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JoyfulM

Diagnosis

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I'm going to see my Dermatologist tomorrow for the first time since I was diagnosed, and I have a bit of a bone to pick with her.

When I was diagnosed, I was told over the phone by the office secretary. I was told that I have DH, I need to go on a gluten free diet, to start taking Dapsone immediately, and to come in in two weeks for blood work. No explanation of what gluten is, no help with the diet, etc. Luckily I have a friend who is gluten-free who has been a big help. I called the doctor's office yesterday to see when I needed to come in Wednesday (all I was told was "sometime in the afternoon") so I could speak with her, and they acted surprised that I want to talk to the doctor. Did they just expect me to come in for blood work and leave?

Is this the normal experience during diagnosis? How should I express my concerns to her when I see her tomorrow?


joyful

Gluten free since 11/13/07

Change blows through your life like a tornado, uprooting everything. Creating chaos. You wait for the dust to settle and then you choose. You can live in the wreckage and pretend it's still the mansion you remember. Or you can crawl from the rubble and slowly rebuild.

(slightly edited quote from Veronica Mars)

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Joyful,

Sadly, this is actually MORE help than most people get.....because at least she knew you HAD DH. Most derms don't even know what that is, or if they do, they rarely diagnose it.

Even my wonderful GI, whom I adore, handed me a few photocopied pages about what to eat and what not to eat - but it certainly didn't cover everything. That's when I found this forum, and learned how to eat/live from the people who live wtih it.

Your doctor and the people working in that office probably have no idea either 1) what gluten is, and 2) where it's found. It's highly likely the doctor has no idea how to direct you to eat.

So yeah, this is pretty normal, actually. :angry: It's doubtful the doctor will be able to give you any clear answers, but it might be fun to start asking tons of questions anyway, just to see how......befuddled she gets. (well, that's what *I* would do anyway :ph34r: )

Let us know what happens.


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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Yep, pretty normal. That is how I found out. The nurse at my dr's office called me and said the test was positive, and that was it. I have talked to my dr since, and he admits that I know more than he does, and I can find all I need to know on the internet. Doctors are good at giving the wrong advice, too. So it is better to do your own research.


ptkds

Mom of 4 beautiful girls (the 2 youngest are only 10 months apart!)
Diagnosed with Celiac disease on November 8, 2006; gluten-free as of 12-1-06.

DD#2 13 years old; diagnosed on November 28, 2006. gluten-free as of 12-7-06.
DD#3 9 years old; diagnosed through blood work in October 2006. Gluten-free as of mid-November and doing GREAT!!
DD#4 8 years old; had a scope done on 6-22-07 (at 14 months old) and the dr saw stomach ulcers, but all test results were negative. GI dr told us to put her on the gluten free diet anyway. She is gluten free as of 6-22-07.

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Joy,

I would ask what blood test they are doing. DH by itself is a positive diagnosis for Celiac. Plus, you have already started a gluten free diet which may affect a blood screening. I would want to know what she is testing?

We were told by a nurse practitioner. However, we didn't even know they were testing my daughter for Celiac disease so it was totally out of the blue. I knew what it was because I have two friends with daughters who both have Celiac. They recommended a dietician but by the time we got in to see her, we were already well- and self-educated.


Janet

Experience is what you get when you didn't get what you wanted.

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I'm going to see my Dermatologist tomorrow for the first time since I was diagnosed, and I have a bit of a bone to pick with her.

When I was diagnosed, I was told over the phone by the office secretary. I was told that I have DH, I need to go on a gluten free diet, to start taking Dapsone immediately, and to come in in two weeks for blood work. No explanation of what gluten is, no help with the diet, etc. Luckily I have a friend who is gluten-free who has been a big help. I called the doctor's office yesterday to see when I needed to come in Wednesday (all I was told was "sometime in the afternoon") so I could speak with her, and they acted surprised that I want to talk to the doctor. Did they just expect me to come in for blood work and leave?

Is this the normal experience during diagnosis? How should I express my concerns to her when I see her tomorrow?

My GI doctor emailed my primary doctor with my Celiac diagnosis and told my pcp in a brief, one paragraph email, "She has Celiac. Since I've diagnosed her and have done my job, I don't need to see her ever again. Good luck to her." My pcp made a copy of the email and sent it to me - she said, "If you have questions, please call."

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In my case, I guess part of the problem is my drs are broken in now. They're so used to me doing my own research, they don't really bother telling me much (not that they ever really did) other than a few short sentences, and expect me to do the rest. The only problem with that is I usually can't think of pertinent or important questions during the appt. They generally pop into my head about 2 days later. Then I have to wait another 1-2 months before getting my answers, unless I happen to find them online.

The GI pretty much lost interest after the biopsy came back negative for Celiac, even though he's the one who suggested the dx in the first place. And the only reason I got the endoscopy/ colonoscopy was because of low ferritin and they were looking for a possible source of intestinal bleeding. He never suggested any kind of dietary changes to see if that would help to alleviate the symptoms. When I saw him again after the elimination diet, he was all kinds of impressed that I'd done it on my own. Yeah, no thanks to him. No pamphlets, no printouts, no nuthin. His advice? If it makes you feel bad, don't eat it. Ummmm.... duh?

The holistic MD was a similar experience. Didn't show much interest when I talked to him about possible intolerance to corn. When I asked him about doing an elimination diet, his reply was "Well, yeah. You can do that, I guess". Way to be encouraging. Thanks doc! When I saw him after the elimination diet, once again, he was all kinds of impressed. To me, it just seemed the next logical step. Don't get what the big deal is. And again, no advice, no pamphlets, no printouts, no nuthin.

Can you tell I'm just a little miffed with docs these days?


2/05 GERD

3/07 Multinodular goiter (suspicious for follicular neoplasm as of 11/07)

5/07 Iron, vit D, and B vit deficiencies (all of them), but particularly B1, B5, B12 and folate

6/07 Elevated mercury, subclinical hypothyroid, adrenal fatigue, CFS

9/07 Endo/Colonoscopy - neg biopsy (only took 2 samples), diverticulosis, benign polyps

10/07 PCOS (cysts in breasts, ovaries and cervix)

10/07 Major reaction to wheat challenge. Minor reactions to corn, dairy, barley, and refined sugar

2/08 Candida (per Doctor's Data)

3/08 Lyme disease (clinical dx), began tx

3/08 Intradermal allergy testing - high for wheat, beef, pork, tuna, and corn - moderate for almonds, chicken, coffee, eggs, garlic, gluten, green peas, milk, rice, soy, sugar, tomatoes, green peppers, celery, sesame, garbanzo, mushroom, cabbage, strawberries, and spinach.

4/08 Began tx for babs and bart

4/08 Slightly elevated titres for EBV and HHV-6. IgG1 deficiency.

"What doesn't kill us makes us stronger... and stranger."

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My mom went with me to the doctor yesterday. In talking to her, we found out that:

1) My biopsy came back as probable for DH. She did not run the Celiac test. :huh:

2) Everything we said she agreed with. I probably could have convinced her that Hitler was really the Dali Lama.

3) To quote my mother, "The woman at the front desk knows more than she does."

So I'm going next week so she can draw blood for the Celiac test. Should I eat gluten before the test?


joyful

Gluten free since 11/13/07

Change blows through your life like a tornado, uprooting everything. Creating chaos. You wait for the dust to settle and then you choose. You can live in the wreckage and pretend it's still the mansion you remember. Or you can crawl from the rubble and slowly rebuild.

(slightly edited quote from Veronica Mars)

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You have been gluten-free for two weeks. Chances are that a blood test will be false negative by now, even if it would have been positive two weeks ago. Eating gluten for a few days before the test might still result in a false negative result.

If I was you (and had the money), I'd forget about ignorant doctors and get tested with Enterolab instead. Those tests are still accurate up to a year of eliminating gluten.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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

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You have been gluten-free for two weeks. Chances are that a blood test will be false negative by now, even if it would have been positive two weeks ago. Eating gluten for a few days before the test might still result in a false negative result.

If I was you (and had the money), I'd forget about ignorant doctors and get tested with Enterolab instead. Those tests are still accurate up to a year of eliminating gluten.

But if you already have a diagnosis of DH, you don't NEED any more testing!!!! DH is a definitive diagnosis of celiac.

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But if you already have a diagnosis of DH, you don't NEED any more testing!!!! DH is a definitive diagnosis of celiac.

Right, I forgot about that! No more testing needed.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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

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Right, I forgot about that! No more testing needed.

HAHAHAHAHAHAHAHAH!!! You know, I forget everything already and I'm only 23. How's everyone going to be able to tell when I get old if I have Alzheimer's? There won't be any difference!


If you're going through hell, keep going. ~Winston Churchill

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HAHAHAHAHAHAHAHAH!!! You know, I forget everything already and I'm only 23. How's everyone going to be able to tell when I get old if I have Alzheimer's? There won't be any difference!

Keep eating gluten free and you most likely will not develop it. Did you see the research posted a while back about the link between dementias and celiac? For those of us with brain fog that certainly was not a surprise.


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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I agree, you were LUCKY to get diagnosed... sad as that is it's a reality.

As for 'help' ... Again you were lucky in a funny way. Most Doctors have no idea what gluten-free diet entails... they just never considered the issues like cross contamination or hidden gluten.

The help they are able to give is likely more harm than good. Lets presume you know its obvious you can't have normal bread and pasta... the lists likely just say 'cookies, cakes ....etc. etc.) so if you follow his chances are you're still getting gluten and wondering how/why??

This forum will really help much more.

Hang about, read old posts, do searches from cross contamination or hidden gluten etc.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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