Searching For Answers

[Michi8]

Hello,

I'm a new member here...have been reading a bit over the last while...and decided to join up.

I'm currently going through some testing to confirm what, if anything, is going on with my health. I've had allergies since childhood, and in my teenage years started to develop more allergies, stomach problems (given the label of IBS), lactose intolerance, eczema, allergy-induced asthma. Since having kids I'm now constantly exhausted (regardless of amount of sleep), allergic to different foods, have skin issues, losing hair, am contstantly cold, have numbness in fingers and toes, etc.

Just got back from my first visit to the GI and am feeling so-so about it. While it took her no time, based on mine and my families' histories, to decide to book a gastroscopy (end of November!) and colonoscopy (March 2007! yikes!), she unforunately has a horrible bedside manner. I hate leaving a dr's office feeling insignificant and like a bother.

The dermatologist was about the same. He did a biopsy of a skin lesion to test for DH, but took a sample of the lesion itself...of course the test came back negative. I don't want to go back to him to ask for another test, because I just can't stand his self-important know-it-all manner (including his opinion that the only treatment for DH is Dapsone, and that the gluten-free diet is just too hard to bother with.) The next time I see him will be after my patch tests...I'll probably go to a different doctor after that, if I go to another dermatologist at all.

I'm hoping, though, that the gastroscopy will give us some answers. Celiac is a logical possibility to me, given the GI and allergy history of my extended family. My brothers have some serious GI issues especially, but they're not interested in further testing.

I know I'm not the only one experiencing trouble with doctors. I appreciate being able to vent here. Hopefully the testing will provide the answers I'm looking for.

Michelle

[CarlaB]

Sounds like it could be celiac. Be sure you are consuming gluten until the testing is completed (I didn't), and be sure that during the endoscopy they take enough biopsies (my doc didn't) and that they get sent to a competent lab that can find the damage (mine didn't). I'll never know for sure whether I really have celiac, or just gluten intolerance, but it doesn't matter much, the cure is the same!

Welcome to the board! I'm sure others will tell you how to go about getting things done the right way since I only have experience to pass on with things being done wrong!

[queenofhearts]

Welcome! This is a great place to come when you are first finding out about Celiac. There's more information here than I've found ANYWHERE else, not to mention moral support! We've all had our share of knuckleheaded docs, so you'll get lots of sympathy here & some good coping mechanisms & stategies/tactics.

When you're ready to go gluten free, be sure to check out Nini's Newbie Kit.

It's on her website: Open Original Shared Link

Leah

[Michi8]

Thanks, Carla.

I'm hopeful that this doctor will to the testing correctly. Celiac disease is one of her areas of interest, and she's associated with the University research here too. If the tests come out negative, I'll continue to go through the list of possilibities...need to rule everything out.

I'm curious too, if my kids have celiac. My eldest has chronic, serious consitpation that started as a baby when he was a few months into solid foods. My middle child is thin as a rail and is a picky, picky eater. And my youngest (daughter) has the worst eczema I've ever seen. It flares up on every inch of her body. The determatologist says, "it's not related to allergies, she'll just have deal with it for the rest of her life." Perhaps finding out more about my own health will give clues to what's going on with the kids too.

[justjane]

michelle,

welcome to the board! we are glad you're here. i hope you can get all the answers you're looking for. to me it sounds like you might have celiac, so just be patient! i agree with Carla - eat your gluten and make sure doctors know what they are doing!

carla, i heard that the hospitals are supposed to have your biopsies on record for 7 years after they were taken. is there a way you could have them sent to another qualified specialist and have them looked at again? just a thought, this is what i'm thinking about doing.

it is no fun not having the doctor care about you.... i'm sorry about that. maybe she was having a rough day. next time will be better, hopefully! good luck.

-justjane

[Michi8]

Thanks for the link, Leah! I've already found this website so helpful. I also found the Celiac book by Dr. Peter Green to be a good place to get info...it helped encourage me to finally get some testing done...I'm tired of feeling sick all the time!

Michelle

[CarlaB]

michelle,

welcome to the board! we are glad you're here. i hope you can get all the answers you're looking for. to me it sounds like you might have celiac, so just be patient! i agree with Carla - eat your gluten and make sure doctors know what they are doing!

carla, i heard that the hospitals are supposed to have your biopsies on record for 7 years after they were taken. is there a way you could have them sent to another qualified specialist and have them looked at again? just a thought, this is what i'm thinking about doing.

it is no fun not having the doctor care about you.... i'm sorry about that. maybe she was having a rough day. next time will be better, hopefully! good luck.

-justjane

I just read that here recently, too. I was tested by Enterolab, so I know for sure I have a gluten-sensitivity. Also, my dietary response has been good. I don't really need to know more than that, and I actually feel somewhat lucky that I found out and don't have an official diagnosis to follow me around in light of the discussion recently about people having trouble with insurance because of a pre-existing condition, which I do not officially have. Thanks for the suggestion though. If I hadn't already used Enterolab, I might do that.

[Michi8]

michelle,

welcome to the board! we are glad you're here. i hope you can get all the answers you're looking for. to me it sounds like you might have celiac, so just be patient! i agree with Carla - eat your gluten and make sure doctors know what they are doing!

carla, i heard that the hospitals are supposed to have your biopsies on record for 7 years after they were taken. is there a way you could have them sent to another qualified specialist and have them looked at again? just a thought, this is what i'm thinking about doing.

it is no fun not having the doctor care about you.... i'm sorry about that. maybe she was having a rough day. next time will be better, hopefully! good luck.

-justjane

Thanks, justjane! Naw, I don't think she was having a rough day. I think she's just used to working on autopilot...can only spare 10 minutes per visit you know! She did soften her tone a little bit when it looked like I was on the verge of tears (I hate when I lose composure!)...maybe she'll treat the rest of today's patients a little better.

I just read that here recently, too. I was tested by Enterolab, so I know for sure I have a gluten-sensitivity. Also, my dietary response has been good. I don't really need to know more than that, and I actually feel somewhat lucky that I found out and don't have an official diagnosis to follow me around in light of the discussion recently about people having trouble with insurance because of a pre-existing condition, which I do not officially have. Thanks for the suggestion though. If I hadn't already used Enterolab, I might do that.

I've been curious about Enterolab, but hesitant to try their testing since I'm in Canada. As well, if I truly do have celiac, then there is benefit in having the official diagnosis in that there is a tax allowance for the diet (not much, I know) only if you have the diagnosis. Health insurance isn't as much a worry here...just wait times for testing.

[Alexander]

Hello,

I'm a new member here...have been reading a bit over the last while...and decided to join up.

I'm currently going through some testing to confirm what, if anything, is going on with my health. I've had allergies since childhood, and in my teenage years started to develop more allergies, stomach problems (given the label of IBS), lactose intolerance, eczema, allergy-induced asthma. Since having kids I'm now constantly exhausted (regardless of amount of sleep), allergic to different foods, have skin issues, losing hair, am contstantly cold, have numbness in fingers and toes, etc.

Just got back from my first visit to the GI and am feeling so-so about it. While it took her no time, based on mine and my families' histories, to decide to book a gastroscopy (end of November!) and colonoscopy (March 2007! yikes!), she unforunately has a horrible bedside manner. I hate leaving a dr's office feeling insignificant and like a bother.

The dermatologist was about the same. He did a biopsy of a skin lesion to test for DH, but took a sample of the lesion itself...of course the test came back negative. I don't want to go back to him to ask for another test, because I just can't stand his self-important know-it-all manner (including his opinion that the only treatment for DH is Dapsone, and that the gluten-free diet is just too hard to bother with.) The next time I see him will be after my patch tests...I'll probably go to a different doctor after that, if I go to another dermatologist at all.

I'm hoping, though, that the gastroscopy will give us some answers. Celiac is a logical possibility to me, given the GI and allergy history of my extended family. My brothers have some serious GI issues especially, but they're not interested in further testing.

I know I'm not the only one experiencing trouble with doctors. I appreciate being able to vent here. Hopefully the testing will provide the answers I'm looking for.

Michelle

Hey Michelle

Im new on here too, just joined the other day as far as doctors go i know exactly how you feel.

Im definalty sure that someone in this forum will be able to help you...

Good Luck i hope you find the answer your looking for...

Alex

[marciab]

Hi Michele

Welcome to the board.

I wanted to mention that your symptoms ( exhaustion, numbness ) could also be from anemia. Iron or B12 or both. These are common deficiencies in celiacs. It is something you could treat now and not wait until you have been tested for celiac.

I was just diagnosed with both of these 6 weeks ago. And wish I had known sooner.

Marcia

[Michi8]

Hey Michelle

Im new on here too, just joined the other day as far as doctors go i know exactly how you feel.

Im definalty sure that someone in this forum will be able to help you...

Good Luck i hope you find the answer your looking for...

Alex

Hi Alex,

Seems many people go through a lot of doctors on the way to diagnosis. Still a lot of misinformation out there too. Amazing how this disease can go from a rate of 1 in 3000 (still quoted by a lot of medical sources) to closer to 1 in 100.

Michelle

[Michi8]

Hi Michele

Welcome to the board.

I wanted to mention that your symptoms ( exhaustion, numbness ) could also be from anemia. Iron or B12 or both. These are common deficiencies in celiacs. It is something you could treat now and not wait until you have been tested for celiac.

I was just diagnosed with both of these 6 weeks ago. And wish I had known sooner.

Marcia

Hi Marcia,

Thanks for the tip. We've done blood tests, a barium swallow and an ultrasound. Checking for everything including diabetes, thyroid disease, celiac. So far everything is showing up negative (not surprised!) Don't know if lupus has been tested for. The GI dr wants me to go in for a bone density test as well since I avoid most dairy due to lactose intolerance.

Michelle