They Thought I Was Crazy And Sickly For Nearly 35 Years.

[Timber4est]

It started out all innocent, being sent from the table as a young child for passing gas. I knew it would get me in trouble, but it wasn’t easy to hold in. We had stringent rules at our meal table growing up. No belching, no speaking unless spoken to, no passing gas and always-proper etiquette. I should add, I was always being sent to bed early for passing gas, I always had it more than others. It just seemed like everything I ate caused my stomach and gut to hurt.

At age 12 when all my friends were taking growing spurts, I had stopped. I was then and still remain a short 5’3”. My abdominal pain was horrid by this age, the doctors saying nothing was wrong, I was simply a young girl who didn’t cope with stress very well. “Here, medicate her stress away”. Funny, I didn’t feel stressed or emotional. Sure, I got irritated easily, but this was due to the abdominal pain I suffered from 24/7 and the fact that no one would listen to me much less believe me.

At age 17, the out of the blue seizures began. Immediately I was placed in the hospital. First came the cardiologist who tested, poked, prodded and announced my heart was fine. Then came the gastroenterologist who performed both an upper and lower G.I., probed, prodded, poked and announced my digestive system was fine.

By now, I had been in the hospital four days and had only had 1 seizure. The hospital food was making me feel worse. I had been active all my life and was on the varsity track and field and cross-country teams. I ran and trained hard, just as hard as all my friends, but always suffered from injuries. While healing from an injury or surgery due to an injury, I would participate and train with the swimming team. Yes, I was also on the varsity swim team. I excelled in sports because this was the one thing I could control. Learning how to push through all the pain I was constantly suffering from in my abdomen.

More and more doctors poked and prodded me, this exam, that exam, forced to swallow so many concoctions, some of which would light up a specific internal organ for x-ray, ultrasound or other “internal” look see test. The worst of all was when the neuro surgeon came in to perform his tests. They poked my scalp with a whole bunch of wires, tested me to light, sound and other stimuli, did a scan on my head when at last the neuro surgeon announced that everything was fine, it was all “in my head” and told my parents I needed psychiatric help.

So up to the psych ward I was delivered where they put me on fist fulls of medications to control my swinging moods. This did nothing for the constant pain I suffered from. One of the doctors even diagnosed me with Irritable Bowel Syndrome. I was released from the hospital with the diagnoses of depression and IBS.

Graduated from high school with honors and went off to college, met and married my husband. When we decided that it was time to have a family, I went off all the depression medication, as I didn’t want this to interfere with a pregnancy. Funny thing I felt better off all the medication. The abdominal pain I suffered from most days got the best of me. I had to be careful in how I moved, not twisting too rapidly and so many other problems that came along. Our first pregnancy ended in a miscarriage, by the time we had our two children, both born premature (by 10 and 8 weeks) we had lost seven pregnancies due to miscarriages. The abdominal pain continued, my menstrual cycle was crazy, I had so many surgeries and was poked and prodded by ever GYN and infertility specialists in trying to figure out why we had so many problems trying to carry a pregnancy to term. They always announced that everything was normal, no problems. In the end, I had a total abdominal hysterectomy. No change in my abdominal pain however, it continued getting worse.

Through the years I developed Thyroid disease, rheumatoid arthritis, osteoporosis and at last liver disease. The hepatic specialists that my insurance company had sent me to announced that my liver disease was due to my alcohol consumption. No matter how many times I told her that I was a non-drinker except for Thanksgiving, Christmas, New Years and Easter where I would have one glass of wine only, she wouldn’t believe me. She noted in my chart that I was an alcoholic and would no longer treat me as my liver disease was self-induced. I was real ticked off at this point. I had suffered from all this abdominal pain and other problems for as long as I could remember, and for as long as I could remember, the doctors thought I was crazy or said everything was normal.

Due to all the pain it was hard to sleep, I was tired all day and my life was hard to enjoy.

I can’t even begin to tell you all the tests, all the labs all the xrays, ultrasounds and scans that were performed through the years. Always the results were “everything is normal”. I knew it was not normal, I was in pain, it wasn’t in my head and it was impacting my life in a very traumatic way. I have probably given enough blood through the years to serve a national disaster with blood donations from all the lab work.

Then it happened. After three days of extreme abdominal pain I had a bowel movement come out white. My General Practitioner sent me immediately to the hospital where he had a friend of his who specialized in colon cancer, perform some tests. He listened to me, wrote down a bunch of notes about my medical history and honestly appeared to be listening. Then he said, “I would like to start with some lab work, a simple blood test and schedule you for a simple biopsy, from there we can determine what you have suffered from all your life”. This took me back, I was waiting for him to call for a psych evaluation like everyone else had through the years. He didn’t, I was moved to a room, the blood was drawn and the following morning a biopsy was performed. I was then released to go home.

A week later at my follow-up exam this dear sweet colon cancer doctor sat me down in his office to go over the few tests he had run. I had a week to think about everything, I had been sent to a cancer specialist so in my mind I hoped for the best, but prepared myself for advanced stage of cancer. After all, if it were cancer and had been the cause of everything my whole life, it would have to be advanced as I had had it for a minimum of 35 years. I was nearly 40 years old now and had known and suffered from all this pain since I was 5 years old.

“Have you ever heard of Celiac Disease” he asked. I had not. He then reviewed his findings in the lab work and biopsy and announced without a doubt, I had Celiac Disease. There you have it, the root of my plight with modern medicine and having my doctors and family think that I was crazy all these years.

He sent me to a nutritionists who is assisting me in changing my diet. I share my story in hopes that others suffering from my problems, Osteoporosis, Rheumatoid Arthritis, Liver Disease, miscarriages, seizures (intermittent) and all the abdominal pain suffered for the better part of 35 years, that they might ask their doctors flat out to test for Celiac Disease. I will be 40 in a few months and have suffered all my life. The complications and other diseases are a result from so many years of the Celiac going un-diagnosed.

It is nice to at last know that it is not all in my head and is very treatable. So now at age 40, I am about to embark on a new journey of a gluten free life. No doubt I will have many questions, but it is good to know, It isn’t in my head and I am not crazy—lol. I never thought it was all in my head, but everyone else sure did.

[lonewolf]

Welcome! Wow, what a story. Sorry you've had so much to go through, but I'm sure glad you finally found the answer. Please ask lots of questions and let everyone here help you. Most people here are very helpful and you'll get a lot of good info.

[jerseyangel]

Timber--I read your post with tears in my eyes. I know the feeling only too well--the people around me, who I looked to for support didn't believe anything was "really"wrong. I was always the "sensitive" one, who "thought with her stomach" (I hate that analogy). Even as I got older, I kept it to myself as much as possible to avoid the rolling eyes and the glazed over expressions. Thank goodness you finally got an answer so you can be on the road to health at last. Please ask any questions that you have about navigating the gluten-free lifestyle. The people here are so kind and knowledgeable--the diet is not difficult--the only porblem for us is that we didn't know about it years ago.

[chrissy]

your story brought tears to my eyes. welcome to the board. i'm pretty new here myself (3 kids diagnosed about 4-5 weeks ago. i'll bet you won't do this---but doesn't it make you want to go back to each and every doctor (especially the one that sent you to a psych) and show them what the cancer specialist has discovered??

christine

[Timber4est]

I do have a question, my nutritionist doesn't know of a cook book for gluten-free diets and I would really like one!

[chrissy]

bette hagman has several books: The Gluten Free Gourmet, More From the Gluten Free Gourmet, The GlutenFree Gourmet Cooks Fast and Healthy, The Gluten Free Gourmet Bakes Bread. i also have one by Carol Fenster called Gluten Free 101. i have also used my old favorite muffin recipe and buttermilk pancake recipe from my betty crocker cookbook. i just used a combination of gluten free flours and added xanthan gum----they tasted great, no one would have known they were gluten-free. there is a flour called Tom Sawyer flour that already has xanthan gum and unflavored gelatin mixed in. the web site says you can use it cup for cup in regular recipes. i haven't tried it yet, but i plan on ordering some to see how well it works.

christine

[mommida]

My favorite cook book so far is The gluten-free Kitchen by Roben Ryberg. Check with your library they may have some of the Gluten-Free Gourmet books by Bette Hagman on hand.

I am glad you have finally been diagnosed! I hope you find all the help you need here.

Laura

[DonnaD]

hello i am only 11

me and my mum were reading your story and nearly cried. i have some of the same symptoms in my family. my mum has got lots of help from this forum for me and for her. as she had a similar story.

L.xx

[Guest nini]

Timber, your story sounds sooooooo much like mine. I was 33 when I was finally dx'ed. But for so many years I was told it was all in my head, I just had a nervous stomach, blah blah blah... my own mother has called me a hypochondriac for YEARS because a Dr. when I was a child, told her I was just doing it to get attention . I'm still not over that one. I had it all, the pain, the upset stomach, the seizures, the miscarriages, osteoarthritis, fibromyalgia, endometriosis... (but it was all in my head...) anyway,

feel free to e-mail me with any questions, just click on my name and click e-mail or pm... I'm here to help any newbie navigate the ins and outs of trying to deal with this new lifestyle...

[Timber4est]

There is so much to learn and understand about being Celiac!

I might add that the three days of extreme pain was caused by my new "Menopause VitaPak" vitamins from GNC. My General Doctor removed me from estrogen nearly three years ago and all the problems caused like the hot flashes and night sweats were driving me bonkers. I had only been on the vitamins for a week, didn't know about gluten issues and by day four taking the vita pak mixture it took me to new heights in pain. I never in all my life would have thought the simple act of taking vitamins would have caused it.

After nearly a week on my new diet, the pain continued to get worse. It was just today after speaking with the girl at GNC that I found out my vitamins are not gluten free.

I called my nutritionist, who admitted all she could tell me was what was in her books as she didn't really know much about Celiac diets outside of her books. Just goes to show how much "self healing and education" is required.

I contacted my insurance company and asked for an approved doctor with experience with the treatment of Celiac and they said they didn't have one.

If any of you live in Utah and have a good one approved by IHC (the owner of all our hospitals here local, so they have to be approved by IHC) could you please let me know their name?

Also, what is a good source to get gluten free vitamins/minerals and all those other things so important to us post menopausal women?

Deborah

[Nancym]

My response to your posting was anger. But happiness you got a diagnosis finally. I can't believe how someone could label you an alcoholic even though you don't drink! I think if that happened to me I'd probably write and have notarized some sort of statement and tell the doctor to include it in my medical file. That would probably intimidate the hell out of them.

[Timber4est]

Nancym,

I did file a report with the insurance company who did nothing. I then filed with the state insurance board who also deals with the licenses of the doctors. This doctor is no longer in practice in the state of Utah. I found out that my report was not the first report of her actions like this.

We have to remember that doctors are people and negative begats negativity. Perhaps she has learned her lesson or discovered that her lack of compassion for humans in need are not her cup of tea.

Either way, we all have a voice and should never fear using it. Our doctors and insurance companies share databases with each other. She put into that database that I was an alcoholic and this little fact took me months to find out. Only by accident when one of my doctors asked me if I had considered AA did I know she had put this into the database and shared it across all IHC doctors --that was when my anger boiled to the point that I stood up for myself and others she had done this to.

[key]

I am SOOOOO sorry for the hell you have been through. No human should have to endure all that for 35 years. I know you are over joyed to find the answers to years of suffering. I suffered for years too and had two kids with birth defects, but you really had alot to deal with. Your story is very sad to me.

The part about having gas as a child. I remember that one. My family even had a nickname for me, how nice! Luckily, my family wasn't so uptight about that. My poor husband about died on our honeymoon. He is MUCH happier with me gluten free.

Ask lots of questions and hope you start feeling much better soon.

MOnica

[elonwy]

Wow, that made me cry. I'm so happy you finally know whats wrong. And not to be horrendously selfish, but I'm super-grateful I've been diagnosed at 28.

There aren't that many Celiac specialists out there. I think the best you can hope for if you're not in Maryland or San Deigo is a GI who is familiar with it. My doctors are friendly, but not that knowledgable once I got diagnosed.

For cookbooks, the ones mentioned are good, but I've personally had the best luck with the South beach diet 30 minute recipes book, and I stick to the Phase one recipes and then add a side of rice or quinoa. Most of the Phase 2 and 3 things can be easily modified as well. I work fulltime and have parttime job as well, and alot of the gluten free recipes I've found take way too much time. South Beach focuses on fresh fruits veggies, and meats, and is a healthy cheaper way to stay gluten free.

Good luck, Welcome, and I hope you feel better soon.

Elonwy

[cinda]

Wow, I read this and it is like I wrote it. I'm so sorry for all you have gone through. No one should have to. I am sick at how they teated you regarding your liver disease. That is beyond horrible.

I am from Utah also. I actually see a Nurse Practioner in Ogden. She is an IHC provider. She has been wonderful. I work at a Nursing home and the Dietician here brought me a list of Websites. This one is still my all time favorite.

My mom went to McKay Dee Hospital's libary and checked me out two really good books, one on the disease and a cookbook. As far as I know all IHC Hospitals have a libary you can use.

I have not joined any support groups yet. I have been told the SLC one is very good. Actually I have been told the Ogden one is great too.

I am still really new at this, I was diagnosed last Oct. Everyone here on this site has been wonderful. This has become my support group. I'm still learning but you are more than welcome to write me.

I wish you all the best. It does get better and soon you will feel like a brand new person.

Monica

[cgilsing]

Welcome Timber!

I'm so sorry to hear that you had to go through all of that! Sometimes I just don't know what to think about doctors.....They are supposed to be here to help, but then they don't listen and they don't care! That would have made me so mad about the alcholism diagnosis that was given. When doctors do something like that it can follow you! And then the next doctor to read your record already has a pre-concieved notion about you. It's just wrong! However, twice now, I have been ready to curse the profession as a whole and take to nothing but self-diagnosis when I have found an angel who listens to me and treats me like a person! I wish it hadn't taken so long for you to find your angel, but I'm glad you finally did!

[Nancym]

Nancym,

I did file a report with the insurance company who did nothing. I then filed with the state insurance board who also deals with the licenses of the doctors. This doctor is no longer in practice in the state of Utah. I found out that my report was not the first report of her actions like this.

We have to remember that doctors are people and negative begats negativity. Perhaps she has learned her lesson or discovered that her lack of compassion for humans in need are not her cup of tea.

Either way, we all have a voice and should never fear using it. Our doctors and insurance companies share databases with each other. She put into that database that I was an alcoholic and this little fact took me months to find out. Only by accident when one of my doctors asked me if I had considered AA did I know she had put this into the database and shared it across all IHC doctors --that was when my anger boiled to the point that I stood up for myself and others she had done this to.

Good for you! So glad you were proactive about that. Boy, we should really have access to that information as well. How horrible to find out about it like that.