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Did I Finally Find An Answer?


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8 replies to this topic

#1 Claire415

 
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Posted 14 September 2005 - 04:54 PM

Would like some advice regarding my symptoms. As a reference so you know how long this has been going on I'll tell you I am 25 years old now. To me it sounds like Celiac Disease is the answer I've been looking for.

This is probably going to be long, so please bear with me.

Since about age 10 I've had what looks like a rash with bumps on my arms and legs. It itches too. Have tried numerous things to get it to go away with no luck.

At about 13-14 I started have digestion problems. Sometimes when I ate I would get horrible diarrhea, abdominal cramping, gas, bloating, urgency, the works. This has continued to this day.

At 15, after years of chronic strep throat infections, I had my tonsils taken out. This has curbed the infections.

Starting at about 17-18 I was gained wieght fast in spite of having little appetite. Around that time I also started getting bad heartburn and needed prescription meds for it. Had severe depression to the point of suicidal thoughts.

Sometime around 20 I was diagnosed with IBS. This GI doc was not very good, took one look at my chart, saw the history of depression and came up with this diagnosis. About a week after that I was hospitalized with gallbladder attacks and almost had to have it removed.

Around the same time as the gallbladder issues, I started having what sounded like symptoms of fibromyalgia with the painful spots upon touching.

Currently, I have all the symptoms I've listed plus over time I've developed fatigue, my hair falls out, very minor scratches don't heal. I currently have ones that are about 3 months old and are still visible. My skin is very dry also. I'm sure I'm forgetting other things too. Even though I have no appetite, and eat very little, I gain weight. I've even been on Weight Watchers in the past and exercised with no results.

Also, my mother has many of the same symptoms I do. Some of them are even worse. I also have a cousin on my mom's side of the family that has digestive issues as well and has been tested for autoimmune disorders, but I don't know what the outcomes of those were.

What do you guys think, have I finally found what has made me miserable for so many years? Thanks so much for your time.
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#2 aikiducky

 
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Posted 15 September 2005 - 03:48 PM

For what it's worth, I think it sounds like you could well have celiac. It would be worth it to get tested. Sorry to hear you are having so many health problems, and such an unhelpful doctor...

Pauliina
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#3 ravenwoodglass

 
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Posted 15 September 2005 - 03:57 PM

Would like some advice regarding my symptoms.  As a reference so you know how long this has been going on I'll tell you I am 25 years old now.  To me it sounds like Celiac Disease is the answer I've been looking for.

This is probably going to be long, so please bear with me.

Since about age 10 I've had what looks like a rash with bumps on my arms and legs.  It itches too.  Have tried numerous things to get it to go away with no luck.

At about 13-14 I started have digestion problems.  Sometimes when I ate I would get horrible diarrhea, abdominal cramping, gas, bloating, urgency, the works.  This has continued to this day. 

At 15, after years of chronic strep throat infections, I had my tonsils taken out.  This has curbed the infections.

Starting at about 17-18 I was gained wieght fast in spite of having little appetite.  Around that time I also started getting bad heartburn and needed prescription meds for it.  Had severe depression to the point of suicidal thoughts.

Sometime around 20 I was diagnosed with IBS.  This GI doc was not very good, took one look at my chart, saw the history of depression and came up with this diagnosis.  About a week after that I was hospitalized with gallbladder attacks and almost had to have it removed. 

Around the same time as the gallbladder issues, I started having what sounded like symptoms of fibromyalgia with the painful spots upon touching. 

Currently, I have all the symptoms I've listed plus over time I've developed fatigue, my hair falls out, very minor scratches don't heal.  I currently have ones that are about 3 months old and are still visible.  My skin is very dry also.  I'm sure I'm forgetting other things too.  Even though I have no appetite, and eat very little, I gain weight.  I've even been on Weight Watchers in the past and exercised with no results. 

Also, my mother has many of the same symptoms I do.  Some of them are even worse.  I also have a cousin on my mom's side of the family that has digestive issues as well and has been tested for autoimmune disorders, but I don't know what the outcomes of those were.

What do you guys think, have I finally found what has made me miserable for so many years?  Thanks so much for your time.

<{POST_SNAPBACK}>


If you and your Mom aren't celiac I'll eat my hat.  You sound just like me before diagnosis.


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 ravenwoodglass

 
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Posted 15 September 2005 - 03:59 PM

Got the quote last try let me try again, You do sound celiac. Both you and your Mom, don't waste any more time wondering and get it checked out either with a new doctor or by eliminating gluten from your diet. Good luck
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 sspitzer5

 
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Posted 15 September 2005 - 04:01 PM

Celiacs certainly sounds possible to me. Definitely worth checking into.

I'd also get your thyroid checked. Hypothyroidism could account for some of the things you describe too.

Good luck!

Susan
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#6 tarnalberry

 
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Posted 15 September 2005 - 04:12 PM

It could well be celiac. I would encourage you to:
1. get the skin rashes biopsied for DH
2. get a doctor to run the full celiac panel of blood work on you
3. regardless of the results, after all testing is complete, try the gluten-free diet (strictly) for three months

You have nothing to lose by being tested, and potentially, quite a bit to gain.
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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

#7 Canadian Karen

 
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Posted 15 September 2005 - 06:25 PM

I agree that there is a very strong liklihood that you could be celiac, but I do think you definitely need to get your thyroid checked also. Hypothyroidism could cause some of those symptoms as well (also, hypothryoidism is linked to celiac so there is a very good possibility it is a combination of the two that you have - like me!! :P )

If getting tested by a doctor is problematic, I would highly recommend Enterolab. I have heard many good things about their testing and results from posters here.

Either way, you definitely need to get tested to find out one way or another....

Welcome to the board!!! ;)

Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

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#8 Claire

 
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Posted 15 September 2005 - 09:28 PM

What do you guys think, have I finally found what has made me miserable for so many years?  Thanks so much for your time.

<{POST_SNAPBACK}>


Hate to tell you but I think you came to the right place. Do an internet search for Dermatitis Herpetiformis - a skin disorder that is the sole property of celiacs. That is what you seem to be describing. Good luck namesake.
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#9 nettiebeads

 
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Posted 16 September 2005 - 05:47 AM

Your symptoms very well could be celiac disease. Have you been to other websites looking for info? A good one I found in very simple to understand terms is:
http://digestive.niddk.nih.gov
I would find a printout of all the symptoms of celiac disease, highlight all that you have and take it to a dr. Or try the gluten-free diet. That's how I was dx with celiac disease. And the diet challenge is a valid dx tool. Hope you get better soon!
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gluten-free since Oct 1996




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