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Danijela

I Give Up

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Hello everyone!!!

Again thank you all for your responses.. they have been very helpful

Gina: that is my real name :) and I asked my DOC about thyroid and he said its been checked umpteen number of times... I researched the thyroid and realize that there is a connection and some of my symptoms are classic of that dyfunction however the doctor ran a TSH and a few other ones i can't seem to remember the names of them right now one was free something or other lol and they were all within limits that was in april. i kind of wonder tho cause i always have throat irritations, my throat often feels raw inside like it rubbing together or something and it hurt to talk... and about 2 months ago it was swollen for about a week i had swabs done for infections, they were all negative.....

thank you all for your support and insight

;)


DANIJELA

"HE WHO ANGERS YOU CONQUERS YOU"

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Sounds like you are becoming a well-informed advocate for yourself :)

I'll look forward to reading about your progress, Danijela!

[ ;) cool name]

Best wishes,

Gina


"Get busy living

or get busy dying."

From: The Shawshank Redemption

--------------------------------------------------------------

gluten-free since Jan 1 '05

Positive response to diet within days, felt 'alive again' within 2 weeks

Feb 22 '05:

Diagnosed "Celiac Sprue, and IBS" by a GI doc, Dr. David Lin of Danville, CA

via blood testing 53 days after I began the gluten-free diet on my own:

Test results at 53 days POST going gluten-free were:

Gliadin AB IgA = 29.9

Since 30+ = positive for Celiac Disease when ingesting gluten, my doc

diagnosed me with Celiac Sprue then and there.

Gliadin AB IgG was 5.6 at that point

-------------------------------------------

Endoscopy with biopsies, AND colonoscopy with biopsies were done,

only to rule out other possible GI problems (especially intestinal

lymphoma) - My doctor told me the results indicated "no current damage

found" - and that as long as I stay gluten-free, I don't need another

biopsy for ten years.

Follow-up blood testing was done about one year later, by the same

Gastro doc, in Nov '05:

Gliadin AB IgA =26, Gliadin AB IgG <1

Blood testing done again by him, 5 months later (March '06)

He then told me my tests results were back to normal, and "Keep up the

good work! You can't argue with success!" :-)

I now see him one time per year for routine testing to make sure I am

staying gluten-free.

------------------------------------------------------------------------------------------

ADDTIONALLY:

I was also diagnosed as positive for antibodies and autoimmune

response to gliadin by Enterolab, via stool specimen taken 56 days

gluten-free

and I have one of the two genes that 'cause' Celiac Disease:

"HLA-DQ8," via Enterolabs cheek cell test kit

---------------------------------------------------------------------

I began a COMPLETE 'Gluten-free Casein-free' diet in Nov '05, due to:

"positive" for casein antibodies from Enterolab (in Feb '05)

and

"positive" for casein IgG (Elisa) via York Labs' finger-prick blood

test, Sept '05

and continued 'stomach pains,' although nothing compared to before

going gluten-free....

UPDATE: ALL remaining symptoms disappeared within weeks of going gluten-free&CF!

**********************

My PAST illnesses I believe are attributable to Untreated Celiac Disease:

Recurrent ear and throat infections in childhood

Frequent childhood stomach aches, underweight, picky eater

Tooth enamel problems/excessive cavities in childhood

Diagnosed in 20's with non-allergic rhinitis

Two spontaneous abortions (childless)

IBS diagnosis at age 28 (all better post going gluten-free and casein-free)

["Horrible" digestive problems from ages 32-47 - excess gas,

diarrhea gone post gluten-free!]

Reflux diagnosis at age 35 ('reflux' gone post gluten-free)

ADHD diagnosis at age 38 and at age 48 (not as bad with Gluten-free Casein-free diet)

Broke elbow in 2 places, age 39

Osteopenia diagnosed at age 44 (bone scan revealed thinning of spine -

taking Calcium and Vit D now)

Fibromyalgia diagnosis at age 40 (fatigue and pain all gone post gluten-free!)

Minor depression with anxiety diagnosed at age 42 (taking Paxil)

Skin cancer - squamous at age 43 and pre-melanoma at age 45

Adult acne (this, too, went away, but only after going dairy-free)

Topical dermatitis (so bad I needed steroid shots) diagnosed at age 46

(That's gone now, too!)

Excessive bruising of skin began at age 45:

I was told by derm doc AND family physician "That's just thin, aging

skin, nothing you can do about that" (GUESS WHAT?! ...NO unusual

bruising POST going gluten-free! I can now wear skirts and shorts

again!)

SO many years of being sick...

Hopefully, others will benefit from Science, and the increasing media

attention being given to Celiac Disease and gluten-based illnesses,

and will not have to go through what I, and others on here, have had

to go through.

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Hey!

well I'm back from the GI's office and I got the dreaded diagnosis I walked in and he said "Danijela your Barium Enema can back completly normal you have Irritable bowel syndrome are you familiar with this?

I cringed when he said that....

I asked him about getting tested for food intolerances and he said he didn't do that and I would have to go to an allergist...

so my question is: is an intolerance and an allergy the same thing? i didn't think so....

I gave my gp the list of antibodies that I should have tested that I got off of this site and he said he was going to look into it (i'm not sure if he knew what it was)

I haven't heard back yet and the GI said he doesn't deal with those sort of issues....

so i don't know what to do next I dont' want to go gluten-free until I find out if their going to run the tests of not to prevent a false negative...

The news station we have here ran a little 5 min special on celiac disease it was just a specialist talking he said that celiac disease was a hereditary disease that one gets when they are a baby and they also suffer from extreme weight loss...so now my family is convinced this is all in my head because i'm a few days short of 22 no one in my family had celiac disease and I have gained weight ....

so i don't know now what to do??????????


DANIJELA

"HE WHO ANGERS YOU CONQUERS YOU"

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Hey!

well I'm back from the GI's office and I got the dreaded diagnosis I walked in and he said "Danijela your Barium Enema can back completly normal you have Irritable bowel syndrome are you familiar with this?

I cringed when he said that....

I asked him about getting tested for food intolerances and he said he didn't do that and I would have to go to an allergist...

so my question is: is an intolerance and an allergy the same thing? i didn't think so....

I gave my gp the list of antibodies that I should have tested that I got off of this site and he said he was going to look into it (i'm not sure if he knew what it was)

I haven't heard back yet and the GI said he doesn't deal with those sort of issues....

so i don't know what to do next I dont' want to go gluten-free until I find out if their going to run the tests of not to prevent a false negative...

The news station we have here ran a little 5 min special on celiac disease it was just a specialist talking he said that celiac disease was a hereditary  disease that one gets when they are a baby and they also suffer from extreme weight loss...so now my family is convinced this is all in my head because i'm  a few days short of 22 no one in my family had celiac disease and I have gained weight ....

so i don't know now what to do??????????

<{POST_SNAPBACK}>

I'm so sorry to hear that you haven't had a def answer yet. IBS is a syndrom based on ruling out other things. So far the celiac disease hasn't been ruled out so IBS can't be definitly ruled in. And tell your family (or let them read this) that NO ONE ELSE IN MY FAMILY HAS celiac disease!!! I'm the only one! and I didn't develop it until I was in my mid-30's. The FIL of our company's audit didn't develop his until he was in his 60's, and he's the only one in his family. Both of our cases it was stress that triggered the celiac disease to fully manifest itself. What you can do is get a simple dna test (don't remember who, check older threads) that can tell you if you have the marker for celiac disease. I haven't done it, but am very tempted to. And allergy and autoimmune are different things. But related I think. Anyhow, in allergies the body reacts to benign things as invaders and launches an attack (histamines) to flush the invader out of hthe system. Autoimmune disorders are where the body attacks itself (this is oversimplification, I know). Think arthritis where the body attacks the joints. Only in celiac disease it's attacking the lining of your small intestine.

I can understand your dilemma of wanting to stay on gluten until all the testing is done, but then again, the diet challenge is a valid dx tool.

For what it's worth, I don't believe you are a hypochondriac. Your body is telling you something isn't working right; you have to listen to it to make things better and maintain your health. Don't give up!


gluten-free since Oct 1996

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I asked him about getting tested for food intolerances and he said he didn't do that and I would have to go to an allergist...

so my question is: is an intolerance and an allergy the same thing? i didn't think so....

What you do is go to the allergist and send your doctor flowers to thank him for suggesting you go.  After years of misdiagnosis my PT nagged me into going. That was the answer. The allergist will skin test you for actual allergies and then you will go on a real elimination diet. This is not just cutting something out and regular doctors and GI will not help with this

I gave my gp the list of antibodies that I should have tested that I got off of this site and he said he was going to look into it (i'm not sure if he knew what it was)

I haven't heard back yet and the GI said he doesn't deal with those sort of issues....

First you find a new GP, he should have just run the tests, not just give you an 'I'll look into it' . Go back in his office and sit there till he gives you the lab slips. You could also get the gene typing done to see if you carry the gene, or ask for a fecal antibody test which is much more reliable than the blood tests.

so i don't know what to do next I dont' want to go gluten-free until I find out if their going to run the tests of not to prevent a false negative...

Or you could just do the diet and let your body tell you.

The news station we have here ran a little 5 min special on celiac disease it was just a specialist talking he said that celiac disease was a hereditary  disease that one gets when they are a baby and they also suffer from extreme weight loss...so now my family is convinced this is all in my head because i'm  a few days short of 22 no one in my family had celiac disease and I have gained weight ....

This is so false it is scary and these outdated beliefs cause many of us to suffer needlessly in this country. At least he got the heradity part right. There is a reason why it takes an average of 10 years to be diagnosed in this country as opposed to 2 to 3 months in many others. Misinformation like this doesn't help. Many of us are diagnosed in adulthood and many of us gain weight not lose it.

so i don't know now what to do??????????

What you do is go on the diet and see if it helps. That is the true test.

<{POST_SNAPBACK}>


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hi!

OK...so, you have been told to get a new GP...I agree IF you call and insist that he give you a lab requisition for "A FULL Celiac Disease Blood Panel", and he says he won't -

If he won't, before seeing a new doc, ask his/her receptionist if the doc orders those tests, if requested to by a patient, before wasting your time and money on a visit...

You probably know some of the following:

Once you get those tests done, you will learn if you have high antibodies to gliadin...

If you do not, you will NOT be biopsied...

So, try to get those blood tests done ASAP and get the results ASAP - to get on with the gluten-free diet trial ASAP....

If you get biopsied and it comes back negative, you need to try a gluten-free diet anyway, in case you have gluten intolerance...

If you will not be biopsied, you can also then go gluten-free, to see if the gluten-free diet relieves your symptoms.

If going gluten-free does help you, it means you have some intolerance...and you may even have celiac disease, but for some reason are one of those with celiac disease with a false negative blood test...

If you do respond positively to a gluten-free diet...in my opinion-at this point, based on what I have gone through- I say...STAY gluten-free and forget about trying to get 'an official' diagnosis of Celiac Disease.

If going gluten-free doesn't get rid of all of your symptoms, I would then look into reading up on Leaky Gut Syndrome and how to heal your gut....if trying probiotics and enzymes and no sugar and no dairy, along with no gluten for a month or so doesn't help you, then you may want to get further food intolerance tests done...

to find 'the culprits'...it can take up to a year, though, to heal a bad leaky gut...

I am currently learning all about leaky gut syndrome (LGS)...in hopes to keep my only food problem down to gluten, because unless my gut heals completely, other foods can likely become a problem, for over time...casein seems to have become one already...i hope to be able to reverse it and use dairy, eventually, on a rotational basis, if possible...or rarely, at least...

[An aside here - I now understand why my mother has had to eliminate food after food after food over her lifetime...she probably has had a leaky gut, too, and just kept developing new intolerances. She did not test positive for celiac disease, but the gene I have is most likely found on my dad's side of my ethnic make-up...]

Anyway...this is not an easy road...the road to optimum digestive health, but IF you do learn that celiac disease or 'simple' gluten intolerance is a major cause of your problems, you WILL feel a lot better after going gluten-free...and it will seem easier then, to solve any lingering issues....

I hope that you can get those bloods tests ASAP - a normal GP, AND a normal GI knows what they are - you seem to have gotten a double-whammy of stupidity...just a thought, but perhaps your GYN can direct you to decent GP and GI docs? You never know until you ask...

GOOD LUCK!

Gina


"Get busy living

or get busy dying."

From: The Shawshank Redemption

--------------------------------------------------------------

gluten-free since Jan 1 '05

Positive response to diet within days, felt 'alive again' within 2 weeks

Feb 22 '05:

Diagnosed "Celiac Sprue, and IBS" by a GI doc, Dr. David Lin of Danville, CA

via blood testing 53 days after I began the gluten-free diet on my own:

Test results at 53 days POST going gluten-free were:

Gliadin AB IgA = 29.9

Since 30+ = positive for Celiac Disease when ingesting gluten, my doc

diagnosed me with Celiac Sprue then and there.

Gliadin AB IgG was 5.6 at that point

-------------------------------------------

Endoscopy with biopsies, AND colonoscopy with biopsies were done,

only to rule out other possible GI problems (especially intestinal

lymphoma) - My doctor told me the results indicated "no current damage

found" - and that as long as I stay gluten-free, I don't need another

biopsy for ten years.

Follow-up blood testing was done about one year later, by the same

Gastro doc, in Nov '05:

Gliadin AB IgA =26, Gliadin AB IgG <1

Blood testing done again by him, 5 months later (March '06)

He then told me my tests results were back to normal, and "Keep up the

good work! You can't argue with success!" :-)

I now see him one time per year for routine testing to make sure I am

staying gluten-free.

------------------------------------------------------------------------------------------

ADDTIONALLY:

I was also diagnosed as positive for antibodies and autoimmune

response to gliadin by Enterolab, via stool specimen taken 56 days

gluten-free

and I have one of the two genes that 'cause' Celiac Disease:

"HLA-DQ8," via Enterolabs cheek cell test kit

---------------------------------------------------------------------

I began a COMPLETE 'Gluten-free Casein-free' diet in Nov '05, due to:

"positive" for casein antibodies from Enterolab (in Feb '05)

and

"positive" for casein IgG (Elisa) via York Labs' finger-prick blood

test, Sept '05

and continued 'stomach pains,' although nothing compared to before

going gluten-free....

UPDATE: ALL remaining symptoms disappeared within weeks of going gluten-free&CF!

**********************

My PAST illnesses I believe are attributable to Untreated Celiac Disease:

Recurrent ear and throat infections in childhood

Frequent childhood stomach aches, underweight, picky eater

Tooth enamel problems/excessive cavities in childhood

Diagnosed in 20's with non-allergic rhinitis

Two spontaneous abortions (childless)

IBS diagnosis at age 28 (all better post going gluten-free and casein-free)

["Horrible" digestive problems from ages 32-47 - excess gas,

diarrhea gone post gluten-free!]

Reflux diagnosis at age 35 ('reflux' gone post gluten-free)

ADHD diagnosis at age 38 and at age 48 (not as bad with Gluten-free Casein-free diet)

Broke elbow in 2 places, age 39

Osteopenia diagnosed at age 44 (bone scan revealed thinning of spine -

taking Calcium and Vit D now)

Fibromyalgia diagnosis at age 40 (fatigue and pain all gone post gluten-free!)

Minor depression with anxiety diagnosed at age 42 (taking Paxil)

Skin cancer - squamous at age 43 and pre-melanoma at age 45

Adult acne (this, too, went away, but only after going dairy-free)

Topical dermatitis (so bad I needed steroid shots) diagnosed at age 46

(That's gone now, too!)

Excessive bruising of skin began at age 45:

I was told by derm doc AND family physician "That's just thin, aging

skin, nothing you can do about that" (GUESS WHAT?! ...NO unusual

bruising POST going gluten-free! I can now wear skirts and shorts

again!)

SO many years of being sick...

Hopefully, others will benefit from Science, and the increasing media

attention being given to Celiac Disease and gluten-based illnesses,

and will not have to go through what I, and others on here, have had

to go through.

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Hey everyone

Thankyou soooo much for your help and support

I honestly don't know where i'd be without you guys

I think i'm just going to go on the diet starting tomorrow I can't keep doing this

Is shortness of breath a common thing with this... after I eat my stomach swells up and is harder than usual and I get short of breath

I asked the Doc about it and he said its from being overweight and out of shape

I told him it was hard for me to believe i've been a dancer for ten years

anyways thanks again

:)


DANIJELA

"HE WHO ANGERS YOU CONQUERS YOU"

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Hello,

There ARE tests you can do regarding intolerances!!

Years ago, I was "diagnosed" with Irritable Bowel Syndrome (it's how I handle stress?). However, two years ago, my new GP suggested that I be tested for several intolerances: lactose, fructose, and sorbital.

It was not a difficult process at all. However, since you have to be tested for each possible intolerance separately, it means going back to the lab several times (which was worth it for me). I had to limit my food intake the day before (ex. eat rice and broiled chicken). At the lab the next morning (without breakfast), I had to drink a solution of lactose (or fructose or sorbital), and then my symptoms were monitored over the next 3-4 hours. The really cool thing was they also did a "breathalyser". Apparently, if my intestines were not absorbing the various sugars, the natural bacteria in my gut have a field-day!! They eat the sugars, and breath out hydrogen gas (thus, explaining the bloating, etc). Well, that hydrogen gas also leaves your body via your lungs and breathe - the breathalyser was analysed for hydrogen gas content.

The results showed that I am "off the scale" for those three sugars. I've also personally included sucrose (table sugar that breaks up into fructose and glucose in your body) and maltitol (another artificial sweetner).

Unfortunately, after several months of feeling somewhat better, I'm back to experiencing a lot of abdominal pain, gas, etc.... So, I'm in the process of being tested for gluten intolerance and I had blood tests done this past week. I should hear back in a couple of weeks, but my doctor did say that it "could" just be IBS. However, after reading all your letters, I'm encouraged to try to eliminate gluten from my diet, regardless of the test results, and see how I feel.

Thank you.

michele

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