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Just When I Thought I Was Doing Good


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7 replies to this topic

#1 AVR1962

 
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Posted 15 May 2012 - 09:08 PM

Don't know if Fabry has any connection to celiac. Received my tests back and I have borderline results and because of the symptoms I have been displaying I am being sent to a genetic clinic for further testing. Fabry is a genetic disease that lacks proper enzymes to break down fats in the body like it should. These fats build up in the body and cause brain damage, kidney failure, strokes, and nerve damage. This was not easy news to receive as I had been doing so much better on my no grain, no sugar diet. I am trying to focus on the positive and realize that there are things docs can do about this to help. I guess what gets me is knowing that it is systemic but that doesn't mean that something won't get me first. The average life span for someone who is diagnosed in childhood is 41, average life span for someone who has older age onset like myself possibly, is 74, so that is not bad. We me luck guys, I could REALLY use the support right now!
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

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#2 pricklypear1971

 
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Posted 15 May 2012 - 09:16 PM

Well, I'm definitely thinking of you.

I'm very saddened to hear this is where you are at right now.

I will pipe up and say if you are doing better you should keep doing what you're doing - because better is better.

I will be thinking of you and hoping for the best.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 lovetapioca

 
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Posted 16 May 2012 - 12:43 AM

I just happened to run across your post. I had also just posted tonight earlier. What caught my eye was the what you had written about yourself & conditions, at the bottom of your post. I thought, wow, you have really dealt with a lot. Then, when I read the body and subject of the post itself, my heart just went out to you. You may be feeling down, obviously, and for good reason, but you are definitely an upbeat type person. Rereading thru your post, you are a real encouragement and fighter! Yes, there are times when everything looks bleak but sometimes when the attitude stays up, sometimes things turn out better than expected, or if not, then the trials we have are at least easier to bear and for others around us to bear. I was diagnosed with MS 22 years ago. I had actually had it since I was a child, but just never had an attack that caused enough damage that it could be diagnosed before that. I was told all of the fears of wheelchairs, how I would age so much faster, have a shorter lifespan, etc. I really gave up on myself for a while but then I got upset and decided I was thru with living like a sick person. So, I have been a happy, healthy person with MS for the last 20 years. Educating myself with what I needed to know to deal and recognize the problems I was having really helped. But now, at age 57, I don't look like the 87 year old I was told I would look like. I enjoy life and I want to continue to enjoy every minute of it. I square dance with people in their 80s that have much more life than many people I know that are in their 40s. It is all in their attitude. It is good to see you reaching out for information. I also was at a point where I was holding my own. Then some extreme stress kicked in and I had a major MS attack. Now a bunch of other things hitting at once. But we can't give up. You encouraged me. We just keep learning and helping each other and really living life. Thru it all, we'll all keep cheering each other along. Everyone can do more when they are being cheered on. Keep posting on how you are doing and what you find out. Your good attitude will no doubt help others along the way like it did me tonight!
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#4 Di2011

 
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Posted 16 May 2012 - 12:51 AM

Fabry is a new one for me so I will google to learn a bit more about it. You have been such a contributor especially in my early days with my own problems! One more hurdle but eventually the hurdles must end or at least get lower in height - hopefully not at 71. Another condition to add to my/our "chicken or egg - which came first" (ie what is the underlying cause vs symptoms). Thinking of you.
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#5 Bubba's Mom

 
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Posted 16 May 2012 - 05:09 AM

Don't know if Fabry has any connection to celiac. Received my tests back and I have borderline results and because of the symptoms I have been displaying I am being sent to a genetic clinic for further testing. Fabry is a genetic disease that lacks proper enzymes to break down fats in the body like it should. These fats build up in the body and cause brain damage, kidney failure, strokes, and nerve damage. This was not easy news to receive as I had been doing so much better on my no grain, no sugar diet. I am trying to focus on the positive and realize that there are things docs can do about this to help. I guess what gets me is knowing that it is systemic but that doesn't mean that something won't get me first. The average life span for someone who is diagnosed in childhood is 41, average life span for someone who has older age onset like myself possibly, is 74, so that is not bad. We me luck guys, I could REALLY use the support right now!

I hope they find you don't have it, but at least if you know about it, it can be treated? It's a hard pill to swallow for sure! :o

You're a tough cookie..and you've been through a lot. I have no doubts that if it turns out to be Fabry, you'll kick it's ass! That shortened life span is just an average, and as you know..there are people that don't do anything to help their conditions (making the average lower), and there are those like you who educate themselves and deal with things head on (making it higher).

Please let us know what they find out with the genetic testing/treatment plan?
Fingers crossed for you.
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#6 AVR1962

 
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Posted 16 May 2012 - 09:15 PM

I just happened to run across your post. I had also just posted tonight earlier. What caught my eye was the what you had written about yourself & conditions, at the bottom of your post. I thought, wow, you have really dealt with a lot. Then, when I read the body and subject of the post itself, my heart just went out to you. You may be feeling down, obviously, and for good reason, but you are definitely an upbeat type person. Rereading thru your post, you are a real encouragement and fighter! Yes, there are times when everything looks bleak but sometimes when the attitude stays up, sometimes things turn out better than expected, or if not, then the trials we have are at least easier to bear and for others around us to bear. I was diagnosed with MS 22 years ago. I had actually had it since I was a child, but just never had an attack that caused enough damage that it could be diagnosed before that. I was told all of the fears of wheelchairs, how I would age so much faster, have a shorter lifespan, etc. I really gave up on myself for a while but then I got upset and decided I was thru with living like a sick person. So, I have been a happy, healthy person with MS for the last 20 years. Educating myself with what I needed to know to deal and recognize the problems I was having really helped. But now, at age 57, I don't look like the 87 year old I was told I would look like. I enjoy life and I want to continue to enjoy every minute of it. I square dance with people in their 80s that have much more life than many people I know that are in their 40s. It is all in their attitude. It is good to see you reaching out for information. I also was at a point where I was holding my own. Then some extreme stress kicked in and I had a major MS attack. Now a bunch of other things hitting at once. But we can't give up. You encouraged me. We just keep learning and helping each other and really living life. Thru it all, we'll all keep cheering each other along. Everyone can do more when they are being cheered on. Keep posting on how you are doing and what you find out. Your good attitude will no doubt help others along the way like it did me tonight!

Your journey is very uplifting, thank you for sharing. I am really trying!
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#7 AVR1962

 
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Posted 25 May 2012 - 02:02 AM

Did my genetic testing this week, 6 weeks and I will have an answer. I have done some reading since and have found that some people have been misdiagnosed with celiac when really they had Fabry's Disease.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#8 lovetapioca

 
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Posted 25 May 2012 - 11:25 PM

Keep us posted on your test results.
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