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Marlene

Another Uninformed Doctor

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So, my 11 year old niece has been having major stomach/ bowel issues ever since she had parasites last summer. She has been extremely lethargic, has stomach pains, and is so constipated that her parents have to give her laxatives just to get her to go (which they don't like doing - obviously). Someone at my sister-in-law's work mentioned Celiac to her so she called me and we talked about the whole gluten intolerance thing.

They took my niece off gluten and within a few weeks, her symptoms improved. She was not always as strict with the diet as she could have been but they did improve, nonetheless. So they took her to a gastroenterologist who refuses to test her for Celiac. He said there is no way she can have it because (are you ready for this??) SHE HAS LONG HAIR. He told them to put her back on a regular diet. They did :( and within a week she was back to major constipation and stomach pains.

Anyway, I think they are going to put her back on the diet but they are the kind of parents who seem to want re-assurance from a medical professional that they are doing the right thing. That is understandable but I am just trying to encourage them to keep her on the diet since it is helping, no matter what the doctor says.

Do you think doctors will ever figure this out??

Marlene

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So, my 11 year old niece has been having major stomach/ bowel issues ever since she had parasites last summer. She has been extremely lethargic, has stomach pains, and is so constipated that her parents have to give her laxatives just to get her to go (which they don't like doing - obviously). Someone at my sister-in-law's work mentioned Celiac to her so she called me and we talked about the whole gluten intolerance thing.

They took my niece off gluten and within a few weeks, her symptoms improved. She was not always as strict with the diet as she could have been but they did improve, nonetheless. So they took her to a gastroenterologist who refuses to test her for Celiac. He said there is no way she can have it because (are you ready for this??) SHE HAS LONG HAIR. He told them to put her back on a regular diet. They did :( and within a week she was back to major constipation and stomach pains.

Anyway, I think they are going to put her back on the diet but they are the kind of parents who seem to want re-assurance from a medical professional that they are doing the right thing. That is understandable but I am just trying to encourage them to keep her on the diet since it is helping, no matter what the doctor says.

Do you think doctors will ever figure this out??

Marlene

Marlene,

Tell them to get a new GI doctor. If I heard an absurd statement like that about long hair, I would be out of there quicker then ever!! PLEASE, PLEASE encourage them to go to a new GI doctor especially if a diagnosis is that important to them!! Good Luck!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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*sigh*......

Shaking my head in disbelief! :huh:


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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:blink:

I had to read that about three times before replying... I'm speechless...

Thank God your neice and her parents have you around as a voice of sanity! I hope they find a knowledgable doctor soon!!!


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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Long hair???? That's a new one! <_<:blink::huh:

I hope the next doctor they see is better informed--keep us posted.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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that is too funny!!------we see how doctors can have old info and think that all celiacs must have the runs and be wasting away, but long hair?????

hope they find a new doctor!!!


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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Find a new doctor, have her continue eating gluten until they run the full Celiac panel (AGA IgA, AGA IgG, total Serum IgA, EMA, ttG), and send this doctor some information about the NIH Campaign to increase awareness among doctors about Celiac, because he is a classic example of why this campaign is needed.

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They took my niece off gluten and within a few weeks, her symptoms improved. She was not always as strict with the diet as she could have been but they did improve, nonetheless. So they took her to a gastroenterologist who refuses to test her for Celiac. He said there is no way she can have it because (are you ready for this??) SHE HAS LONG HAIR. He told them to put her back on a regular diet. They did :( and within a week she was back to major constipation and stomach pains.

Marlene

OMG! So that's how my 27year old husband got celiac! He had long hair to his mid back for years, even when I met him and then he decided to cut his hair and Whammo! he came down with celiac AFTER he had long hair! What a revelation! So the moral is that he should have never cut his hair!

Oh, I see now!

Is this doctor a real gastro or a real doctor for that matter?

I told my husband about this doctor and his first response was "Is that a joke?"


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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My son had a doctor look at him and say, "You do not need to be tested, you do not look like a celiac!" Do we look different? I was under the impression that we look the same as other people. Do we have antenna that none of us know about? Another son was told, "It's not necessary to test you for that now!" I finally get them to agree to be tested and an unknowlegable doctor tells them this crap!

I do think more doctors are getting it, yet some may never understand!


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Marlene,

Tell them to get a new GI doctor. If I heard an absurd statement like that about long hair, I would be out of there quicker then ever!! PLEASE, PLEASE encourage them to go to a new GI doctor especially if a diagnosis is that important to them!! Good Luck!!

She has LONG HAIR??? What does that have to with anything? Are all Celiac's bald? That makes no sense at all! Yes, definitely tell them to see another GI person. This one sounds like a total quack.

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