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What Does The Average Celiac Look Like

cbonner

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cbonner Newbie
cbonner
Posted

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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pricklypear1971 Community Regular
pricklypear1971
Posted

The typical Celiac looks sick and tired and after hearing that, pissed off.

IrishHeart Veteran
IrishHeart
Posted

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...."

love2travel Mentor
love2travel
Posted

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!

cbonner Newbie
cbonner
Posted
  • Author

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

Aly1 Contributor
Aly1
Posted

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

Ellie84 Apprentice
Ellie84
Posted

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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IrishHeart Veteran
IrishHeart
Posted

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!

cbonner Newbie
cbonner
Posted
  • Author

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.

bartfull Rising Star
bartfull
Posted

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.

Gemini Experienced
Gemini
Posted

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

Gemini Experienced
Gemini
Posted

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.

Judy3 Contributor
Judy3
Posted

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

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

cbonner Newbie
cbonner
Posted
  • Author

Thanks Bartfull:That improved my day and made me :rolleyes: :rolleyes:

Poppi Enthusiast
Poppi
Posted

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.

GottaSki Mentor
GottaSki
Posted

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

I agree--awesome post!!!

-- Sillyaks are like any other human in that every human being is DIFFERENT!!! When I was FINALLY diagnosed at 42 two different docs said things like "Celiac, that is a childhood disease" and "I don't think you have Celiac, people with Celiac are very thin"

IrishHeart Veteran
IrishHeart
Posted

I met a fellow Celiac at the gluten-free cafe near me who is 5'11" :) and SHE had been over 245 before falling really ill.

Also, Charles,

you'll appreciate this one!

When I mentioned your post today to a nurse friend of mine --who is very celiac-savvy and knows how long it takes to be DXed--said this:

You should have told him:

5'10"-180 lbs.

;)

I must have been a little sleepy this morning--because that's a snappy cool answer and I wish I had thought of it. :lol:

IrishHeart Veteran
IrishHeart
Posted

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

Ditto from me!!!--- :lol: :lol: :lol: cool beans!

love2travel Mentor
love2travel
Posted

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.

I am with you on this. Living in constant pain and dealing with subsequent severe insomnia, often debilitating and agonizing, has taken its toll on me as well. The odd time I do feel my age but more often like I am 75. Am I the only one who must stand in church after awhile? Anyone else need a lumbar support to sit to eat? Anyone need to lie down on the floor just to watch TV or when visiting with guests? I have yet to see this happen aside from myself but I also refuse to allow it to stop me from living.

I do truly feel for so many of you who get so very ill when glutened and/or other auto-immune diseases. I am unable to work much due to pain but would gladly work full time if I could just get rid of the pain.

IrishHeart Veteran
IrishHeart
Posted

I am with you on this. Living in constant pain and dealing with subsequent severe insomnia, often debilitating and agonizing, has taken its toll on me as well. The odd time I do feel my age but more often like I am 75. Am I the only one who must stand in church after awhile? Anyone else need a lumbar support to sit to eat? Anyone need to lie down on the floor just to watch TV or when visiting with guests? I have yet to see this happen aside from myself but I also refuse to allow it to stop me from living.

I do truly feel for so many of you who get so very ill when glutened and/or other auto-immune diseases. I am unable to work much due to pain but would gladly work full time if I could just get rid of the pain.

Me too, kiddo--but you and I have discussed this many times, haven't we hon? Lumbar pillows, neck pillows, back brace, heat/cold packs, PT and MT...I work constantly to regain my muscles and stop the chronic, debilitating burning pain in my joints, bones, muscles and nerves. Not being able to sit, stand, walk or lie down without searing pain---that is just the insanity of my life since early 2008. I was in constant motion all day long. Even clothing hurt my skin. No sleep at night. No drugs helped the pain. My muscles lost all tone. It was all from the Celiac.

I always looked YOUNG for my age but the last 2 years--holy crap, I aged 10 in 2. :( (I look a bit better after 11 months gluten-free.)

But I do not let it beat me down--and neither do you! I am getting stronger and the pain is less intense. I can sleep almost 5 hours now. ;) I never lose hope things will continue to improve.

love2travel Mentor
love2travel
Posted

Me too, kiddo--but you and I have discussed this many times, haven't we hon? Lumbar pillows, neck pillows, back brace, heat/cold packs, PT and MT...I work constantly to regain my muscles and stop the chronic, debilitating burning pain in my joints, bones, muscles and nerves. Not being able to sit, stand, walk or lie down without searing pain---that is just the insanity of my life since early 2008. I was in constant motion all day long. Even clothing hurt my skin. No sleep at night. No drugs helped the pain. My muscles lost all tone. It was all from the Celiac.

I always looked YOUNG for my age but the last 2 years--holy crap, I aged 10 in 2. :( (I look a bit better after 11 months gluten-free.)

But I do not let it beat me down--and neither do you! I am getting stronger and the pain is less intense. I can sleep almost 5 hours now. ;) I never lose hope things will continue to improve.

Irish, as always, you are so sweet and kind and encouraging. I have been going through a phase where it hurts just to wear clothes and I actually dread taking them off because it will cause pain. Nights are so bad that I get up about once an hour to walk up and down steps because I cannot stand the pain. I am SO glad you are sleeping up to 5 hours! That is awesome.

There is ALWAYS hope, isn't there? :) This dumb old pain cannot control me. :D I have more important things to do.

IrishHeart Veteran
IrishHeart
Posted

Irish, as always, you are so sweet and kind and encouraging. I have been going through a phase where it hurts just to wear clothes and I actually dread taking them off because it will cause pain. Nights are so bad that I get up about once an hour to walk up and down steps because I cannot stand the pain. I am SO glad you are sleeping up to 5 hours! That is awesome.

There is ALWAYS hope, isn't there? :) This dumb old pain cannot control me. :D I have more important things to do.

There is always hope because healing can happen. I'm going to PM you -- with some thoughts of things that have helped. xxoo

bartfull Rising Star
bartfull
Posted

If sincere wishes could stop the pain, you would both be up and dancing a jig. Remind me next time I complain about MY pain, that it could be a lot worse! Mine is just in my jaw. And I have started sleeping again, sometimes as many as eight full hours. I wish there was something I could do to make YOU feel better too. The best I can offer is a cyber (((((HUG))))), and my continued prayers.

love2travel Mentor
love2travel
Posted

If sincere wishes could stop the pain, you would both be up and dancing a jig. Remind me next time I complain about MY pain, that it could be a lot worse! Mine is just in my jaw. And I have started sleeping again, sometimes as many as eight full hours. I wish there was something I could do to make YOU feel better too. The best I can offer is a cyber (((((HUG))))), and my continued prayers.

It honestly is helpful knowing that kind people like you are thinking about folks like us! We really do have a special family here. :)

IrishHeart Veteran
IrishHeart
Posted

It honestly is helpful knowing that kind people like you are thinking about folks like us! We really do have a special family here. :)

Double ditto from me!!! xxoo

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      Gluten free thyroid medications

      By maryannlove · Posted

      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Gluten free thyroid medications

      By KimMS · Posted

      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
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