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marilyn

Dr. W/celiac disease But Only Acknowledges Classical Symptm

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I have spent the last two days saying "Now, I do not want to play doctor BUT if your Dr. will not order a celiac disease blood screening insist or go to a different Dr."

There is an MD in the community (small) that has had celiac disease for 7 years. Unless there is abdominal distress, diarrhea...just like he/she has...will not screen for this even after it is suggested. A lady joined our support group having been doctored by this MD for the last 5 years before it was screened and then dx. Sent 3 people back yesterday. A 16 year old with what I am suspecting is DH (liver enzymes are off, rash on face since he was 2, thin tooth enamel - mom actually came to me because of his autism and looking for help for other food issues) and later in the day a phone conversation with a mom. 3 kids - 8, 10, and 14. 1 and 2 under 5th percentile for ht/wt and the oldest lost 60 pounds in one year....). Will be interest in hearing back from them to see what happens.

This is very frustrating but I guess all we can do is keep talking and insisting....guess I am ranting too.

These people are contacting me or referred by the M.D. (the later kids for underweight status) because I am a Registered Dietitian. Not all RDs can counsel for this, granted, however, I must say that it is being paid attention to in the literature and continueing education arenas. That said, I also have a

strong family history of celiac disease - my mom's twin sister had celiac disease for 41 years but was diagnosed pretty quickly by Mayo Clinic, my niece at age 13, and I strongly suspect my sister who died had it and probably her daughter who says she has been tested but I am going to continue to ask her about this is she is still having symptoms. I was screened when I suspected DH but all 4 came back -. I had my son genetically tested to due to his inattentiveness, and did the home blood test on my daughter (-). Spouse is having a lot of flatulance lately that we cannot figure out and I am about to send him....

If anyone has any good ideas for working with or around this dr. I would appreciate hearing.

Marilyn

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The only way around this type of personality (Dr) is to lie and say you have abdominal distress and some diarrhea....then AFTER the postive diagnosis you tell her you felt you had to lie to be tested....Maybe this will make the Dr. understand better....


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 suggest to those with suspected DH that they see a derma and ask specifically for a biopsy for it. I would also gather some documents that are fairly recent from publications like Lancet, NIH, and PubMed and give them to him. Doctors don't get much education about celiac. I found it incredible that my GI doctor had no clue that celiac can cause neurological problems. He does now. Try to educate him a bit, would he agree to go to a support group meeting perhaps? If you could talk him in to talking to the group that would make a good reason to give him the info. :ph34r:


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 told the mom about getting a biopsy but since he has other symptoms (enamal, liver enzymes) thought a blood test could be a first start. We have ask this doctor to speak with us and refused (he went into medicine not public speaking).

Understood that Dr. are undereducated but for a dr. with confirmed celiac disease for 7 years that also has children and certainly understands the longterm consquences I guess I will use the suggestion to my clients to lie ...or get another dr. Sad statement. THanks for the replies. marilyn

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I think the suggestion for attempting to educate this person is a sold one.

This doctor knows what it feels like to be sick and unwell and (I am assuming here) that by nature of being a doctor s/he doesn't want others to suffer.

I think it could be a great opportunity to include information about the new correlation between Type 1 diabetes, the NEJM article about inhaled gluten causing damage and an expanded list of symptoms.

(I was very atypical. My biggest problem was regurgitation and rectal bleeding... they thought I had stomach/colon cancer way before they tested for celiac disease)

Some people just really need to see things in print, from studies. (It doesn't make sense... things exist that haven't been studied, but hopefully some knowledge will push your doc towards a more greater awareness)

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