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My Story... If It Helps Anyone

Robina

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Robina Contributor
Robina
Posted

I believe I have had celiac's since before my children were born 15 years ago...

During my second pregnancy... I was violently ill... throughout the entire 9 months... then about a week after my son was born... I had emergency gallbladder surgery...

After that... my hair started falling out, I was depressed, fatigued, I couldn't lose weight no matter what I did... and I had chronic diarrhea...

Fast forward a few years... I took this class through college... alternative health and healing... I joined a gym, hired a nutritionist, a chiropractor and began eating food closest to its natural state (fruits, veggies, etc.)... started feeling like a million bucks and the weight just started melting off...

then I finished college and started working as a paralegal... started having to eat more convenience foods which meant an increase in my breads and grains... got very sick with flu like symptoms that would not go away... then the weight started coming back as well as diarrhea and edema... but the docs couldn't figure things out... everything kept pointing to my thyroid but all my thyroid tests were "normal"

I was checked for lyme disease... also normal... then my paincare provider tested for thyroid antibodies... which came back high... so I was dx'd w/ Hashimoto's Thyroiditis... I started a Hashi's friendly diet... that helped a little... but I still couldn't lose weight and still felt incredibly drained and sick all the time... ended up leaving my job...

Fast forward two years... I was fed up with being sick, tired and fat... I went back to the gym and started working out vigorously... changed my diet to be mostly protein and veggies... the weight started coming off again... felt wonderful... then I was offered a position at my gym as their new personal trainer... things finally started coming together for me... but... in starting the new job as well as starting my own training biz... I found I needed convenience foods again... started eating Kashi products... and alot of them... 7 whole grains on a mission and all...

Anyway... the GI problems started up again... but this time it was severe constipation... and my hair began falling out rapidly and by the handfuls... you could see my scalp... fatigue also set back in and I was constantly bloated and gassy... the abdominal and flank pain were so bad that it would wake me up all through the night... it was just awful!!! But instead of gaining weight this time I began losing... rapidly..

Went to this doctor and that doctor... had test after test... xray, scans, you name it I had it done... they all thought it was either cancerous tumors, or hormonal issues... nada...

Not once did the doctors have the presence of mind to test for celiacs... nor was I ever referred to a GI... although one doctor wanted to put me on amitryptolene(sp?) to relax my stomach muscles...

I wasn't settling for the "it's all in your head" or "it's stress" lines of bs and I certainly wasn't just going to start taking random meds... I researched diligently on the pc... I also went to an acupuncturist (who helped me with my Hashi's before) and when the constipation was so severe that I was literally full of s--t... I went to a colonic hydrotherapist... who is also a nutritionist and an RN... anyway... she advised me to eliminate grain from my diet... and to start drinking green smoothies... I did as she advised and wouldn't ya know... the GI upset totally disappeared...

One night shortly after... my husband and I had chinese food... well I was up and down all night with GI pain and upset... so I did some research using all my test results, what the CHT told me, etc... and google kept bring me to celiac links... which is how i found this board...

when I started reading about all the symptoms everyone experienced... the light went on... I immediately went through my house... my pantry... my bathroom... EVERYTHING... and boxed up all products that either had gluten ingredients... or... the ingredients were questionable... and I sent the boxes off to my mom...

I replaced all my food with gluten-free foods that I found out about on here... I replaced my make up, my skincare, my haircare... everything...

Since doing all this I haven't had any GI issues... my hair loss (as I said) continues... but has definitely tapered off... and... I have new healthy growth coming in according to my hairdresser...

oh... I also used to get wicked bad acne and my face has cleared up completely...

Now... I have never had an official dx for celiacs... but... based on my research, my symptoms, etc... it just seemed like all the pieces of the puzzle fit... and... given the fact that my mystery symptoms have either greatly reduced or disappeared since going gluten free... I would say that an official diagnosis at this point would be moot... not to mention that traditional western medicine has failed me so much in the past that I wouldn't trust anyone in the field to give me a straight answer... besides... doctors are trained to treat symptoms with pharmaceuticals... not to find and treat the root cause of symptoms...

Anyway.. just thought I'd share my story in hopes that it may help someone else out there...

as an aside... I am treating with practitioners... just holisic ones... I just don't have faith in regular doctors anymore...

It's still very early on for me in this thing... and I know I have a long road ahead... but I want to thank all the people on this board for sharing their wisdom and being so super friendly and helpful... I couldn't have made it to this point without you guys/gals...

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Nantzie Collaborator
Nantzie
Posted

Thank you for sharing your story. It's amazing isn't it? All of a sudden, everything adds up. Even the stuff you didn't know was related to each other.

Welcome to the board!

Nancy

Robina Contributor
Robina
Posted
  • Author
Thank you for sharing your story. It's amazing isn't it? All of a sudden, everything adds up. Even the stuff you didn't know was related to each other.

Welcome to the board!

Nancy

No prob... there's so much more to it than what I wrote but I'd be here typing still if I didn't try to trim it down a bit... lol... Yeah... it is amazing... and kinda scary... I don't know where I'd be if I just completely put my faith in the docs and didn't try to find things out on my own or pursue alternative treatments... I really feel bad for those out there who are still suffering and undiagnosed... almost makes me want to cry...

Ursa Major Collaborator
Ursa Major
Posted

Thanks for sharing your story, Robina. Sadly, it's not an unusual story. It took me 52 years to figure it out, my doctors were just as clueless as yours. My primary care doctors are now my chiropractor and a naturopathic doctor. My regular GP is only needed to order tests and to give me referrals, as here in Ontario you can't see any specialists unless you have been referred by a GP.

Nantzie Collaborator
Nantzie
Posted
No prob... there's so much more to it than what I wrote but I'd be here typing still if I didn't try to trim it down a bit... lol... Yeah... it is amazing... and kinda scary... I don't know where I'd be if I just completely put my faith in the docs and didn't try to find things out on my own or pursue alternative treatments... I really feel bad for those out there who are still suffering and undiagnosed... almost makes me want to cry...

I know what you mean. Thank God for the internet.

Seriously.

If it wasn't the ads on the sides of search pages, I never would have heard about celiac. It's scary where I would have been.... and where most of us here would have been without search engines... {shudder...}

When I first went gluten-free, I felt like I had a full-body transplant. It was a very weird, surreal experience. So that disbelief, pinch-me, scared I'm going to wake up in pain or GI distress feeling or worry, is totally normal. It's such a dramatic, and nearly completely unexpected improvement that it's normal to walk on eggshells for a while.

I know what you mean about wanting to cry for all the people out there who are in pain and don't know what's wrong. I'm sure you've thought through your family and friends and can spot the potential celiacs.

My philosophy on it is to show them how easy it is, which you may not know yet... Probably a good half of my family, and even a lot of my friends have some sort of stomach issue. Even my brother-in-law was talking to me tonight about it. He has moderate stomach problems, and his son has mild stomach issues as well as ADHD. He has, of course, seen me go from being so miserable to being happy and strong. He was asking me about it a bunch today, and I told him that once you found gluten-free bread that you liked, everything else was easy. I'm thinking that at some point he might try it just for weight loss, which may lead him to figure out if it helps his stomach. I'm hosting Christmas Eve this year, which will be 100% gluten-free. I'm using that meal/occasion as an outreach to all those potential celiacs/gluten-intolerants in my family to show them that they can still have bread, pie, cake and cookies if they want to just try the gluten-free diet.

Well, as you can see, I also have a persistent case of the on-and-on-and-on's. :lol:

I just love it when new people come and everything all of a sudden makes sense for them.

Nancy

spunky Contributor
spunky
Posted

Thank you for sharing all of that. I'm glad you finally found the answer. I am self-diagnosed too, and I don't really want any doctor's diagnosis or assessment of the situation. I'm feeling better and better all the time, now, almost 9 whole months totally gluten free. It's a sorry state the way doctors can't seem to do anything but steer people in the wrong direction on this and get them all medicated with dangerous drugs that do absolutely nothing for a person's health.

Thank goodness for the internet. Knowledge is power. We all have to heal ourselves, apparently!

Guest nini
Guest nini
Posted

welcome to the board! I'm so glad you found the strength to dx yourself, I wasn't that brave... when I first suspected celiac and went gluten-free I let my ob/gyn talk me out of it... took another almost 4 years before I was accurately dx'ed and by then I was almost dying... I have also lost faith in the medical community and prefer to deal with alternative health care practitioners. My current medical dr. doesn't do diddly squat for me! But she is supportive of my dx and making sure I stay gluten-free, and monitoring my health so I'll keep her for now.

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Guest ~jules~
Guest ~jules~
Posted

Welcome to the board. :D Many of us have walked down that path of confusion with celiac, I'm glad you figured it all out, and your response to the diet has given you some answers also. I really consider myself lucky that I only suffered for about 2 years. When I got it I got it bad though, I went from almost 140 lbs, to 110 lbs in 3 weeks, and had gi issues every day. I kept up with the doctors, only giving in once to stay home and suffer for a few months. With persistence I finally got my dx. Good luck to you, if you need anything the board is always good about helping out with whatever you need.. Julie

Looking for answers Contributor
Looking for answers
Posted

It's so great that you took your health into your own hands . .and look, you got your answers. Good for you. I hope for your swift recovery!

georgie Enthusiast
georgie
Posted

Thanks for sharing the story. It was certainly an eye opener. And I thought only Hashis was hard to dx :o Why do Celiacs have to change m/up, and shampoos ?

Anne AMP Apprentice
Anne AMP
Posted
Thanks for sharing the story. It was certainly an eye opener. And I thought only Hashis was hard to dx :o Why do Celiacs have to change m/up, and shampoos ?

Don't know. Could it be the rash associated with celiac disease or does it actually cause GI symptoms?

Robina Contributor
Robina
Posted
  • Author
Thanks for sharing the story. It was certainly an eye opener. And I thought only Hashis was hard to dx :o Why do Celiacs have to change m/up, and shampoos ?

Well for me... I had always had this weird skin and scalp sensitivity... I would get really itchy bumps randomly on my head and my face... never linked it to celiac's... but after I changed my diet I had read on here somewhere that since gluten can be absorbed through the skin... and since it causes an autoimmune reaction (not just a digestion issue) and is linked with DH... I decided to change a few of my products to see what happened... well my scalp stopped itching (the hair shed also seemed to die down a little) and I stopped breaking out... so... I figured I was having a reaction to the gluten in my personal care products and switched everything over...

bradensmom14 Newbie
bradensmom14
Posted

Was wondering if anyone knew..do you have to test positive for allergy to have celiac disease. Curious because I've heard it's often misdiagnosed as milk allergy or reflux in children and my son has both but according to allergy test was negative for any allergies accept milk and soy.

nikki-uk Enthusiast
nikki-uk
Posted
.do you have to test positive for allergy to have celiac disease.

First of all welcome to the boards!!

My son was recently diagnosed with celiac disease but he has no allergies

Coeliac disease is an intolerance as opposed to an allergy.

That's not to say alot of people here don't suffer from both but they are not mutually exclusive. :)

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