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What Does The Average Celiac Look Like


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#1 cbonner

 
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Posted 14 December 2011 - 11:07 AM

I have suffered with stomach issues for many years.I have been treated for ulcers and been on Prilosec for reflux for many years.I have become unable to eat ice cream or milk.I have had multiple colonscopy and endoscopy test over the years.On my most recent doctors visit yesterday I asked my doctor to test me for celiac disease.I was floored by her response."You don't have celiac.Look at you 5'10"-180#. It is a waste of time." After a short discussion that they (doctors) had not been able to match my many symptoms with a solution for decades we agreed on the blood test.She agreed to do this just to get it behind as as the source of my many problems.It is so frustrating to go to a doctor and list the multiple recurring issues and be told they can't be-they can't be related-there must be multiple problems all as they nod their collective heads like a bobble head doll.
So my question is since a trained pro can tell at a glance if a person has celiac we must all look alike.How can we get the medical profession to understand that you can't tell a celiac by the size of his shoe or the color of his hair.I'm sorry if my frustration is bubbling over in this post;but if relief can be obtained by going to a gluten free diet why are doctors so resistent to trying this approach.I,m looking forward to my test ;but will be on a gluten free diet as soon as the blood leaves my body.I'll keep you posted. Charles
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#2 pricklypear1971

 
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Posted 14 December 2011 - 11:51 AM

The typical Celiac looks sick and tired and after hearing that, pissed off.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
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Responsive to iodine withdrawal for DH (see quote, above).

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#3 IrishHeart

 
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Posted 14 December 2011 - 02:18 PM

There are no "average" Celiacs, Charles.

I was fat and sick, then I was emaciated and sick. Lost 90 lbs, without trying and then, I lost my hair and muscle mass, etc. etc.

"It's not celiac!"; yeah, I heard that too. <_<

If I had not persisted, I'd be dead.

When my new GI saw pictures of me from those 3 years ( and saw my LOOOONG list of symptoms) his eyes filled up and all he could say was.."oh wow, this is so wrong...."
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#4 love2travel

 
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Posted 14 December 2011 - 03:20 PM

Your doctor's response is incredibly aggravating. :angry: There is no way anyone could tell by looking at me that I have celiac. I am a little overweight (but thankfully am tall!) and do not sickly. As I live with continuous chronic pain those who know me see the pain in my eyes but I agree that there is no such thing as an "average" celiac. We all have such varied symptoms, ranging from nothing to extreme agony.

When do you get your bloodwork done? Just remember that there is a high chance of false negatives - I have read and heard up to 30%. So, if you feel better off gluten, that may be all you need to know.

All the best of luck with this, Charles. The diagnostic process can be infuriating to many!
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#5 cbonner

 
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Posted 14 December 2011 - 04:02 PM

I took my blood test today and should have the results by Monday.I know celiac is not to be taken lightly;but I am hoping for a positive test so I can finally have an enemy to fight.I am so tired of doctors acting like I am a nut when I tell them my issues.The last GI doctor I went to looked at my records and said" if you have all these problems I can't help you.Go to the Mayo clinic for a diagnosis"I called the Mayo Clinic and they refused me an appointment because my insurance is Medicare.I'm starting my gluten free diet today and plan to eat that way from now on.I'll post my test results as soon as I get them.Thanks Everyone for your support and an early Merry Christmas Charles
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#6 Aly1

 
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Posted 15 December 2011 - 04:56 AM

I went to Mayo and they didn't correctly diagnose me! So you've yourself a trip and more aggravation!
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#7 Ellie84

 
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Posted 15 December 2011 - 05:31 AM

Many coeliacs don't fit into the "classic" symptoms of pale, underweight patients. I was quite chubby at the time because I constantly over-ate. Now that I'm on the diet my hunger cravings have also subsided and my weight is slowly returning to normal.
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27, F, from the beautiful area of Twente in the Netherlands. English is not my first language, so I apologize for any errors.

Symptoms started in 2007, but no link to celiac disease was found until 2009. I learned of celiac disease through the internet, my doctor never recognized it. She put me on a diet before tests were done, so the initial tests failed. My GI advised me to do a gluten provocation, which had to be stopped too soon to take a reliable biopsy. Based on symptoms such as vitamin deficiencies, GI problems and osteopenia my diagnosis now is: glutenintolerant, suspected celiac disease. This diagnosis was in march 2010, and I've been so much better ever since.

#8 IrishHeart

 
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Posted 15 December 2011 - 06:24 AM

I took my blood test today and should have the results by Monday.I know celiac is not to be taken lightly;but I am hoping for a positive test so I can finally have an enemy to fight.I am so tired of doctors acting like I am a nut when I tell them my issues.The last GI doctor I went to looked at my records and said" if you have all these problems I can't help you.Go to the Mayo clinic for a diagnosis"I called the Mayo Clinic and they refused me an appointment because my insurance is Medicare.I'm starting my gluten free diet today and plan to eat that way from now on.I'll post my test results as soon as I get them.Thanks Everyone for your support and an early Merry Christmas Charles



As someone who has "been there/done" that with DOZENS of doctors, I can tell you this: Celiac is woefully misunderstood and the range of gluten sensitivity to intolerance to celiac is wide. Not many doctors seem to understand this spectrum, despite the efforts of leading Celiac researchers like Dr. Alessio Fasano who have published reports explaining why so many of us suffer symptoms that seem "inexplicable" or do not fit a "standard" diagnosis. Last Spring, he published a report explaining how gluten sensitivity can cause multiple symptoms similar to Celiac. Does anyone in the medical community bother to read any current medical journals, one wonders?? <_<

The "typical" celiac patient--does not exist. Babies, 80- year - olds, thin, overweight, all colors, shapes, sizes and nationalities, male and female--anyone can have gluten intolerance.

Dr. Fasano (who runs the Center for Celiac Research in Baltimore and who was born in Italy)wrote a medical journal article back in 1996, wondering why it was so under-diagnosed here--but I think his implication was that the medical community does not recognize it or diagnose it properly. Here is the abstract:

"Acta Paediatr Suppl. 1996 May;412:20-4.
Where have all the American celiacs gone?

Fasano A.
Source: Division of Pediatric Gastroenterology and Nutrition, University of Maryland, School of Medicine, Baltimore 21201, USA.
Abstract

Celiac disease is a common cause of malabsorption in western countries, with significant geographic variation in incidence. Recent epidemiological studies using serology tests, however, suggest that the disease is more common than previously realized and homogeneously distributed in Europe. These studies have also demonstrated that the clinical presentation of the disease may greatly vary even between neighboring countries. Celiac disease remains a rare diagnosis in the United States. Whether the disease is underdiagnosed or is truly rare remains to be established. We have conducted preliminary studies, both on pediatric patients and adult blood donors, that seem to suggest that the prevalence of positive screening tests for celiac disease in the USA is equivalent to that reported in similar screening studies conducted in Europe. These data also suggest that the dimensions of the American celiac disease iceberg seem to be similar to those of the European one. The visible tip of the American iceberg, however, appears to be much smaller, since most of it still remains submerged. The reasons for these divergences remain unknown and may only be partially related to the limited attention to the disease by the American scientific community. Large, multicenter serological screening studies are needed to define the true prevalence of celiac disease in the United States."

That was published in 1996. Has anything changed???

And so many of us on here are living proof that unfortunately, they still don't see it ---when it is right in front of them--because they are not aware of the various clinical manifestations of it and the body-wide havoc it can wreak. Many of us on here are self-diagnosed because we figured it out ourselves when no one else could. And we are alive because of it :)--although we all suffered dire consequences as a result of being ignored, misdiagnosed or told "it's all in your head".

You've got the right idea, Charles--be your own best advocate!! ;)

If you need any help, we're here. :) Keep us posted!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#9 cbonner

 
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Posted 15 December 2011 - 08:14 AM

Thanks everyone for your responses.It must be true that misery loves company.We have all had enough misery and I am glad I have found this group to provide me with company.I am gluten free as of noon yesterday and assume I will be as long as my eyes open to see sunrise.I am not a very good writer;but I hope in some way to contribute to the knowledge base this forum can provide.I have started a food consumption diary and hope to track my dietary intake and health progress.Even if I am not proven by test to be celiac I am sure I am gluten intolerant and want to be able to prove it.
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#10 bartfull

 
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Posted 15 December 2011 - 09:19 AM

What does the average Celiac look like? Like this :D on good days. Like this :huh: when we realize we just got CC'ed. Like this :angry: when people make stupid comments.
We look like this :rolleyes: when we think about the delicious gluten free food we CAN have. We look like this :P when people enjoy eating something we made and are shocked to find that it is gluten free. We look like this :( when we hear of someone who has suffered for years the way alot of us have. And just like "normal" people, we look like this :blink: before our morning coffee.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#11 Gemini

 
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Posted 15 December 2011 - 11:30 AM

What does the average Celiac look like? Like this :D on good days. Like this :huh: when we realize we just got CC'ed. Like this :angry: when people make stupid comments.
We look like this :rolleyes: when we think about the delicious gluten free food we CAN have. We look like this :P when people enjoy eating something we made and are shocked to find that it is gluten free. We look like this :( when we hear of someone who has suffered for years the way alot of us have. And just like "normal" people, we look like this :blink: before our morning coffee.


OMG, bartfull!!!!!! This is easily the "Post of the Day"! LMAO! :lol: :P
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#12 Gemini

 
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Posted 15 December 2011 - 11:40 AM

Thanks everyone for your responses.It must be true that misery loves company.We have all had enough misery and I am glad I have found this group to provide me with company.I am gluten free as of noon yesterday and assume I will be as long as my eyes open to see sunrise.I am not a very good writer;but I hope in some way to contribute to the knowledge base this forum can provide.I have started a food consumption diary and hope to track my dietary intake and health progress.Even if I am not proven by test to be celiac I am sure I am gluten intolerant and want to be able to prove it.


Charles..let me tell you this....I am what was once called a textbook Celiac. I never weighed over 105 pounds my entire life and, at 5'4", still a lightweight. When I hit the wall with celiac disease, my weight went down to 97 pounds in 5 days. I was malnourished, weak and wobbly, couldn't leave the house because of the big D, looked like those posters of kids from Africa dying of starvation and you know what? The doctors still missed it! As I desperately did research on the internet in the hopes of finding answers before I died, I came across Celiac Disease and actually had to go back to these dopes and ask to be tested. My blood work was off the charts so I ended up calling it a day, went on a strict gluten-free diet and never looked back. It's been 7 years and I avoid going to doctors unless I have to. They couldn't diagnose a Celiac by looks if one bit them on the bum! :huh:

Oh yeah...and I've never been healthier.
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#13 Judy3

 
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Posted 15 December 2011 - 11:54 AM

OMG, bartfull!!!!!! This is easily the "Post of the Day"! LMAO! :lol: :P


I agree I giggled when I saw the smiley's LOL
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*Judy

Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010

#14 cbonner

 
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Posted 15 December 2011 - 12:00 PM

Thanks Bartfull:That improved my day and made me :rolleyes: :rolleyes:
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#15 Poppi

 
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Posted 15 December 2011 - 12:06 PM

On the outside I look very healthy. I'm a healthy weight, I'm tall, I have great skin. I have ZERO outward signs on celiac.

However I live with daily chronic pain. It is better than it was when I ate a gluten diet and I have more energy but the reality is that I feel like a 70 year old woman living in a 35 year old body. Nobody can see that from the outside.
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Sara

Busy mom to 3 great kids (4, 8 and 18)

Gluten free since April 6, 2011 ~ Also sensitive to coconut, coffee and food dyes

Joint pain, mouth sores, back and neck pain, migraines, stomach pain, chronic fatigue, ADD and depression are all gone.
Wishing I had been diagnosed before celiac robbed me of the cartilage in my toes and the 3 babies we lost to miscarriages.





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