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ItchyMeredith

Emotional Vent

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I feel like I am one of the lucky ones because I got my diagnosis only 2 years after the symptoms started. I also feel lucky that my biggest issue (I think) is this rash. I am so happy to have caught celiac disease before I became truly and dangerously ill like so many of you have.

It is amazing that I even got the diagnosis


DH positive skin biopsy June 2007

Blood test positive July 2007

Gluten Free- since 6-23-07

Vegetarian since 1991

Stay-at-home Mommy to:

Kellen 2-05

Cameron 10-06

Scarlett 5-09

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Celiac.com Sponsor (A8):

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Feel free to vent away! You are indeed very fortunate to have found the root cause of your issues so "soon" (two years)! Thank goodness that your baby is fine and that you finally did go to see that second dermatologist; your previous one was totally irresponsible, to say the least...


Gluten-free since 10/05 - Positive dietary response with Doctor's validation! - Debilitating migraines, constant dizziness and lightheadedness gone; anxiety & panic attacks, depression, agoraphobia and extreme exhaustion considerably lessoned

Dairy/Casein Intolerant

Soy, Cabbage, Sugar, Peanut, Shellfish, Caffeine, Egg, Potato and Tomato allergies / intolerances

Sporadic reactions to: Poultry

Avoiding all preservatives and additives

Also Multiple Chemical/Environmental Sensitivities

Mitral Valve Prolapse

Pulmonary Embolism - 1999

Dance, when you're broken open.

Dance, if you've torn the bandage off.

Dance in the middle of fighting.

Dance in your blood.

Dance, when you are perfectly free.

RUMI

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I would encourage you to call your first doctor on her negligence. (You may want to avoid that word, as it has legal connotations, however.) Doctors need feedback as well, good and bad.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Ummm, yeah, that sounds like negligence to me, too. It's one thing for a doctor to not know enough about the disease to think about it and be able to diagnose based on non-standard symptoms and a negative "gold-standard" biopsy, but it's quite another to have a diagnosis written in your records and not tell you. It is unacceptable for a doctor to not tell you if you have a disease.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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How frustrating! I've had some issues with doctors concerning Celiac also...my primary care doctor just kept shoving acid blockers down my throat, not really doing anything to find out what was wrong. When those failed he sent me to a GI doctor. The worst GI doc EVER to be exact. He sat me on the table, poked my tummy with a finger, asked if I was pregnant, then said "There's nothing wrong with you." and sent me home. So I FINALLY got with a good GI doc and that man is a miracle! :D But anywho...that was my rant and I know how it feels to be SO FRUSTRATED with your doctors!

Erin from Arizona

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Meredith:

My husband went thru 3 gastros and no less than 5 Internists/GP's before gastro #4 diagnosed the disease. This took 27 years of adult-onset illness. One GASTRO told him he needed psychological help because the illness was all in his mind. This was in 1994. The years were grueling emotionally and the illness has racked and destroyed his body, not to mention what it's done to him mentally.

The word "diagnose" is interesting. It's root word is "gnosis" in Greek meaning "knowledge." "Dia" is greek meaning "through, between". The word means to get the knowledge by taking the facts through or between the symptoms and information. May we all have doctors who truly know the meaning of this word.

I cheer for those who get diagnosed quickly go gluten-free and retain their health.

To your health - Deb


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I would encourage you to call your first doctor on her negligence. (You may want to avoid that word, as it has legal connotations, however.) Doctors need feedback as well, good and bad.

Hi, I'm new to the forum. My Chinese herbalist recently suggested that this could be my problem (dh). I was really interested in how you signed off about "chocolate". I am just discovering "hidden gluten". Does chocolate have hidden gluten?

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Hi, I'm new to the forum. My Chinese herbalist recently suggested that this could be my problem (dh). I was really interested in how you signed off about "chocolate". I am just discovering "hidden gluten". Does chocolate have hidden gluten?

Hi!

Ah... Chocolate. :)

I should clarify that my sig's talking about pure chocolate, not chocolate in things like Milky Way and Reeses Peanut Butter Cups. Other people can tell you about those; I'm a snob for the good, pure chocolate. ;)

Technically, the answer to your question, in my experience, is no - it's not hidden. But you have to read the label, because it can be on there. Most good, solid chocolate does not contain gluten at all. There are a couple of noteable exceptions, such as Green & Black's Mint Dark Chocolate and Caramel Dark Chocolate contain glucose syrup derived from wheat. I've seen one or two that list malt on them, which would mean they were right out, but don't recall the names. Those cases are all well marked on the label, however, so it's not hidden, you just have to read the ingredients.

The sig actually comes from discussions we've had over what soy-free chocolates are available. A number of people on the board are also soy-intolerant, to the degree that they avoid soy lecithin as well.* But soy lecithin is a very commonly used emulsifier in chocolate, so it can be very difficult to find truely so free chocolate. Due to a recurring "Chocolate Thursday" event at work (we taste a new fancy chocolate every week at work; oh life is rough :) ), which had me search out oodles of chocolate, I found a number of soy-free ones, including: Domori, Cluizel, Castelain, Bonnat, Theo, and Vivani. (I've had all of them but the Vivani, so far, in at least two varieties. I've ranked them in order of my preference, but I like strong chocolate.)

There was general discussion over what was good chocolate, too. ;)

*(I should note that many people who find that they cannot tolerate soy, even if it's due to an allergy, can tolerate soy lecithin, but many cannot. So I don't want to imply that if you think you need to avoid soy, you automatically have to avoid lecithin as well. It's something to determine, but I wouldn't call it automatic.)


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I feel like I am one of the lucky ones because I got my diagnosis only 2 years after the symptoms started. I also feel lucky that my biggest issue (I think) is this rash. I am so happy to have caught celiac disease before I became truly and dangerously ill like so many of you have.

It is amazing that I even got the diagnosis

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Hi, I'm new to the forum. My Chinese herbalist recently suggested that this could be my problem (dh). I was really interested in how you signed off about "chocolate". I am just discovering "hidden gluten". Does chocolate have hidden gluten?

Most chocolate is ok. Again, just read the labels, but there's plenty out there that you can have: Snickers, M&Ms, Mounds, Almond Joy, Dove, Andes Mints, Milky Way DARK (note: Milky Ways made with milk chocolate is NOT gluten-free).


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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