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Finally Diagnosised With Celiac's


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7 replies to this topic

#1 a1956chill

 
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Posted 19 April 2011 - 11:24 PM

This past week has been an extremely emotional one.
After 40 + years of dealing with doctors, trying to find out what is wrong with me FINALLY some answers.
Maybe because my physical symptoms have gotten so bad that they cant ignore them, or maybe doctor are finally understanding more about auto-immune disease, what ever the reason,,,I finally have ANSWERS

I have in the past 40+ years dealt with soooooo many different doctors, most of them just wanted to throw pills at me,some unnecessary medical procedures ,misdiagnoses or diagnosing simple NON-Diagnosis like IBS,,(IBS is a symptom not a diagnoses IMO ) most of them thinking I was crazy. A couple of them actually said I was crazy.

Over the past year I have started getting copies of my blood work, CT scans,ER reports ect... EVERYTHING!! Then I INSISTED that my primary care doctor refer me to an allergist, an endocrinologist and a GI doc.

The allergist was not a very good doc and his office was very poorly run. The whole experience was not good. After blood testing I was called and told the all the results were negative. BUT after I insisted on receiving copies of the reports and reading them the reports stated I was in fact highly allergic to Eggs and Almonds.

The endocrinologist was a positive experience from the start.
She took the time to talk to me and ACTUALLY heard what I was saying. After the blood work was done, I was called and told I tested positive for Hashimotos .I havent gotten copies of my blood work yet,, she tested for a whole lot of things,, but I will get them during my follow up appointment but they did fax the reports to my new GI doc.

The GI doc ,
I made sure I had copies of everything either with me or faxed to her, every CT scan report,every ultrasound report,blood tests, post op reports, everything I could get copies of I did,,, the poor woman had a 4 inch thick chart on me before she even saw me :lol:
The first thing she said to me after introducing her self was that she did have a chance to look over my file :D , she ACTUALLY read the reports :D
She spent over an hour with me,, an hour that will make a difference in the lives of my children and grandchildren .
Based on my medical history,symptoms, testing, dietary response and physical exam she diagnosed me with gilbert-meulengracht syndrome and Celiac's
As I was getting ready to leave I told her that she had given me more answers in that one hour than I had been able to get in the past 40 years.She said that was because she had the benefit of having all the information in front of her.

MY emotions are all over the place,grief,sadness,anger,relief ect...I cant stop crying ..

I am grateful that my children and grandchildren now have the benefit of my diagnosis.
I am grateful to all of you and this forum. The knowledge and support I have received in these forums is PRICELESS!! With out the knowledge and information shared in these forums I would not have known the questions to ask or what direction to go . You have helped me give my children and grandchildren the greatest gift possible,KNOWLEDGE .

Thank you all :wub:
  • 1

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


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#2 ravenwoodglass

 
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Posted 20 April 2011 - 02:40 AM

It sounds like you finally found a good doctor. Now you can heal and encourage the rest of your family to be tested. I hope things improve for you very soon.
  • 0
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)

#3 keithceliac2010

 
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Posted 20 April 2011 - 05:23 AM

I am happy for you. Your feelings are similar to those which I had 2 months ago. I went 30+ years being misdiagnosed and I don't have much faith in the medical system. In fact, it was my wife, who spent countless hours researching my symptoms online; she was the one who diagnosed my celiac-NOT A DOCTOR!! Yes, I had the same feelings you did as well. Some anger at the medical community but then I decided that I am not going to focus on the negative emotions. Instead, I made a point to focus on the fact that I am getting healthy now and it is still not too late to enjoy the rest of my life and spend more quality time with my loved ones. Try to fight through the negative emotions and focus on the positive outcome that has finally come your way. In the short 2 months that I have been gluten free, all of my physical and mental ailments have completely vanished and I am a whole person for the first time in my life. Best of luck in your journey and your newfound life!!
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#4 hnybny91

 
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Posted 20 April 2011 - 08:17 AM

I was very angry when I figured out what was wrong with me. After reading a site on celiac disease I had practically every symptom and was very angry that not one doctor I had seen over the last four years had put the pieces together. I went gluten free on my own and was feeling like a normal person again after only one week. It took me months not to feel angry every day over it. Congrats on finally having a diagnosis and welcome to the boards :)
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#5 Roda

 
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Posted 20 April 2011 - 08:31 AM

Oh C, I'm so glad you got some answers!! I've been thinking a lot about you lately. Hopefully your extended family will take this information seriously and seek testing. I know some of your siblings would probably benefit. As for your children/grandchildren this is good to know also. Is the gilbert-meulengracht syndrome hereditary? For anyone that is curious, a1956chill and I are from the same very very small hometown and found out about it after I answered one of her topics! Pretty cool to meet on here and I'm lucky because I feel we are connecting as friends. :)
  • 0

Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#6 a1956chill

 
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Posted 20 April 2011 - 12:39 PM

Thanks everyone,, my emotions are still all over the place.


Oh C, I'm so glad you got some answers!! I've been thinking a lot about you lately. Hopefully your extended family will take this information seriously and seek testing. I know some of your siblings would probably benefit. As for your children/grandchildren this is good to know also. Is the gilbert-meulengracht syndrome hereditary? For anyone that is curious, a1956chill and I are from the same very very small hometown and found out about it after I answered one of her topics! Pretty cool to meet on here and I'm lucky because I feel we are connecting as friends. :)

yes R it is hereditary ,, but I dont have much hope the my extended family will take any of this seriously , I know you understand how that saddens me . I will try my best to get them to be tested .
  • 0

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#7 Roda

 
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Posted 20 April 2011 - 06:33 PM

Thanks everyone,, my emotions are still all over the place.



yes R it is hereditary ,, but I dont have much hope the my extended family will take any of this seriously , I know you understand how that saddens me . I will try my best to get them to be tested .

Yes I do understand. As the old cliche says "you can lead a horse to water, but you can't make them drink." I'm done telling my brother even though it bothers me. I know he has it too.
  • 0

Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#8 eatmeat4good

 
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Posted 21 April 2011 - 03:24 PM

That is so good to hear that you finally have answers. I so hope you will feel good now and continue to heal. My heart breaks every time I read one of these "I was sick for 30 or 40 years"...because I was too. But it is so good to know that you are going to be OK. Here's to your pereseverance!!!
  • 0
Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates




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