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Shawn

Why Bother To Have An Endoscopy?

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Hello,

My Dr. wants me to have an endoscopy to be sure that I have Celiac (no stomach symptoms, just bad DH). If my symptoms go away when I'm off gluten, why bother to get glutened-up and go through a procedure? If it shows negative, they're saying it still could be false. I'm just not sure it's necessary, and I don't want to get glutened up again and break out.

Help!

Thank you,

Shawn

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I personally think you should decline the endoscopy. A firm diagnosis of DH is a firm diagnosis of celiac. Have you had the DH biopsied?

In any case, you don't need a prescription to stay on the diet, so feel free to tell the doctor to scope himself instead if he's so keen on it. :P


gluten-free May 17, 2007; casein-light since June 2007

Dx'ed gluten/casein intolerant by Enterolab. Family doc dx'ed "gluten sensitive" after dietary response. DQ 6 & DQ 7

8 year old daughter dx'ed gluten/casein intolerant & malabsorption by Enterolab and has been GFCL since June 12, 2007. Excellent response to diet, including growth! Tummyaches & irritability are gone! DQ 5 & DQ 6

Husband has DQ 5 (elementary, my dear Watson!). Self-diagnosed gluten-intolerant by diet response and challenge.

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The only positive benefit of a biopsy could be qualifying you for future medical studies that require a biopsy diagnosis (why that would be better than a DH diagnosis is beyond me) or if there is any other damage your GI wants to check for.

Other than that, from a practical daily life POV, a biopsy is not necessary.

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The endoscopy also opens doors to you for certain benefits -- some support groups won't let you join without a positive test, you can't deduct your gluten-free food from your taxes, etc.

Don't know where Shawn lives, but in the US, neither one applies.

I think your doctor is trying to pad his bank account. DH is unquestionably celiac. You might try contacting the insurance company (if you are in the US) and ask them if they are aware that your doctor is prescribing unnecessary invasive and expensive tests.

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Guest j_mommy

For some the diet is enough, for others they like a firm DX. DH should be firm enough concidering you only get DH if you have celiac.

I chose to have the testing done b/c I wanted to know for sure. But if you are already gluten-free, then you would need to do a gluten challenge(4 slices a bread a day for a month atleast) and the costs may not be worth it to you!

It's your choice!!!

Good Luck with whichever you choose!

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I agree with others. If you are diagnosed with DH, why is your doctor wanting to do an endoscopy?

I have copied some info from a site about DH and a doctor who specializes in it.

This is different than an investigation to see what's wrong...they already know what's wrong and the treatment is gluten free diet...and that Dh is accompanied by gluten enteropathy damage.

http://www.dermatitisherpetiformis.org.uk/whatisdh.html

The first suggestion that patients with DH also have an enteropathy identical to coeliac disease (celiac disease) was made in 1967. This was confirmed by showing the enteropathy cleared with gluten withdrawal from the diet and recurred when gluten was reintroduced. It was subsequently shown that all patients with DH have evidence of a gluten enteropathy. However, in the majority of patients the enteropathy is mild and does not give rise to symptoms such as abdominal pain, weight loss and diarrhoea. Thus, all patients with DH have associated celiac disease although it could be described as latent celiac disease in the majority.

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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Why bother with an Endoscopy if you are already diagnosed with DH? Why to pay for the GI's trip to Europe of course, he promised your doctor some duty free perfume. Just kidding, sort of.


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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This site is always so helpful in many ways. Shawn, I've also read in plenty of places that DH is positive proof of Celiac. Having those blisters when I eat wheat is what finally convinced me.

This string of reactions to that endoscopy by posters in this thread is helping me. After a couple years of foot dragging and unconcern from my primary care physician, I ended up with a nutritionist trained in Chinese medicine who pointed out that it looked like I had GI problems, a problem with wheat and a problem with milk.

I dropped wheat, and progressively learned to get more gluten out of my diet and my health returned. That's my basic story, although I have a mild dairy intolerance and DH blisters when I take in gluten. The doc did a blood test about about 9 months after I quit eating wheat and (of course) the tests were, as he said "inconclusive"...no surprise. But he said I had Celiac because of my drastic improvement of health when I quit eating gluten.

So body-wise, I'm entirely convinced that gluten is a damager. Western medicine-wise, I have some unanswered questions...for example, I've never had a test prove whether I have Celiac or wheat intolerance. I do have gut reactions, not allergic reactions when I eat gluten, but that's information from symptoms. Which is enough for me.

But I've always wondered what STATE my gut is in, because I do understand from reading that it's the state of the gut that opens people up for other sicknesses, like getting cancer and my grandfather did die of stomach cancer at 50.

So I've been musing whether an endoscopy would give me a picture of my current gut health, or something...what kind of gut I have, maybe.

Costly, as several of you well point out.

And the bottom line of so many of the posts in this thread I certainly agree with, which is that the effort needs to be put in on scrupulous avoidance of gluten and other nutritional habits.

Maybe this thing I have about wondering if I need to go to a gastroenterologist, which might lead to endoscopy, is that I'm still adjusting to the fact that this gluten avoidance and being hyperaware about being glutened is going to have to be for the rest of my life....

Anyway, thanks everyone, for your thoughts about the usefulness of that endoscopy.

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Thank you SO much for your responses. You've confirmed what my gut (no pun intended) has been telling me. The costs of putting gluten back into my diet are too high of a price to pay for a diagnosis that will only require what I am already doing....The costs of the endoscopy pale in comparison.

I have been told that I cannot go out to eat anymore (unless the restaurant is gluten free) because of the cross-contamination. And I have found this to be true, since I get blisters when I eat out, even when I think I've stuck to it. Other than that, I've been vigilant.

Thanks again,

Shawn

This site is always so helpful in many ways. Shawn, I've also read in plenty of places that DH is positive proof of Celiac. Having those blisters when I eat wheat is what finally convinced me.

This string of reactions to that endoscopy by posters in this thread is helping me. After a couple years of foot dragging and unconcern from my primary care physician, I ended up with a nutritionist trained in Chinese medicine who pointed out that it looked like I had GI problems, a problem with wheat and a problem with milk.

I dropped wheat, and progressively learned to get more gluten out of my diet and my health returned. That's my basic story, although I have a mild dairy intolerance and DH blisters when I take in gluten. The doc did a blood test about about 9 months after I quit eating wheat and (of course) the tests were, as he said "inconclusive"...no surprise. But he said I had Celiac because of my drastic improvement of health when I quit eating gluten.

So body-wise, I'm entirely convinced that gluten is a damager. Western medicine-wise, I have some unanswered questions...for example, I've never had a test prove whether I have Celiac or wheat intolerance. I do have gut reactions, not allergic reactions when I eat gluten, but that's information from symptoms. Which is enough for me.

But I've always wondered what STATE my gut is in, because I do understand from reading that it's the state of the gut that opens people up for other sicknesses, like getting cancer and my grandfather did die of stomach cancer at 50.

So I've been musing whether an endoscopy would give me a picture of my current gut health, or something...what kind of gut I have, maybe.

Costly, as several of you well point out.

And the bottom line of so many of the posts in this thread I certainly agree with, which is that the effort needs to be put in on scrupulous avoidance of gluten and other nutritional habits.

Maybe this thing I have about wondering if I need to go to a gastroenterologist, which might lead to endoscopy, is that I'm still adjusting to the fact that this gluten avoidance and being hyperaware about being glutened is going to have to be for the rest of my life....

Anyway, thanks everyone, for your thoughts about the usefulness of that endoscopy.

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