!!...it's time to stop the suffering..and start feeling better! ;)

cassP Contributor
cassP
Posted

thanks for the shoutout ;)

good for you for being strong and for taking the time to write that letter- i agree- it will probably go over his head...

question- have you not been 100% gluten free yet?? were you waiting till testing was done?? im just curious- cause my body definitely went thru changes when i changed my diet. it went through a lot of changes a decade ago when i took wheat out 90%... but then this last time that i took gluten out 100%, i went thru even more changes. and if it makes you feel any better- i didnt have a diagnosis either! i had a positive EMA, but the rest was iffy- and i couldnt get the endo for insurance reasons. i only got the motivation to go 100% after i got my gene test back (2 DQ8s)- that was it for me. and if i was you- a DQ2.5 w/symptoms would be enough for me too.

good luck and vent here whenever u like :)

MsCurious Enthusiast
MsCurious
Posted
  • Author

OMG!!!!!!!!!!!!!!! Venting already! ... pfffffft! You all read the note I sent the doctor (above)... and well, I got his reply... *BIG OLE HEAVY...TIRED OF TRYING TO EDUCATE THE DOCTORS... SIGH*

This is what he said:

"I would try gluten-free diet for 6-8 weeks. Then consider biopsy, which is definite diagnosis tool for this problem." <---- MY DOCTOR SAID THIS!!!!!! :(

This is my regular doctor... VERY NICE guy... but totally CLUELESS about celiac disease! He obviously doesn't even realize there would be a 3 month gluten challenge involved with much sickness. I think I'll stick with the woman doctor's advice that I posted yesterday. She said because there's so little known... when she has a DQ2 or DQ8 positive patient exhibiting significant symptoms and they test serum negative... she tells them to go gluten-free anyway.

I could opt to still do the biopsy (now)...and the guilt part of me feels some sort of obligation to my family to find out definitively... so they will get tested if biopsy is positive. Even my aunts and uncles are waiting to hear the results, because some of them and their kids have "issues" that are like mine. But the rational part of me says... the doctors are not too up on things in the USA ... and I'm fighting a losing battle trying to educate them. What do I do? :(

I read a brief intro to a world wide conference for celiac researchers from all parts of the globe, and the speaker said: (paraphrased) Celiac is like a huge iceberg... Sweden has the iceberg exposed above the water line, most of Europe has the tip of the iceberg showing .... and in the USA the iceberg is still completely submerged. :( Doesn't say much for our medical professionals... does it?

Thanks for your kind words of support... I"m still really torn... but had gluten free dinner tonight. Sorry for being so emotional.. I just don't know what to do.

cassP Contributor
cassP
Posted

oh nevermind, i cant write what i was gonna write, cause i dont wanna curse you :huh:

but i can totally relate to u- i wanted an OFFICIAL DIAGNOSIS so that my immediate family would get tested. and yes- i am still struggling with getting my family and their docs to do a celiac panel :(

my dad is going to Mayo this week for full checkups... i gave him an index card with all the info on there... i really hope he gets tested- i just know he has it, and i dont want him to lose his mind like his parents did :(

good luck xx

MsCurious Enthusiast
MsCurious
Posted
  • Author

I just sent a note back to my doctor.... and I was wayyyyy too honest about my feelings! :o

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NancyL Explorer
NancyL
Posted

HUGS! I know what you mean about just jumping in and trying it though. We have to listen to our bodies, if our bodies are getting sick due to food, then we owe it to ourselves to track down which foods and to never bother our bodies with it again! I hope you get great gluten-free results like I did. It's SO nice not to be a prisoner in my home every first half of the day due to Big "D".

Your Doc reminds me of my GI doc. She was helpful until I wanted to try to help myself and then she became snooty like I wasn't going to blindly trust the "M.D." after her name. She wasn't the one getting no help with daily diarrhea and severe stomach pains! Sometimes you've gotta do, what'ca gotta do. :D

IrishHeart Veteran
IrishHeart
Posted

"I would try gluten-free diet for 6-8 weeks. Then consider biopsy, which is definite diagnosis tool for this problem." <---- MY DOCTOR SAID THIS!!!!!! :(

OMG!!! (Irish shakes her head and heaves a sigh as well)

having seen/heard so much of this idiocy for 3 years (or so I thought) I shouldn't be surprised. But, THAT is just plain ignorance.

My own PC doctor (whose children are celiacs!!!) didn't see what was up with me for 4+ YEARS!!!! I went from doctor to doctor to doctor....until I finally returned to him and TOLD HIM......this is what I have!! Look at my symptoms for the last 12 years. YOU made me go on B-12 back in '07; what was up with that?? The beginning of this 3 year decline into HELL...and he said OMG you are right!...sigh...

I wanted a DEFINITE DIAGNOSIS too. My blood panel was NEG (but I had stopped eating gluten for a month, so who knows?)But I am NOT going back on gluten to see if maybe they can find the right spot to biopsy and tell me what I already know. Plus, My Dad certainly died from complications of this disease and had anemia and had blood transfusions for nearly 9 years. Had stomach issues and h.Pylori infection. They never figured it out. Died of kidney failure. If I KNEW THEN what I know NOW, I would have insisted he be tested.

heck, if I knew then, I would have had ME tested!!

here's the thing...you need to do what's best for you. Don't risk developing more autoimmune disease. Tell your family to get tested. I told mine--they all said...we don't have any stomach issues!! They all have thyroid problems, diabetes, allergies, obesity, arthritis, etc... :blink: .so they are in denial. I talked til I was blue in the face then gave up. I am still too weak and ill and in pain to make them see it. Maybe when I am healed, I'll try it again.

Take care of yourself by doing what you know in your gut (pun intended) what you need to do to feel well. :)

Good luck, hon!!

We're here for you. Don't ever apologize for being emotional. We're allowed. We've had to fight to be heard!!

MsCurious Enthusiast
MsCurious
Posted
  • Author

Great BIG "Group Hug" to all you wonderful Gluten Free-ks !!!

Just when you THINK the roller coaster is slowing down so you can jump off... WHAM !!! Here comes another BIG OLE DROP! ... Then come the screams! LOL And you've heard me scream enough! :P But, I can't tell you how... well I guess you already know just from feeling the support yourselves, ... but I really can't tell you how much your patience, understanding, support, willingness to listen to the same story for the millionth time... means to me ...AND my sanity! :blink::lol:

I guess when the conversations with my doctor slow down it won't be such a wild ride, but for now .. YIKES! You've been my moral support, my sounding board, my touchstone for sanity (scary huh? LOL) and all that stuff. My husband is the sweetest man on earth, but he thinks this has taken over my life. Remember...he's the one with the "iron gut" so he has no concept of what its like to feel like "cr@P" all the time... and its just very very nice to have somewhere to come and share ..and read other stories that make me feel ... not so alone... and not crazy.

That's all I wanted to say.... just a big huge ... THANK YOU to all of ya! :) I know its far from over, but you're all making it a lot easier to get through the maze. Had a bit of a self doubt type day today.... but hangin in there. :blink:

IrishHeart Veteran
IrishHeart
Posted

Great BIG "Group Hug" to all you wonderful Gluten Free-ks !!!

Just when you THINK the roller coaster is slowing down so you can jump off... WHAM !!! Here comes another BIG OLE DROP! ... Then come the screams! LOL And you've heard me scream enough! :P But, I can't tell you how... well I guess you already know just from feeling the support yourselves, ... but I really can't tell you how much your patience, understanding, support, willingness to listen to the same story for the millionth time... means to me ...AND my sanity! :blink::lol:

I guess when the conversations with my doctor slow down it won't be such a wild ride, but for now .. YIKES! You've been my moral support, my sounding board, my touchstone for sanity (scary huh? LOL) and all that stuff. My husband is the sweetest man on earth, but he thinks this has taken over my life. Remember...he's the one with the "iron gut" so he has no concept of what its like to feel like "cr@P" all the time... and its just very very nice to have somewhere to come and share ..and read other stories that make me feel ... not so alone... and not crazy.

That's all I wanted to say.... just a big huge ... THANK YOU to all of ya! :) I know its far from over, but you're all making it a lot easier to get through the maze. Had a bit of a self doubt type day today.... but hangin in there. :blink:

You betcha!! ;) hang tough...you're stronger than you can possibly imagine.

See my signature quote re: courage and sanity. You're going to be all right!

I'm chuckling at the "gluten-free-ks"...I gotta share that one with my cousin.... :D

PS Hubby (my rock and my heartbeat) had iron tummy too. Until he started to have some bowel "issues". But it wasn't gluten, he said, no way...ha! He went gluten-free with me after I was gluten-free one month, thinking he was CCing me somehow. Guess what? He feels better and lost a few lbs. he wanted to get rid of..and no more bowel issues!!... and his allergies are clearing...go figure. :huh: He's all set and I'm slowly plodding along.... :D

ah, we'll get there!!

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