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wolfee

Scared Will I Recover 100%

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Hi just joined the forum as I have had a biopsy that indicates celiacs and am awaiting blood test result to confirm. It has taken me nearly 2 years to convince my doctor that constant anaemia pain in side and sickness needed looking into. I recently spoke to someone whose friend has celiac (big mistake maybe) and she has told me about how if you dont remain totally gluten free the particals of protein attach themselves to other organs and then healthy organs come under attack. My fear is that as it has taken so long to get this far could I have more damage than a mild corrosion of my small intestine (small area)? I hope Im not scareing anyone else out there but I dont want to discuss this information with parents or husband and make them feel bad and sorry for me. can any one offer any advise thanks wolfeex

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Hello and welcome!!

Well I've been misdiagnosed for 12 years and after 7 months of gluten-free diet my villy looks great (I still have symptoms and I am not completely well but I've been glutened some times....) . There are members here that are misdiagnosed for 40 years and they are just fine now. I've never heard of that thing you are talking about, maybe someone else has.....but I know for sure that there are so many of us who were misdiagnosed for many years and now everything is fine. Of course you will not expect to get well from one day to another, but eventually you will!!!

Read the articles in the forum, ask as many questions as you need to, follow the diate, take supplements if you need to, have a balanced diet, and get yourself a doctor you can trust and everything will get better.

Kisses,

Meline


Celiac September 2007

Graves disease June 2008

Candida overgrowth / started treatment November 2008

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Woolfee, welcome.

I am like Meline and have never heard of what you were told. So hopefully that is just one less thing to worry about.

I was only diagnosed with coeliac two and a half years ago, when I was 48. I was getting sicker and sicker and I felt I was on my way out, as I was just so unwell. I have come a long way to getting better, the feeling of my going to die dissappeared as my health started coming back. It doesn't happen overnight, and it can be frustrating, but eventually you will get there. I admit I'm not totally there, but I have improved beyond what I thought I would. I'm happy where I am.

Cathy

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Welcome to the board. I think perhaps the person you spoke to was talking about what would happen if you don't go gluten free. If you need to be gluten free and you are not then yes the antibody effect can attack pretty much any organ in your body. The best reason there is for getting yourself gluten-free.

There are many of us who it took decades to diagnose, even those of us who have already had other organs impacted have seen some great relief once the antibodies have cleared our system. Folks like myself who were close to death because of the lack of a positive blood confusing the diagnosis process.

The danger is in NOT following the diet and your risk for other autoimmune disease and cancer will go down with every day your gluten-free. Research has shown that after 5 years gluten-free our GI cancer risk, for example, goes down and is close to the same as nonceliacs.

You are in one of the best places for info and support, please ask any question you need to and do feel free to vent frustrations when needed.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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Thank you all so much you have made me feel alot better already,. I live in England and didnt know anyone with celiacs so this forum is a gold mine. speak to you all soon take care xxx PS hope you all see this as i am a bit computer illiterate

Hello and welcome!!

Well I've been misdiagnosed for 12 years and after 7 months of gluten-free diet my villy looks great (I still have symptoms and I am not completely well but I've been glutened some times....) . There are members here that are misdiagnosed for 40 years and they are just fine now. I've never heard of that thing you are talking about, maybe someone else has.....but I know for sure that there are so many of us who were misdiagnosed for many years and now everything is fine. Of course you will not expect to get well from one day to another, but eventually you will!!!

Read the articles in the forum, ask as many questions as you need to, follow the diate, take supplements if you need to, have a balanced diet, and get yourself a doctor you can trust and everything will get better.

Kisses,

Meline

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Hi just joined the forum as I have had a biopsy that indicates celiacs and am awaiting blood test result to confirm. It has taken me nearly 2 years to convince my doctor that constant anaemia pain in side and sickness needed looking into. I recently spoke to someone whose friend has celiac (big mistake maybe) and she has told me about how if you dont remain totally gluten free the particals of protein attach themselves to other organs and then healthy organs come under attack. My fear is that as it has taken so long to get this far could I have more damage than a mild corrosion of my small intestine (small area)? I hope Im not scareing anyone else out there but I dont want to discuss this information with parents or husband and make them feel bad and sorry for me. can any one offer any advise thanks wolfeex

Hi, 2 years is really a short amount of time when it comes to celiac disease. I was just recently diagnosesed, too... If my trigger was the mono I had at age 17 ... I have had celiac disease for 50 years... I admit ... I did learn during that time to eliminate most white wheat from my diet... really baked goods... I thought I had a reaction to baking oils... but I still consummed a great deal of gluten. I am not sure if it is true of all doctors with all patients ... but my doctor insisted on a full battery of blood tests and a liver function test..and tests for cancer of small bowel as well as lower GI.. and on and on.... those were all "clean or clear". At age 68 I may never full recover... but I have lived a very full active life and I do not feel that I have one foot in the grave.... What I have noticed is that I still have good days and bad days.... on my good days I feel so much more pain free and energetic .... I must be careful not to over do.

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I'm not sure how old you are Wolfee, but we all have to be realistic. Expecting 100% improvement is asking a lot. I was around 45 when I found out about celiac disease and I had been very sick for over 20 yrs, and who knows how long I had silent celiac before that. My sister was diagnosed with celiac disease then too, and she was vitamin deficient as a young child, so we are sure she was celiac, even then. So, I figure, it's asking a lot to expect a lifetime of damage to completely repair, yet I am thankful for the repair that has occured. I am thankful that I have reduced my chances of stomach cancer, I am thankful I have my life back--I am thankful for all the changes that have occured since going gluten free. Now, 8 yrs later, my life is completely different. You can't expect 100%, do expect major improvements though. You will start feeling better, you will feel the differences....give yourself time. Never let setbacks get you down, they happen to all of us, just bounce back, and remember, tomorrow is another day!!


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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