A Question From A Rookie

[conniebky]

So tell all of us rookies, all you veterans out there, how long did it take you to figure out what was wrong?

How many doctors did you go through?

How many tests did you have?

How frustrated were you?

Did you think they'd never ever figure it out?

Was it a really bad roller coaster trip?

Were there times you got just downright depressed about it?

Is life better now that you got answers?

[Jestgar]

So tell all of us rookies, all you veterans out there, how long did it take you to figure out what was wrong?

How many doctors did you go through?

How many tests did you have?

How frustrated were you?

Did you think they'd never ever figure it out?

Was it a really bad roller coaster trip?

Were there times you got just downright depressed about it?

Is life better now that you got answers?

several

boatloads

very

nope

not too bad, mostly

of course

still don't have all the answers

you may never have all the answers....

[ravenwoodglass]

So tell all of us rookies, all you veterans out there, how long did it take you to figure out what was wrong?

40 years

How many doctors did you go through?

Too many to count including rheumatologist, neurologist, GI's, psychiatrists, dermatologists Ob/GYN etc.....

How many tests did you have?

Again too many to count, blood tests, spinal taps, MRIs, CT scans, Xrays, colonoscopies, electromylograms, EEG's, pulmonary function tests, heart stress tests, they sure did make plenty of money off me....

How frustrated were you?

If I hadn't had children I would have killed myself 5 years before I was diagnosed.

Did you think they'd never ever figure it out?

Yes

Was it a really bad roller coaster trip?

Yes

Were there times you got just downright depressed about it?

Depression was one of my symptoms

Is life better now that you got answers?

Is it ever!!!!!

No one should have to go through what I went through, the reason why I am here posting so often.

[mushroom]

How many doctors did you go through

Couldn't count

How many tests did you have?

NONE!! Just recommendations to see a psychiatrist.

How frustrated were you?

Very

Did you think they'd never ever figure it out?

Yes

Was it a really bad roller coaster trip?

Not really, pretty constant, except for the fainting in embarrassing places (usually restaurants)

Were there times you got just downright depressed about it?

Yes

Is life better now that you got answers?

Still working on the answers - think it's probably lectins

[conniebky]

How many doctors did you go through

Couldn't count

How many tests did you have?

NONE!! Just recommendations to see a psychiatrist.

How frustrated were you?

Very

Did you think they'd never ever figure it out?

Yes

Was it a really bad roller coaster trip?

Not really, pretty constant, except for the fainting in embarrassing places (usually restaurants)

You had fainting spells? Can you please post some more about that? Also, what is nightshade?

[jerseyangel]

How many doctors did you go through? Many. I don't have an exact number, but over the course of 20 years between the ages of 29 and 49, I saw several Family Doctors, Internists, Ear, Nose & Throat Doctors, Allergists, and finally when I was at the end of my rope, a Kinesiologist and an Acupuncturist.

How many tests did you have? CT scans, cardiac workup (stress echo/Holter monitor), allergy skin and blood testing, hysteroscopy, colonoscopy, upper and lower abdominal ultrasounds, lots of bloodwork, and finally an endoscopy.

How frustrated were you? Very--for years I managed to live with the varying symptoms. One of those family doctors actually told me I would have to "live with it"....when doctors can't come up with a reason why, you begin to doubt yourself and try and "suck it up".

Did you think they'd never ever figure it out? For a long time, yes.

Was it a really bad roller coaster trip? For a good many years, it wasn't so dramatic. Looking back on it, I can see that I slowly withdrew from most everything. I stayed home with my kids, so it was a bit easier and any energy or good days went to my boys. It wasn't until my symptoms kicked into overdrive after a case of the flu in 2003 that I vowed to figure out what was wrong with me.

Were there times you got just downright depressed about it? Oh yes.

Is life better now that you got answers? It is. I still have unexplained bad days and am ridiculously sensitive to cross contamination. I'm just now feeling better from a 3 week long reaction that occurred because I broke my own rule of introducing new things one at a time (still don't know exactly what did me in). I was not happy at all to revisit the tingling, numbness, overwhelming anxiety and depression, dizziness, and migraine. For me, the stomach issues now clear up a lot quicker than the neuro/emotional ones--completely the opposite of when I was first gluten-free.

[mushroom]

You had fainting spells? Can you please post some more about that? Also, what is nightshade?

They were not related to blood sugar, Connie. They came (come) about because of such intense bloating placing pressure on the vagus nerve (they call it vasovagal syncrope). If I am unable to release the bloat I pass out. I used to think it was corn that caused it, now I find that it is caused by all lectins which are specific components of some proteins. Wheat gliadin contains lectins. So do nightshades, which are the family which includes potatoes, tomatoes, peppers and eggplant. So does corn, soy, citrus. These are all high lectin foods. There are lectins all over the place but it is the high concentrations that get me.

[glutenfr3309]

So tell all of us rookies, all you veterans out there, how long did it take you to figure out what was wrong?

How many doctors did you go through?

How many tests did you have?

How frustrated were you?

Did you think they'd never ever figure it out?

Was it a really bad roller coaster trip?

Were there times you got just downright depressed about it?

Is life better now that you got answers?

i guess i was one of the lucky ones...i'm 28 and always remembered having stomach issues growing up. i would say the symptoms really progressed and became worse in the last year.

mentioned to my gyno a year ago about my stomach issues- she suggested maybe it was caused by dairy....that got the wheels turning in my head. i saw a GP for a physical mentioned it to her. didn't get anywhere. went to an internal medicine doc who recommended that i go to a GI doctor. saw the GI doctor who immediately wanted to do the endoscopy to rule out ulcers or anything else. everything came back negative although there was inflammation. so almost exactly year after i started 'figuring' things out i was gluten-free.

had the blood work and upper endoscopy.

i def doubted myself at times...thought maybe i was getting better. i kinda waited a few months to see the GI doctor and at one point i just felt so awful i had enough. there were too many days where i felt like i was run over by a truck.

my GI doctor was experienced with diagnosing celiac disease so even though i wasn't considered celiac he told me to continue with the gluten-free diet.

i have a history of depression but i def felt myself becoming depressed. there were so many days that i stayed in bed because i didn't feel well. it has a huge impact on your daily life and after a while the awfulness becomes the norm. now when i accidentally get glutened i can't believe i let myself suffer the way i did!

life is SO much better. def not as irritable- i'm sure the bf appreciates that! i can actually FUNCTION! i don't feel exhausted on a daily basis and i can now wake up without feeling the pain/inflammation in my intestines! many people have told me how much healthier i look- my skin tone is nicer and body isn't bloated like it used to be!

[bluebonnet]

So tell all of us rookies, all you veterans out there, how long did it take you to figure out what was wrong?

How many doctors did you go through?

How many tests did you have?

How frustrated were you?

Did you think they'd never ever figure it out?

Was it a really bad roller coaster trip?

Were there times you got just downright depressed about it?

Is life better now that you got answers?

13 years of MANY different doctors (including many "specialists" of sorts) with tests for my heart, mri's, ct's, blood work (funny never tested celiac though).

yes, i was very frustrated and scared for my health for 13 years ... i had 1 doctor tell me i had "ibs and perhaps a touch of hypocondria". and to think he got $$ from me makes me angry!!

i didn't think they'd ever figure it out ... so i helped them and because i asked them to test me for celiac we finally got an explanation for the years of symptoms and pain. (this was fairly recent ... like dec 09).

of course i got depressed about it at times but i have an amazing husband, kids, family and friends though and super supportive so that made this more bearable to deal with.

life is definitely better with answers. feeling better (still have a loooong way to go) but the validation its NOT all in my head and knowing what i can do to heal is comforting and i'm grateful.

you will heal, things will improve ... just hang in there! oh, and try not to dwell on the years and $$$ wasted ... i have to remind myself of that all the time.

[conniebky]

These answers, "testimonials", if you will... are very helpful to me and I'm sure to others reading them as well.

thank you all.

[sb2178]

So tell all of us rookies, all you veterans out there, how long did it take you to figure out what was wrong?

Not a veteran at all, but symptoms clearly started in Feb and may go back as far as 2004.

How many doctors did you go through?

3

How many tests did you have?

3 (celiac-specific plus goodness know how many other blood tests...)

How frustrated were you?

Varied-- 5 on a scale of 1-10

Did you think they'd never ever figure it out?

yup.

Was it a really bad roller coaster trip?

no... just irritating as heck.

Were there times you got just downright depressed about it?

definitely, but more so about the loss of physical ability to literally live life.

Is life better now that you got answers?

Yes~ can run, bike, dance, and have 95% of my symptoms gone. (5 weeks gluten-free)

[Skylark]

So tell all of us rookies, all you veterans out there, how long did it take you to figure out what was wrong?

How many doctors did you go through?

How many tests did you have?

How frustrated were you?

Did you think they'd never ever figure it out?

Was it a really bad roller coaster trip?

Were there times you got just downright depressed about it?

Is life better now that you got answers?

Many doctors. At least ten missed my celiac disease, including allergists, psychiatrists, general practitioners, osteopaths, and a lovely lady who practices TCM and acupuncture that I visited when I was REALLY at the end of my rope.

Tested for celiac as an infant, negative. Fatigue diagnosed as depression. Separate diagnoses of gastritis, IBS, Hashimoto's thyroiditis. Never tested for GI issues, as I'd been living with them all my life. Took a lot of Bentyl as a child, was told my stomach aches were "psychosomatic" and treated by a child psychologist.

So frustrated I went on a lamb/rice/salad elimination diet for two weeks.

They didn't figure it out. I had to do that myself.

I'd say eight years of depression/fatigue and then seven years of SSRI-caused bipolar illness was a bad roller coaster trip.

Depression was one of my symptoms.

Better doesn't even begin to describe it. My life is transformed. No psych problems (unless I get glutened), fairly normal energy level, no stomach aches, no more diarrhea, canker sores gone, nails normal, hair strong.

[missladyj]

Thank you. This is just what I needed to read.