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Validation-Finally. Genetic Testing Positive

IrishHeart

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IrishHeart Veteran
IrishHeart
Posted

I just want to thank all of you for your incredible support, encouragement, advice and friendship for the last 4 months. :) You may never know how much it has helped to validate me and my long struggle for answers to a long, perplexing health nightmare, but it has been invaluable. I am so grateful for this forum and the wealth of information it provides. No doctor, book or website ever adequately explains the REAL life experience of dealing with gluten intolerance and the widespread havoc it causes and what really needs to be done to start on a healing path. Just being told "don't eat gluten" does NOT cover it.

I tested NEG on blood work ( I was gluten-free at the time and the doctor told me it would "not impact the result" :blink:) and that the only thing it showed was soy intolerance and it was okay to go ahead and eat gluten! :blink: I never had the biopsy because a negligent GI doctor did the endoscopy 2 years ago and failed to biopsy for reasons he never explained. :angry:

No one took my drastic weight, hair and massive muscle loss seriously. (it's "just IBS ") The horrible joint/bone and burning nerve pain. (it "may be " fibromyalgia) Miscarriages, years of insomnia, migraines, anxiety (it's just "stress")... I suffered dozens of horrifying and frightening symptoms and related conditions(some I have described in various posts or in personal messages, so I'll spare you all the gory details once more) and some I fought hard for testing these past 2 years to reveal: both B-12 and Folate deficiency anemia, osteopenia, Vitamin D def., pelvic floor dysfunction, neuropathy, dental enamel defects...and on and on. I was so lost in space and pain for the last 3 years, I thought I'd rather be dead than live like this, but I just would not give up because I want to live and live fully! My loving husband gave me the strength to keep going, and I just kept researching and reading (as best as I could comprehend) because I KNEW something was keeping me ill and in chronic pain. I refused to accept my fate (as some suggested) and "buy a scooter " to get around. :blink:

My health history (and my Dad's) is a laundry-list that screams "CELIAC!" but I went LONG undiagnosed, even though I repeatedly asked if it was a gluten problem. My whole family (aunts, uncles, cousins, siblings)is ripe with autoimmune diseases (diabetes, gall bladder, rheumatoid arthritis, crohn's, MS, asthma, allergies, thyroid disease, cancer, etc.) and my Dad suffered anemia, unexplained blood loss requiring frequent transfusions, H. pylori and ulcers, constipation and/or diarrhea, GERD, kidney disease and severe itching skin-- but even those factors were never considered as part of evaluating me for Celiac disease. I thought I would die before anyone figured it out--that's how bad I was. My worst symptoms --especially the burning skin and neuropathy -- appeared at the same time he died in February 2008.I provided all of this information over and over again in hopes someone (and I saw many doctors, mainstream and "alternative" and "functional") would help me figure this out, but no one did. We spent THOUSANDS of dollars on tests, PT, etc...but my gastro symptoms continued and I dwindled down to nothing and I live in pain from head to toe 24/7. No drugs help.

I figured it out myself. My primary care doctor, after years of trying to help me by symptom- treating and sending me to specialists, finally said in November 2010, after I went back ONE MORE TIME and told him I KNOW what this is...."OMG! you are right!" His own children have celiac and yet, my symptoms did not click with him? :angry::blink:

And so, finally, I managed to get a genetic test run and yesterday, after so many years, I received validation. The double genes from both of my parents.

Now, I will inform my mother and then, my HUGE family so they can decide what to do with this information. I hope they don't "shoot the messenger" :lol: they are already resistant to my suggestions that this is familial.

I cannot tell you how relieved I am to know that my gut instincts (pun intended) were right all along and that going gluten-free saved my very life. Hubby and I actually high-fived and shouted for joy when I read those results. And then, I sobbed my heart out --not for me, but for my Dad. If only we had known.

I can't change the past--his or mine--but I can change my future and hopefully, if they listen to me, help my family. I have felt better this past week (4 months gluten-free) than I have in years and even though I have a long road ahead of me still with grueling physical therapy and regaining muscle mass and strength (and hopefully, my hair will grow back!)...this gradual recovery from that hell-filled rabbit hole I fell down was all the proof I really needed anyway.

but, validation sure is sweet. :D I have some "I told you so's!!" to spread around..and I will, in due time... B)

Thanks again !!--you guys are the best!

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cahill Collaborator
cahill
Posted

Your journey is way to common among us. :( I am sorry your journey has been so difficult but you have prevailed .

You are on your way to health and that is PRICELESS. :D

My hope is that as WE become more educated so do our DOCTORS.

Validation is an AMAZING thing isnt it? B)

I hope you have better result with your family than I did. The members of my very large family that were not receptive to celiac's/gluten free before my diagnoses are still not,even with my diagnoses :( I have given them the information and what they do with it is totally on them now, but it saddens my heart to know the suffering that many of them will endure because they cant/wont go gluten free :(

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IrishHeart Veteran
IrishHeart
  • Author
Posted

Your journey is way to common among us. :( I am sorry your journey has been so difficult but you have prevailed .

You are on your way to health and that is PRICELESS. :D

My hope is that as WE become more educated so do our DOCTORS.

Validation is an AMAZING thing isnt it? B)

I hope you have better result with your family than I did. The members of my very large family that were not receptive to celiac's/gluten free before my diagnoses are still not,even with a diagnoses :( I have given them the information and what they do with it is totally on them now, but it saddens my heart to know the suffering they will endure because they wont even consider testing and cant/wont go gluten free :(

First of all, I apologize--I must have missed somehow that you got your diagnosis, chill!! That's great news...right!? I am happy for YOUR validation! Feeling better??

Second, I have already had resistance from some...but perhaps, they will see the light. We can only try. THEY are the real reason I did the test. For them, their children and grandchildren.

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cahill Collaborator
cahill
Posted

First of all, I apologize--I must have missed somehow that you got your diagnosis, chill!! That's great news...right!? I am happy for YOUR validation! Feeling better??

Second, I have already had resistance from some...but perhaps, they will see the light. We can only try. THEY are the real reason I did the test. For them, their children and grandchildren.

I was JUST diagnosed April 18th by my new GI,,, amazing woman that she is :) ,,, My diagnose only took 40+ years to get <_< I cried for about a week straight,alot of emotions bouncing all over the place ,

My children and grandchildren are the main reason I even tried to get an firm "official" diagnoses. My hope is that my diagnoses with make their path with doctors a whole lot easier.

Congratulation Irish :)

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IrishHeart Veteran
IrishHeart
  • Author
Posted

I was JUST diagnosed April 18th by my new GI,,, amazing woman that she is :) ,,, My diagnose only took 40+ years to get <_< I cried for about a week straight,alot of emotions bouncing all over the place ,

My children and grandchildren are the main reason I even tried to get an firm "official" diagnoses. My hope is that my diagnoses with make their path with doctors a whole lot easier.

Congratulation Irish :)

Right back at ya, Chill! ;) I know you have struggled to get answers as well.

Yeah, I am giddy and crying at the same time!

Sadly, I never carried to term :( (I tried many times)and even fertility treatment failed. They did not test for celiac back in the 90's as they do now when there are so many miscarriages.

I mostly did this for my siblings and their children and over my 32 cousins--both sides--with large families as well...so they can at least know it is in our genes and perhaps avoid further illness and live long, healthy lives! :D

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eatmeat4good Enthusiast
eatmeat4good
Posted

Wonderful news IrishHeart!!!

You are inspiring. Good for you for letting your relatives know. All you can do it try.

So glad you got the validation. And that you are well into your recovery. Hope your recovery is smooth from here on!

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IrishHeart Veteran
IrishHeart
  • Author
Posted

Wonderful news IrishHeart!!!

You are inspiring. Good for you for letting your relatives know. All you can do it try.

So glad you got the validation. And that you are well into your recovery. Hope your recovery is smooth from here on!

thanks, my meaty friend!! ;)

You and I know how much our struggle has cost us, but we both are on our way to good health! thanks for the many chats and encouragement!

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