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mmalaski

My Life Long Stuggle

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Hi Everyone. 

 

I know that this is a forum for Celiac, but hoping to find some help and support.   My GI diagnosed me with non-celiac gluten sensitivity a few weeks ago because I have most of the symptoms, but tested negative on the Celiac panel and my endoscopy did not show any damage.

 

I am only 26 and struggling with the fact that I will most likely have to eat gluten free for the rest of my life, and not be able to have the foods I like to eat.

 

I was diagnosed at the age of 4 with "IBS" and at always had to go what the doctor called the "brat diet” where I ate only rice cakes and apple sauce for 1-2 weeks.  I have continued the same practice my entire life of "purging" my system at least once a month.  In the last 2-3 years I developed more issues.  Dealing with chronic headaches/ migraines 4-5 days a week, so the doctor put me on medicine to but I stopped taking it since it did not help.  I developed eczema on my arms, legs, shoulders, and back, and would have an upset stomach at least 4 days a week.  I was always tired and fatigued, and would be ready for bed around 9-930. All my doctor could tell me if that I wasn’t a teenager anymore body was finding it "adult state" and that this is just the way it was going to be.  I had just convinced myself that this was normal. 

 

The last 8 months have been especially difficult, and have had frequent sinus infections, yeast infections, extreme pain and bloating in my lower abdomen that made it uncomfortable to sit or move,  and not a day went by when I wasn’t visiting the bathroom 6-8 times through-out the day.  The doctor did all sorts of tests on my liver, spleen, kidney, etc. and everything came back normal, but still had the bloating, pain, and discomfort.  This is the point when he my doctor finally gave me celiac test, and gave me a referral for the GI Doctor.  

 

It took me 2 months to get in for an appointment.  The GI doctor was GREAT! and listened to my entire life story, and at the end without hesitation said it was an obvious case of non-celiac gluten sensitivity and needed to start a gluten free diet asap.  

 

It’s been 3 weeks since I started, and I’ve never felt better!!!  My headaches are gone, by bowel movements have become regular and I only go once or twice a day.   My skin feels better, and has started clearing on my arms and shoulders, with decent improvement on my back.  My acne has also improved greatly.  My side feels much better and can bend over to tie my shoe without discomfort and pain.

 

My wife told me she can see how much better I feel, and commented on how the bags under my eyes have gone away.

 

Is it possible that gluten is the root cause of my issues since I was a child?  It makes me feel crazy that one thing could change how I feel this much, but it’s hard to ignore how drastic the change has been.  

 

Is there anyone else who has had similar issues that were solved by going gluten free?

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Welcome to the board. You found a big group of people who have gone through the same sort of things that you have. Some of us diagnosed celiac and others told they are gluten intolerant.  It is great you are feeling so much better so no matter what label you fall under you are doing the right thing. There are those of us who developed symptoms as children. I was one. There are also folks who don't have symptoms until later in life. 

I hope your GI did an endoscopy not a colonoscopy. The endo goes in from the top and is the scope they use to check for celiac since the damage is found in the small intestine. The colonoscopy requires a 'clean out' prep and they go in from the other end. 

Do be sure to read the Newbie 101 thread at the top of the Coping section as it will have alot of valuable info for you.


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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Welcome to the board!

 

It is pretty bittersweet when you find out that gluten is behind your health problems from a very young age.  On one hand it is exciting to start feeling better and to know there is a treatment, but on the other hand it is frustrating that no one solved the problem a few decades earlier.  There are many of us here who feel that way - you're in good company.

 

I'm glad you are so much better already.  It is a wonderful thing when the migraines go, isn't it?  ;)


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Welcome Mike!

 

Yes, it's pretty common for doctors to mis-diagnose celiac disease patients.  I think they say the undiagnosed celiac percentage is something like 85% now.  Down from 90 or more % earlier.  Many people suffer with symptoms for years before getting diagnosed or just deciding on their own to go gluten-free.  The celiac testing isn't perfectly accurate so there is a chance of false negatives in it.

 

It would be good idea to get your test results from the doctor in writing for the celiac panel and the endoscopy.  You can have the celiac panel redone and see if there is any difference.  Sometimes labs make mistakes too.  There are people on the forum who had negative blood tests but positive endoscopy results too.

 

https://www.celiac.com/forums/topic/110359-many-providers-stray-from-guidelines-for-diagnosis-and-management-of-gastroenterology-endoscopy-news/


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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Welcome Mike!

 

Yes, it's pretty common for doctors to mis-diagnose celiac disease patients.  I think they say the undiagnosed celiac percentage is something like 85% now.  Down from 90 or more % earlier.  Many people suffer with symptoms for years before getting diagnosed or just deciding on their own to go gluten-free.  The celiac testing isn't perfectly accurate so there is a chance of false negatives in it.

 

It would be good idea to get your test results from the doctor in writing for the celiac panel and the endoscopy.  You can have the celiac panel redone and see if there is any difference.  Sometimes labs make mistakes too.  There are people on the forum who had negative blood tests but positive endoscopy results too.

 

https://www.celiac.com/forums/topic/110359-many-providers-stray-from-guidelines-for-diagnosis-and-management-of-gastroenterology-endoscopy-news/

 

I do have a copy of all my tests.   I have a really great GI Doctor, who seemed very up to date on his knowledge.  He told me that even though all my test were negative, that he would still prescribe a gluten free diet.  He said the latest research has proven how little the medical field understands celiac or gluten intolerance and that ~ 20% of people that have the classic symptoms of celiac get a negative result with standard testing. He told me he felt very confident that I was gluten sensitive/intolerant. 

 

I felt very confident that I was being given a credible diagnosis

I had to pester my primary care doctor into giving me a referral for the GI.  He said it was just IBS and that I just had a sensitive stomach, since I would normally have an upset stomach after eating at least once a week.  After 6 months of nonstop visits to the bathroom 6-8 times a day I was done with waiting for it to improve 

 

I am amazed by the difference it has made so far.   I have not had a single upset stomach in weeks, and I feel like I have the same energy levels as the rest of my peers.

 

Coincidentally, my Father has struggled with very similar issues his entire life.  We have both seen the same primary care doctor, which is why I think he always told me this was just the way I was.   My father is now going to see the gastroenterologist. 

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That's great you are feeling better Mike!  It makes sense to have your dad tested.  Celiac is genetic so it tends to run in families.  It seems that the genes for celiac are also related to some other auto-immune diseases.  There are lists of celiac associated diseases on the internet.  So sometimes people with celiac start checking their relatives and find they have auto-immune diseases also.  Things like rhuemetoid arthritis or Hashimoto's thyroiditis disease etc, etc.   Stick around and we will be glad to help you get started and answer questions.  and Merry Christmas! :)


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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