21597 UK Guidelines Mean Irritable Bowel Syndrome Sufferers Will be Tested for Celiac Disease - Celiac.com
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UK Guidelines Mean Irritable Bowel Syndrome Sufferers Will be Tested for Celiac Disease

Celiac.com 06/15/2008 - Many people with celiac disease have stories to tell about the about how difficult it can be to get a getting a proper diagnosis. Celiac disease can mimic so many other conditions. Irritable Bowel Syndrome (IBS) is one of those conditions. The symptoms for Irritable Bowel Syndrome and for celiac disease are often similar as a result the diagnosis of celiac disease can be delayed or missed and misdiagnosed as irritable bowel syndrome.

In an effort to reduce the misdiagnosis of celiac disease as Irritable Bowel Syndrome, Britain’s National Institute for Health and Clinical Excellence has drawn up new guidelines covering the diagnosis of Irritable Bowel Syndrome. The guidelines call for all diagnosis of Irritable Bowel Syndrome to be preceded by a screen for celiac disease. Keeping this in mind, anyone suffering from Irritable Bowel Syndrome, and who has not been tested for celiac disease, might want to take the initiative and check with their doctor to see if further testing might be in order.

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Studies show that a minimum of 1 out of every 100 people in Britain suffers from celiac disease, but that only 1 out of 8 is properly diagnosed. More worrisome still is the fact that new research shows that it takes an incredible 13 years on average before the diagnosis are made. That means 13 years of unnecessary pain and discomfort, to say nothing of potential systemic damage for those awaiting a proper diagnosis of celiac disease, including osteoporosis, bowel cancer and increased risk of other autoimmune diseases.

Since similar numbers likely prevail in America, it's good to keep an eye on clinical changes like the one recently made in Britain. Again, for people diagnosed with IBS, but who have not been evaluated for celiac disease, it might be good to consider getting checked for celiac disease, even if these changes are not officially implemented in America anytime soon. Changes in diagnostic and treatment practices that benefit people with celiac disease are long overdue and highly welcomed by the celiac community.

As our abilities to evaluate diagnostic and treatment practices continue to expand, look for important changes in the clinical approach to celiac disease, greater awareness among the general population, and improvements in the quality of life among celiacs.

References:
1.    The Economic Burden of Coeliac Disease in the UK research paper
2.    Recent advances in Coeliac Disease by D.A. van Heel and J. West, published in Gut 2006 55, pp 1037-1046
3.    Coeliac Society of the UK

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3 Responses:

 
krista
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said this on
28 Jun 2008 4:20:00 AM PDT
This is good news. I hope this practice spreads to the US. It is way overdue. It would be wonderful if they do this in the US and get past the idea that IBS is a diagnosis and accept that it is in reality a symptom. My life and others like me would have been so different and so much more productive if the doctors got their heads out of the PDR and actually looked for a reason instead of telling us to live off Immodium and by the way heres a Prozac while our autoimmune systems destroy our bodies. I hope I live to see the changes in thinking here but I doubt it will come about as long as our medicine driven by pharmaceutical companies and their drug research.

 
Doreen Gabriszeski
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said this on
03 Jul 2008 6:32:19 AM PDT
I agree that doctors should add the Celiac tests when someone has irritable bowel symptoms. I was 'diagnosed' with IBS and suffered off and on for years. Then one day (after getting Lyme Disease), I got worse. I was fortunate that my Lyme doctor had seen many cases of Celiacs and encouraged me to go off gluten for 5 days. I felt the difference and proceeded to assume I had Celiacs. However, I had my blood tested and had an endoscopy/biopsy (after I went back on gluten for 3 weeks) and I did not have the Disease. However, I am definitely sensitive to gluten and feel much better (including no active bowel movements) when I stay off of it. I hope all doctors understand that you can have negative test results, but still react to gluten

 
Debbie
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said this on
12 Aug 2008 1:44:45 PM PDT
This is great, but I wish more doctors would just suggest that you go off gluten and see how you feel. I was off it for 4 mos before getting tested and tested negative so they gave me antispasmodics that knocked me out. I'm much better off refraining from wheat--been feeling so much better for about 3 years. Interesting that it all came on right after a colonoscopy.




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Wish I could give you a hug. Unfortunately I know how that feels with Neurologists, Internists, Endocrinologists, Rheumatologists, GIs..... I got so tired of crying my drive home after refusing yet another script for Prozac. I do hope your GI can give you some answers even if it is just to rule out other possible issues. Keep on the gluten and we are here for you.

It is too bad that so often a full panel isn't done. Glad your appointment got moved up and hopefully you will get a clearer answer from the GI. Do keep eating gluten until the celiac testing is done. Once the testing is done do give the diet a good strict try. Hang in there.

That makes sense...I cried with relief when I got my diagnosis just because there was finally an answer. Please know that you are not weak or crazy. Keep pushing for testing. It could still be celiac, it could be Crohns. Push your Dr's to figure this out. Best wishes.

Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy. I know I'm not crazy, but you know.

From what I have read online there is about a 1-3% chance of getting a false positive for celiac disease from a blood test. Was it a blood test that you got done? It may be worth your while to get a biopsy or more testing just to confirm it. I know being gluten free is a pain but it is better than getting cancer or other auto immune disorders.