Our Journey's To Gluten Free

[darlindeb25]

morning---well, here goes---I have always had tummy troubles--as a child I would get carsick--my mom always said that I had to have a change of clothes with me when traveling--my sister is celiac too and I remember as a child, she would eat dirt--my mom finally took her to the doctor to find out why and, of course, it was a vitamin defiency--she was given a liquid to drink everyday that we lovingly called "bug juice"--hehe, she hated it--I now wonder if I was a very hyper child too--my mom told me how naughty I was as a child after I had kids of my own--i have a grandson who is very hyper--I love him with all my heart, but 2 hours is enough and I wonder if colin is like I was--my mom has so many issues with me and I now feel it may have all started then--at any rate--my real symptoms started when I was pregnant with my 2nd child--I have 5 children and was sick with the last 4--each time getting worse--the last 2 I was sick all the time, I couldnt even sit in a rocking chair--I eventually had panic attacks, agoraphobia, and anticipatory anxiety--that was when I started on xanax, which kept me down pretty much--I was dizzy all the time I had been to an internal specialist, who of course told me it was all stress related, spastic colon, irritable bowel symdrome--I was raising 5 kids pretty much alone--my husband was never there and not a good father--I took pills that would allow me to do things, then was sick for days because of the pills--constant battle with myself--I was finally given paxil which did keep me more on an even keel, but I still had panic and diarrhea nearly every night, sometimes all day--I was miserable, I was having terrible joint pain, headaches daily--most of you probably know just what I mean--there were nights I fell asleep on the toilet, my legs would go numb and never an answer--my sister is a dietician and stumbled on celiac disease and convinced her doctor to test her--he said he knew that wasnt her problem and believe it, he was shocked when he found she was correct--at the time, I was newly divorced and had no insurance--my sister convinced me to go gluten-free and it saved my life--I have no doctor diagnosis and i dont need it--I know I am celiac--after 3 months gluten-free, I weaned myself off of paxil--at this point in time i was taking 40mg daily and was still having trouble coping (pre gluten-free)---there were days I was begged to please take my medicine---doctors tell you that paxil is non addicting, but they are wrong--you need it--there are still times I want it and I talk to myself----I always felt that my panic was a chemical imbalance and I was right--if more doctors would listen to us and not ignore what we say is going on, wouldnt that be wonderful--my sister is a diagnosed celiac and now at 69 my father is too--so, the odds are against me---now if only I could get my kids to listen to me--I do feel that at least 2 if not 3 of them are celiac too, but until they are ready to change, it wont happen--I guess they dont feel sick enough yet--I try using the cancer scare on them, but they are young and feel they will live forever--I hope I am wrong--I hope none of them have this------ I am gluten-free now for over 3 1/2 yrs--will be 4 yrs in july--I never cheat, never have since the first day--I have been accidentally glutened, of course and now I find I am soy and corn limited too--but life is good--I very rarely panic and when I do it's because I am very stressed and I dont take anything for it--I had trouble driving 25 miles to work before gluten-free and now--I moved 800 miles from michigan to long island and I have never been happier in my life--I have a wonderful man , I live close to the ocean and I found the best job I have ever had --I miss my kids and grandbabies--I have felt so much better here--the stress is gone from my life, a long distance relationship is so hard and now I am forcing my kids to grow up--my headaches are gone--all is good for me now----besides that--I have these forums and have met so many wonderful friends through here---thank you all--------deb--I do trust in my angels

[ianm]

All of my life I had felt different from everyone else but could never figure out why. I had very low levels of energy and had trouble concentrating. Because of this I was put into special education classes in school. The teachers would always say to me

[Guest BellyTimber]

Deb and Ian thank you for your breathtaking stories.

Ian there are things I have in common with you, I haven't been married. I think that gradually people where I work (but not at churches or other places I mix) have twigged and are expecting me to go the way you have gone though most days I'm just like I used to be.

Deb you say trust your angels - well some years ago a preacher invited everyone present to get healed and for once I thought, I don't know what of, but my eye immediately (within the week) fell on some writings of a woman who had gone through many experiences similar to me, though different outwardly - she could describe them so vividly - I was already aware of nerves and nutrition since a viral illness I had previously - these writings led me to further explore these areas - including dyslexia - and (through nutritionists) the link with food intolerance - I put myself off wheat but on extra rye, spelt, barley & oats, then I ate a Penguin biscuit (anyone from UK knows what that is) and came out in agony.

So it's a journey of healing like the man said but still ongoing. The doctor said go gluten-free and more recently I've been hassled about a biopsy but my line is I should have been told about it from the start and it should have been scheduled early on and I should have been given all the facts. The doctor keeps saying he can't daignose anything. There is an amazing amount of diagnosing without a biopsy. The UK is very hide bound with thousands of new rules and regulations at every pitfall which no-one bothers to explain.

I've had 8 major causes of stress in 7 years and it's either that or my poor motor and spatial ability causing difficulty in implementing the gluten-free diet, or both reasons, why I've been getting below par of late.

Before I found this board I was very cheesed off and indeed you all got my bad moods on the forum for the first couple of weeks.

I'm still not feeling very grateful but am defensive, vulnerable & worried.

[ianm]

What does not kill you only makes you stronger. That has got to be one of the corniest but most profound sayings ever. Whenever something bad happens and I'm still breathing and above ground then I try to look for the positive in it. Sometimes it is MUCH easier said than done but it must be done.

[Guest nini]

(Here is my story, It was recently published in my Health Food Store's newspaper)

So I'm coming up on two years of gluten free living and I wanted to share with you how much this has improved my health and my quality of life. Two years ago I thought I was dying, and I literally was dying a slow death of malnutrition and malabsorption . I had spent years going to Dr. after Dr. and being misdiagnosed with things like Irritable Bowel Syndrome, GERD (gastro-esophogeal reflux disorder) Fibromyalgia, ADD, Depression and anxiety disorders. Suffering with chronic sinus and upper respiratory infections, chronic fatigue, constant pain in my joints and muscles, high blood pressure, headaches, constant nausea, vomiting and extremely frequent diarrhea, frequent heartburn and seizures. I was overweight despite not having much of an appetite, and I had even convinced myself that I had an eating disorder.

The odd thing was that for the longest time, I was accused of being a hypochondriac, I was told that this was all in my head and there was really nothing wrong with me that a few prescriptions couldn't fix. Then I found a Dr. that believed me. Together with his Physician's Assistant, Dr. Rosen ran test after test to try and determine what was wrong with me. They sent me off to have ultrasounds of my stomach, kidneys, gallbladder and liver, and when each test came back negative they never gave up and just kept trying. Finally they decided that I needed to see a specialist and sent me to a gastro enterologist who they felt would be able to help me.

On my first visit with Dr. Hirsh, he sat down with me and looked over my history and without any hesitation he asked me if I had ever heard of Celiac Disease, and he was pretty sure that when he did the tests to look for it, that is what he would find. He told me I would have to start a strict gluten free diet immediately and that I would be on it for the rest of my life. He started with a blood test and scheduled a biopsy of my small intestine. About 10 days later he called to confirm that the blood test indeed showed markers for Celiac as he was sure it would.

On that first day after my visit with Dr. Hirsh, I found myself wandering the aisles of Life Grocery trying to figure out this strange new diet. I was standing in the middle of an aisle crying when the wonderful Ellen (the grocery manager) came up to me and asked me what was wrong. When I told her I had just been diagnosed with Celiac Disease and could no longer have wheat or gluten, she said,

[Nadtorious]

"That which does not kill me makes me stronger"

I've got that on my bike helmet-not for crashes, but for celiac disease.

[plantime]

I thought I replied on this a couple of days ago, but could not find it! When I went to my notepad, I found where I had started it, but not finished, then I remember that my husband was harrassing me that day, and I just wasn't in the mood for it, so I saved on my notepad to finish later! Here it is:

I never did have the classic symptoms of celiac disease. I was a small child, but my mom was only 4'11", so it was always put down to genetics. I would get very constipated, only going once a week, but I was always told that everyone's bodies were different, and that was normal for me. As a teen, my biggest frustration was how my tummy stuck out. My sister said it was because I was fat, but I only weighed 105 then. I always had headaches, was always tired, took longer than average to recover from illnesses (6 weeks I suffered with rheumatic fever, while the norm is 2!), and had constant anemia. I started gaining weight after my second marriage, when the food focus switched from processed to made-from-scratch. We ate a lot of meat and veggie meals, instead of pastas. Then when we did eat a lot of pastas and breads, I noticed the difference in how I felt. I looked back on how I ate as a child, and discovered that the times when we were the poorest, and could only afford meat and whatever veggies grew in the garden were when I felt the best! I first heard of Leaky Gut Syndrome from a woman at the church I used to attend. She had been having chest pains from stress, and had been researching different things. She came across LGS when she was checking out colon cleansing. I looked up LGS, and found Celiac Disease mentioned. At that time, I did not have a cpu or health insurance, and I did not have access to the library when it was open, so I did what little I knew to do. I quit eating obvious sources of wheat. My son was doing a fundraiser for one of his school groups, and someone I don't know ordered a magazine subscription. She never paid for it, which meant I had to, so I chose 6 months of Woman's Day. The fifth month of my subscription had the Feb issue, with an excellent article on Celiac Disease. Since I had my cpu then, I went to the Celiac.com website that was listed in the sidebar of the article. After reading and learning oodles from this site, I went totally glutenfree, including all of the hidden sources. That was Valentine's Day, 2004. On that historical (for me!) day, I changed my health, and picked up my husband at the airport for 2 weeks leave at home! After a couple of weeks, I felt so much better! I went to my doctor about it, but she said it was probably just an allergy, since I am fat. The subject was dropped as far as she was concerned. I did not go back, though, to eating gluten. I knew how I felt, and that is what mattered to me! I had a bad reaction that spring to Lipitor, which lead to lots of testing. An endoscopy was done on Sept 15, 2004, and that is when it was discovered that I really did have Celiac Disease. I work hard not to have accidents now, and I come here often (like every day!) to visit and learn more!