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Misdiagnosed?


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33 replies to this topic

#31 beebs

 
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Posted 24 July 2012 - 03:36 PM

Mystery diagnosis, I am with you, I am a very reluctant gluten free person, and I find it especially hard not having a diagnosis. If I had a proper one, then I may not be sitting thinking at least once a day "maybe it isn't gluten, maybe I am on the wrong track".

Unfortunately the testing is not 100% and lots of us are in the same boat.

I too hate the whole 'just go gluten free if it makes you feel better'- I understand the thought process behind it, but I really am a person who needs evidence -solid evidence numbers, facts and figures. I don't know why I am like that - I just am. I thrive on stats and graphs. Although - of course, sometimes that isn't possible and we just have to get on being gluten free. doh!
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#32 IrishHeart

 
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Posted 24 July 2012 - 04:32 PM

If it comes down to having to eat meat again in order to supplement anything I could be losing through a gluten free diet, then so be it. But being vegetarian is a very personal and moral issue that I would grieve over if I had to return to a meat diet.

That's not what I was expecting to do when I joined. So I plan on this being my last post to this forum.


Hon, may I suggest something? First of all (hug) :) and please, hear me out. This forum was part of what saved me from dying. My celiac panel was NEG, too. But it was WRONG.

Darn 210 (Janet) has given you sound advice. Gemini has, too.

No doctor could help me --and I saw dozens in 3 different states--- as I went down hill for 3+ years. I finally figured out it was celiac...and my doctor confirmed it, but not before I had suffered major debilitating consequences. (the irony is...my PC doc has 3 kids with celiac, but he did NOT see it in me for 12 years) Many of us suffer for MANY years before we get relief.

That said....

If we need to eliminate gluten because it is killing us, (and believe me, I am slowly coming back from the dead ) then, we need to look at OTHER sources of nutrients to provide our sustenance.

This is all about making sure we are getting what we need in our FOODS, okay? Time to take a look at what is most important.

YOU! You are most important.

I have been reading this thread all along--before it was edited and after and ...like you, I have a personal and moral issue about eating meat, but I am going to tell it to you straight.

I HAD to eat meat! PROTEIN and lots of it---to eliminate a B-12 and B9 anemia( I mean I had a SEVERE Folate and B-12 deficiency ) that made me unable to walk or THINK straight and sleep--at all. In short, I was a mess. I had so many symptoms, it would take an hour to write it all out. I am not kidding-- and my story on here is well-told, but my brain could not function and I was destined for a wheelchair or a mental health ward. I would not give up. I fought LONG and hard for an answer--for 3 YEARS!!

Once DXed, I began a new life. I learned what to do by listening to the people here on Celiac.com....Gemini, Ravenwoodglass, Skylark , LISA, Kareng, Peter, Sylvia, JESTGAR, Jersey Girl, Lovegrov, MUSHROOM, Eatmeat4good... and DARN210........ and so many more....These people have lived this thing.

So, to eradicate the excruciating burning, numbness, and tingling I had in my entire body, I made choices to EAT.

What it comes down to is this...if you are a celiac, you have been MALNOURISHED for many years and the key to feeling well is...to EAT.

While I respect and admire your desire to not eat meat, you will not recover without: the magnesium, calcium, folate, (B9) B-12, B1 (Thiamine) Vitamin B2 (riboflavin),Niacin (B3)
Pantothenic Acid (B5) - Vitamin B6
Vitamin E, and the important, Vitamin K (which all celiacs are severely deficient in) and Vitamin D...which are found in MEAT.

It is what it is.


I was told --for 20+ years that I had "IBS" and "GERD" and "fibro" and a bunch of other "syndromes" and all along, I was slowly dying from celiac. I knew those "Diagnoses" were not right. I knew something was keeping me ill.

Off gluten, I do not have any of those syndromes, but I am suffering major health consequences from "listening to doctors" and I am in rehab to get my muscles back.

The very celiac-savvy GI doc I have now says "OMG. ...what a disgrace. You are a walking celiac." He has helped me get well the last year through follow-up testing. I do not know If I will recover fully, but you can.

Make a choice---change your diet--- and live a healthy life.
And please, stick around...we do have so much to offer.
Best wishes, IH
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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.
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#33 justlisa

 
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Posted 24 July 2012 - 05:08 PM

IrishHeart... Excellent post!
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#34 ~**caselynn**~

 
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Posted 24 July 2012 - 05:12 PM

Hon, may I suggest something? First of all (hug) :) and please, hear me out. This forum was part of what saved me from dying. My celiac panel was NEG, too. But it was WRONG.

No doctor could help me --and I saw dozens in 3 different states--- as I went down hill for 3+ years. I finally figured out it was celiac...and my doctor confirmed it, but not before I had suffered major debilitating consequences. (the irony is...my PC doc has 3 kids with celiac, but he did NOT see it in me for 12 years) Many of us suffer for MANY years before we get relief.

That said....

If we need to eliminate gluten because it is killing us, (and believe me, I am slowly coming back from the dead ) then, we need to look at OTHER sources of nutrients to provide our sustenance.

This is all about making sure we are getting what we need in our FOODS, okay? Time to take a look at what is most important.

YOU! You are most important.

I have been reading this thread all along--before it was edited and after and ...like you, I have a personal and moral issue about eating meat, but I am going to tell it to you straight.

I HAD to eat meat! PROTEIN and lots of it---to eliminate a B-12 and B9 anemia( I mean I had a SEVERE Folate and B-12 deficiency ) that made me unable to walk or THINK straight and sleep--at all. In short, I was a mess. I had so many symptoms, it would take an hour to write it all out. I am not kidding-- and my story on here is well-told, but my brain could not function and I was destined for a wheelchair or a mental health ward. I would not give up. I fought LONG and hard for an answer--for 3 YEARS!!

Once DXed, I began a new life. I learned what to do by listening to the people here on Celiac.com....Gemini, Ravenwoodglass, Skylark , LISA, Kareng, Peter, Sylvia, JESTGAR, Jersey Girl, Lovegrov, MUSHROOM, Eatmeat4good... and DARN210........ and so many more....These people have lived this thing.

So, to eradicate the excruciating burning, numbness, and tingling I had in my entire body, I made choices to EAT.

What it comes down to is this...if you are a celiac, you have been MALNOURISHED for many years and the key to feeling well is...to EAT.

While I respect and admire your desire to not eat meat, you will not recover without: the magnesium, calcium, folate, (B9) B-12, B1 (Thiamine) Vitamin B2 (riboflavin),Niacin (B3)
Pantothenic Acid (B5) - Vitamin B6
Vitamin E, and the important, Vitamin K (which all celiacs are severely deficient in) and Vitamin D...which are found in MEAT.

It is what it is.

Fish has some, veggies have some, but if you want to get yourself straightened out, and feel better, well, you have to focus on the hierarchy of the world...and it sadly, involves being a carnivore and eating meat.

I was told --for 20+ years that I had "IBS" and "GERD" and "fibro" and a bunch of other "syndromes" and all along, I was slowly dying from celiac. I knew those "Diagnoses" were not right. I knew something was keeping me ill.

Off gluten, I do not have any of those syndromes, but I am suffering major consequences from "listening to doctors".

The very celiac-savvy GI doc I have now says "OMG. ...what a disgrace. You are a walking celiac." He has helped me get well the last year through follow-up testing. I do not know If I will recover fully, but you can.

Make a choice---change your diet--- and live a healthy life.
And please, stick around...we do have so much to offer.
Best wishes, IH


Great post! I must say, I'm glad you're on the upside what a road you have traveled to get here. One of the best things about this site is reading others experiences, and how they have gotten to the point they're at! 😃
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~**caselynn**~




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