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Electra

What If I Already Have Permanent Damadge?

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Ok after reading most of the posts here I realize that I should be dead right now. I'm really pretty scared at this point because I can't even get in for a test until Monday and my symptoms have been so bad for so long that I'm afraid I may end up in a comma by then. If I have to continue to eat Gluten then my symptoms are going to escalate again until I can't eat for days again and until my stomach swells up and my spleen is so sore I can't walk. My back will ache so bad I won't be able to roll over and my visual migraines will send me into chest pain panic that might not end. I have been living with this for YEARS and it just continues to get worse, but lately it's gotten so bad at times that I literally thought my insides were going to explode out of me!! My leg is so bad I feel like they should amputate it, and my family gets the wrath of my moody outbreaks when I'm on Gluten.

How could I have this for so long and no one ever know it. How come I have to diagnose myself on this one? How come someone didn't do something before now. It might be too late to undue the damadge that's been done by my disease, so how am I ever going to get that back? What do I tell my kids if my organs start to fail? How could I not know I had something like this?

Sorry I know I can't blame myself and I know no one could have known, but I'm just so upset right now and confused that I can't even function on a normal level. Monday could not come early enough for me!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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Take a deep breath! You're going to be fine! I've probably had this forever also. Once you go gluten free, your body begins to heal. You're going to make it!!


Negative biopsy for celiac 1980

Fibromyalgia 1980

IBS 1980

Interstitial Cystitis 1992

Systemic yeast

Diagnosed w/ Chronic Lyme Disease 2000

Diagnosed w/ Chronic babesia 2000

Tachycardia 2001

Asthma 2005

Have had Lyme and babesia for

about 48 yrs.

Began gluten-free July 19 '06

Native TEXAN living in Missouri

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I could be misreading your post, but I'm getting quite a sense of panic from what you've written.

Big deep breath!

You're stuck in a negative 'what if' loop. But you don't know that it's likely to go that way. Heck, you could find yourself in a positive what if loop (what if you get tested on monday and get the results back in three days? what if the results come back with a really obvious answer? what if the dietary test gives you results right away? what if the diet is really easy to stick to? what if you feel better in a few months on the diet?). Or even just a relatively nominal what if loop.

Monday is five days away. You can make it through those five days. It'll be alright. Just take it one day, one hour, at a time, focusing on all the other things you need to do, or can do.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Guest nini

I was 34 by the time I was dx'ed... yeah I was probably nearly dying, but I'm still here... Once you go gluten free (and dairy free if you need to) the damage will begin to heal. It takes time but it does get better. Granted I do still have some residual effects and probably some permanent damage, but I believe in the body's innate ability to heal itself once you remove the offending poison and get on with the business of listening to your body. I'm so much better than I was nearly 4 years ago, and fortunately through my experience my daughter will not have to grow up with a lifetime of illness and being accused of being a hypochondriac or being crazy.

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Ok after reading most of the posts here I realize that I should be dead right now. I'm really pretty scared at this point because I can't even get in for a test until Monday and my symptoms have been so bad for so long that I'm afraid I may end up in a comma by then. If I have to continue to eat Gluten then my symptoms are going to escalate again until I can't eat for days again and until my stomach swells up and my spleen is so sore I can't walk. My back will ache so bad I won't be able to roll over and my visual migraines will send me into chest pain panic that might not end. I have been living with this for YEARS and it just continues to get worse, but lately it's gotten so bad at times that I literally thought my insides were going to explode out of me!! My leg is so bad I feel like they should amputate it, and my family gets the wrath of my moody outbreaks when I'm on Gluten.

How could I have this for so long and no one ever know it. How come I have to diagnose myself on this one? How come someone didn't do something before now. It might be too late to undue the damadge that's been done by my disease, so how am I ever going to get that back? What do I tell my kids if my organs start to fail? How could I not know I had something like this?

Sorry I know I can't blame myself and I know no one could have known, but I'm just so upset right now and confused that I can't even function on a normal level. Monday could not come early enough for me!!

NO!!! You are not too late to heal yourself...as long as you are still alive you can always heal, REMEMBER THAT!! NEVER LET ANYONE TELL YOU DIFFERENT!! I reccommend to take the following supplements (it will cut down your healing time in half) L-Glutamine and Digestive Enzymes. These are natural and you can find them at your nearest health food store. The L-Glutamine has natural amino acids (like fresh fish) that help to actually heal the damage done to your intestines, and the Digestive Enzymes (an enzyme your body is already suppose to be creating which has to do with the good bacteria in your diegestive tract) helps to break down the food, which in turn means less gas and watery diarhea, which in turn means waaayyyyy less pain!! Good Luck and God Bless!! :D

Ok after reading most of the posts here I realize that I should be dead right now. I'm really pretty scared at this point because I can't even get in for a test until Monday and my symptoms have been so bad for so long that I'm afraid I may end up in a comma by then. If I have to continue to eat Gluten then my symptoms are going to escalate again until I can't eat for days again and until my stomach swells up and my spleen is so sore I can't walk. My back will ache so bad I won't be able to roll over and my visual migraines will send me into chest pain panic that might not end. I have been living with this for YEARS and it just continues to get worse, but lately it's gotten so bad at times that I literally thought my insides were going to explode out of me!! My leg is so bad I feel like they should amputate it, and my family gets the wrath of my moody outbreaks when I'm on Gluten.

How could I have this for so long and no one ever know it. How come I have to diagnose myself on this one? How come someone didn't do something before now. It might be too late to undue the damadge that's been done by my disease, so how am I ever going to get that back? What do I tell my kids if my organs start to fail? How could I not know I had something like this?

Sorry I know I can't blame myself and I know no one could have known, but I'm just so upset right now and confused that I can't even function on a normal level. Monday could not come early enough for me!!

Oh yah, and the Digestive Enzymes will also help if your constipated ;)


Gluten Free...negative blood results...absolutely positive diet results.

Dairy Free...absolutely positive diet results.

Egg Free...there goes another one...absolutely positive diet results.

Allergic to Codeine.

"Life is like a box of chocolates...you never know which ones may have gluten in them:)"

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Oh gosh--I know how you feel! It's going to be alright--really :)

I was sick for at least 20 years, and was misdiagnosed over and over.

I was finally diagnosed last year at age 49. I pretty much figured it out on my own, too, before going to a Gastroenterologist and asking if this might be my problem. It makes me mad that no one else ever thought of this, but there's not anything I can do about it now.

I've been gluten-free for about 16 months. It was slow going at first-- and took about 4 months before I began to "turn the corner". Shortly thereafter, my symptoms returned. Through an elimination diet, I discovered I was intolerant to several other foods. I cut the last of those out and have been much better lately.

It can take some time, but you'll begin to heal. The important thing is that you finally know, and can really now do something to reverse the damage and begin to get better. :)

Best of luck on Monday.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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For most, Celiac damage is reversible. There are cases (including cases on this board) where people don't fully recover.

That being said, the vast majority who have Celiac, when they go on a strict 100% gluten free diet, recover. It takes awhile for some to return to 'normal', but Celiac is actually a "great" (haha!) disease to have because it is controllable. How many other autoimmune diseases can you say THAT about?!!!!

We are ALL living proof that you will be ok. How's that ;)

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I have also been sick for a long time and was recently dx'd just before turning 43. What I can tell you is that even at this early stage in the healing process I am noticing changes and improvements. Yes, they may be slow in coming or even seem insignificant, but it's only going to continue getting better. Once you start the diet and the healing begins, even the smallest of improvements can seem miraculous...and with miracles comes hope. You will get better!

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I was dxd at age 55 and I'm doing great! :)


Negative biopsy for celiac 1980

Fibromyalgia 1980

IBS 1980

Interstitial Cystitis 1992

Systemic yeast

Diagnosed w/ Chronic Lyme Disease 2000

Diagnosed w/ Chronic babesia 2000

Tachycardia 2001

Asthma 2005

Have had Lyme and babesia for

about 48 yrs.

Began gluten-free July 19 '06

Native TEXAN living in Missouri

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I agree with the "take a deep breath" advice! Interestingly, I had intermittent enlargement of my spleen, and my doctors would always say, "I have NO idea why it would be like this." Oddly, I mentioned this last month when I went to the allergist/immunologist, and he said, "It was probably when you were producing large amount of antibodies. It stands to reason that when your body is producing that many antibodies, your spleen would HAVE to be enlarged." First doctor I have heard say that . . . and I've seen plenty!

Once I went gluten-free (over 1 1/2 years ago) I haven't had an enlarged spleen since. My guess is that about 6-8 months (sorry, that's the bad news) you will feel like a new person! You will probably feel BETTER prior to that, but it does take awhile for the antibodies to decline. So, relax, take a breath, and know that everything is going to be FINE.

Hugs to you,

Lynne


Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

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Electra, I self-diagnosed myself a year ago, at the age of 52. I was sick from the age of three, and was getting worse and worse.

I am still healing and getting better. Yes, I do believe I've suffered a lot of permanent damage. But even if I get only 50 to 75% better, that would still be a huge improvement. And who knows, I might improve even more than that within a few years.

I believe that you are quite a bit younger than me, and have therefore a much higher chance of getting completely well. It is believed that people who were undiagnosed until their fifties or later may not heal 100% any more, as the damage is too bad, and has been there for too long - but there are plenty of exceptions here as well.

But any improvement is still amazing and seems like a miracle. So, don't panic, five more days are NOT likely going to kill you or cause suddenly irreparable damage, even if it feels that way. You will be fine, you need to focus on that.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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What happened to Electra?? :huh:


Negative biopsy for celiac 1980

Fibromyalgia 1980

IBS 1980

Interstitial Cystitis 1992

Systemic yeast

Diagnosed w/ Chronic Lyme Disease 2000

Diagnosed w/ Chronic babesia 2000

Tachycardia 2001

Asthma 2005

Have had Lyme and babesia for

about 48 yrs.

Began gluten-free July 19 '06

Native TEXAN living in Missouri

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Probably putting kids to bed, and then too exhausted to come back here. I'm sure she'll be back tomorrow.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Sorry I'm still here, but have had a bunch of appts lately and am dealing with school issues for one one my children. Man I just have so much going on right now that I can't keep up UG!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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