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34 & Just Awakening
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11 posts in this topic

Hi everyone,

I'm new around here & thought I'd share my tale. I'm 34, & have always suffered from chronic pain, to the point of being rendered incapacitated and unable to work at times. I have suffered a host of symptoms, such as insomnia, cognitive disfunction, bowel problems, cankers, migraines, allergies, etc, since I was a child. Doctors never knew or even seemed to care that I was so ill. Finally, in '97, I was diagnosed with Fibromyalgia. I went through the stages of denial/grief/acceptance, then set about coolly researching my newly found illness. But wait, something didn't seem right to me. I had joint pain, & there was no mention of that in the literature. Things weren't adding up. Still, I soldiered on, changing my lifestyle habits in the hopes of improving my condition. In October, I met a wonderful man online, who took it upon himself to listen to me & delve further than I had. He listened to me complain about how I felt I must have an allergy to wheat, & how I had pretty much eliminated it from my diet a year ago. He one day said, "I think you would benefit from a gluten free diet." This set the ball rolling. After much research & adopting the gluten-free diet several months back, it's painfully, clearly obvious that I had Celiac Disease. Why no doctore had ever been able to pinpoint this leaves me feeling more then a little angry and frustrated. What's more, my mom has been severly ill all her life with the same kinds of symptoms as me. Now, at the age of 58, she's doing the gluten free diet & feeling stronger then ever. This man who helped me learn of my condition is now my boyfriend & I credit him with saving my life. I'm feeling stronger all the time, though I have little "brushes with gluten" it seems on a weekly basis.

Here's to better health!!

AngelMy Webpage

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Angel, welcome to the site and thanks for sharing your story. It is frustrating that diagnosis is delayed for so many people. That's why I take every opportunity (without, I hope, being obnoxious!) to talk about celiac disease and how it manifests in weird ways. So many people are horrified at the thought of giving up wheat that they are in denial about having it, so I emphasize how there are gluten-free alternatives to wheat-based goodies of every type. I'm glad, too, that you met an understanding gentleman through your reaching out online--how lucky we are to have the internet and sites like this one! I don't think without the Internet I ever would have discovered what was wrong with me. It's very empowering. Here's to good health for us all! :)

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I figured out my celiac diagnoses on my own too. My doctor said I had irratible bowel syndrome and basically gave me no hope. Funny how when I went off gluten, I became much healthier....

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Angel, I also figured out my own diagnosis, with the help of Danna Korn and her son whom I saw on TV and decided to request testing. My doctor didn't believe I had celiac but at least he decided to test me and was totally amazed that I had positive blood tests, and even more amazed at the biopsy. This was after a lifetime of problems and at 67 years I was finally diagnosed. I hope you can really adjust to the gluten free diet without problems. I was thrilled to find out that all of those problems really had an definitive etiology. Most doctors over the years told me I was a real hypochondriac. And I really understand the many Celiac's who have been accused of being a little nutsy. Enjoy your new lifestyle. I certainly do. I hope eventually our descendants can be diagnosed early and without problems. Shirley

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Hi Angel - I was soooo glad to read your story as I too have gone undiagnosed for so long that I'm not even sure how I should feel once I get better! My last doctor, a gastroenterologist, by the way, summed up my symptoms this way - "well, you're not losing weight so I wouldn't worry too much!" Helpful, huh? :D

Anyway, my mother was the one who suggested celiac disease and once I started delving into the subject, I found that most of the problems that I've been experiencing all these years fall into this category.

So on July 1st, I started a gluten free diet and of course, I expected immediate recovery (hey, that's my personality type - what else can I say! B) ) and for two days, I honestly felt free of most of what I call "my attacks".

Then this morning, I drank a cup of coffee and seemed to have triggered something (or could it still be reactions to things I ate prior to going on this diet?) :huh:

In short, I think this is the way I'll have to eat the rest of my life and I know that at my age (59), its going to be very hard to retrain my eating habits. I think I will be needing all of your help a lot.

At this point, I am very scared to eat anything as I'm not sure what I can eat without accidentally ingesting gluten - so I'm sticking with fruits and vegetables until I can absorb all this new information.

Thanks for listening and although I'm sure you're not the one responsible for this website, I'm so grateful for finding (all of) you!

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Thankfully we have our answers - now it's our jobs to take this info out to those who don't know about celiac disease.

Just this week the National Institutue of Health ended a 3 day conference regarding the under diagnosing of celiac disease (for info go to CNN.com - the article will be available until 7/30/04 at least). The conference confirmed what we know: that celiac is under and mis diagnosed in the USA and that doctors should be more aware of the disease because the population of those who have it is greater than originally thought.

One of my ministers used to say "The shepherd doesn't make more sheep, only sheep can make more sheep." Meaning that if the church wanted new members it was up to the membership to reach out for more. Well we are at this junction. We need to reach out to the other "celiac sheep" and bring them into the fold. We live it, so we can talk intelligently about it and like the Christians say, "Be a witness." For my part I purchase the Celiac brochures from the CSA and leave them in the doctor's waiting rooms, at the beauty parlor, in the waiting area of the drug store and the local X-Ray/diagnostic office, at my chiropractor's office, at work in the lunch room, I've mailed them to distant friends, relatives, associates/even my minister.

I also made my own one-sheet page describing celiac using that booklet as a guide and leave them at the supermarket. I even gave it to the girl scout leader when I had to tell her I couldn't buy the kids' cookies.

I go on the message board which my internet provider has and I go into the Irritable Bowel section and post messages that pretty much ask other posters if they've ever been tested for celiac and how celiac mimicks IBS/colitis. So far a few people have asked me for more info and said that they want to be tested as soon as they return to their doctor. I hope I am able to make a difference in someone's life.

Debmidge

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I go on the message board which my internet provider has and I go into the Irritable Bowel section and post messages that pretty much ask other posters if they've ever been tested for celiac and how celiac mimicks IBS/colitis. So far a few people have asked me for more info and said that they want to be tested as soon as they return to their doctor. I hope I am able to make a difference in someone's life.

Debmidge

Debmidge,

That's terriffic! Whenever I hear of people with IBS or something like that, I always think celiac disease.....though I've explained celiac disease and the gluten-free diet a zillion times, I don't think that there are too many who listen to me.... :lol: anyway, there are one or two people who identified relatives with problems that sound like celiac disease and found it interesting...especially the 1 in 150 statistic....I don't think any of them followed up on it, though. Then again, unless I was having serious issues, I don't think I'd pay too much attention, either....that's good that you are spreading the word, though....after all, you could be adding 10-20 years to the lives of multiple people who would have died of cancers...you could have saved someone from having to endure severe osteoporosis and arthritis....congratulations! Good work :D

-celiac3270

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Hello i am pretty new to this site, I have been told that I might have celiac disease, I have had problems with my health for 7 years now from iron deficiency anemia to elevated platelett count, to thyroid problems constant fitigue, severe bruising, paleness i look like a ghost sometimes and I used to have great color until 7 years ago. I am scheduled to have endoscope the end of this month I have researched celiac disease and couldn't believe what i was reading there were so symptoms that i havew had and i have been to numerous doctors and have been through so many different tests up to cancer biopsys , I reciently went to see a GI for reflux problems and heart burn. And as he was going over my medical records I told him about all the problems I have had over the last 7 years and he wants to do a biopsy to check for celiac. He didn't tell me to start on a gluten free diet but I want to know If I do decide to go ahead without his suggestion will that throw off the biopsy, I am not scheduled to have biopsy until july 26.

Any help I would gladly appreciate.

Thanks.

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chasefamily,

Do NOT go gluten-free until you have completed your tests. Going gluten-free will alter the results.

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Hello again....yes, I get the bruising too. At any given time, I have about a 1/2 dozen mysterious bruises on my body. After some research, I believe that that's due to iron deficiency. Iron helps to circulate oxygen, which may quell the bruising. So I'll let you know if that helps.

I attended the NIH conference on celiacs, & the most important thing I got out of it was the understanding that being on a gluten free diet alone is not enough. The gluten-free diet is not a nutritionally perfect diet, & has deficiencies of its own. You have to supplement your diet with vitamins & minerals & make sure you get enough fiber. I have been gluten-free for a few months & have still been having some symptoms & couldn't figure out why. So now I'm attempting to be gluten-free & be more careful about eating nutritious foods, not just chocolate! (which is, by the way, the most perfect food...)

I've had a very painful day today & have been feeling depressed, moody & grumpy. Sometimes I feel waves of self-pity, but boards like this help soooo much to know that I am not alone. Thanks all for sharing...

Angel

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Hey Angel,

Welcome to the boards. I read your first post with a great sense of 'ditto.' I ws diagnosed at age 34, also. I had a lifetime of illness prior to my diagnosis. That included reflux, duodenal ulcer, weight issues (overweight/unable to lose), acne, itching, cankers, bruising, fungal infections, chronic strep throat and ear infections, anemia, stomach trouble, irritablility, exhaustion, hormone imbalances, several bone fractures, multiple allergies, etc. I lived on antibiotics from age 9 til age 34, often having 12-15 prescriptions per year. I had reactions to many of the antibioitics, but now we know they were the ones that contained gluten !!! We also know from blood tests that my immune system was severely compromised, but the pneumovax last fall boosted that back to normal levels.

Since going on a gluten-free diet last August, all of my allergy issues have subsided. I have lost about 35 pounds (back to normal size 8/10 now). My stomach feels great except for (RARE) accidental cases of gluten ingestion.

The one thing that was the most helpful for me was strictly following a PALEO diet for 4-6 weeks to calm down my system -- meat, fruits, root veggies (no beans, no dairy, no potato, no grains) I still eat mostly paleo, but eat occasional plant foods (such as rice). I generally eat NO junk food of any kind (no chips, no chocolate, no sugars). Even if those things don't contain gluten, I never feel great after eating them.

I, too, get really angry about all the doctors (even gastroenterologists) who mis-diagnosed me for so many years. I am planning to write a letter to each and every one of them. I will include celiac disease brochures and information so that they don't let another patient suffer as I had.

Kathleen

gluten-free since Aug. 2003 & dairy-free, corn-free

positive blood tests, negative genetic test (but doc says I am one of the 5% without the gene who is indeed positive for Celiac)

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    • I'm actually scared to go to the doctor and could use some advice
      Well, if I were you, I would go see your doctor and talk to him/her about all this.  Tell your doctor about your anxiety. When I finally did, my doctor prescribed a low dose of an anti-anxiety med and it has made a world of difference in my life.   About the whole thing with the B12 and the weird symptoms . Keep taking the B12 in the meantime to see if that helps again. But talk about it anyway.  If you want a celiac test, ask for the panel to be done. Your doctor may or may not want to send you to a GI for that. Remind him your mom is being tested. You do not have to wait for her results.  Work with your doctor if possible and if not, maybe find a doctor you can work with. If all you end up needing is b12, that's a good thing. If you end up needing more help, starting with your doctor and a heart to heart Talk will have you going in the right direction.
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    • I'm actually scared to go to the doctor and could use some advice
      I suspect I am dealing with vitamin deficiency, but I'm afraid that if I go to a specialist they're going to think I have MS. As a person with pretty bad health anxiety, I can't bring myself to make the appointments I know I should make. I presented to my GP about 9 months ago with fatigue and a bizarre tingly feeling in my lower left leg. I was also suffering digestive distress, but I've lived with that off and on my whole life, so that was the least of my worries. My blood tests showed that my B12 level was 280. They didn't turn up any other issues, but then again she did not order any other vitamin level tests, only thyroid and routine bloodwork. She called my B12 level "on the low end of normal" and put me on oral supplements. When we retested 6 weeks later, it was 1100 and she told me to drop it back because that was too high and too much B12 can cause health issues, too. I'm confused by that because I've read that it isn't possible to take too much. I started a new career in a new town, and simultaneously began to feel better. The fatigue went away first, followed by the tingling and other stuff. Still plagued by both extremes of digestive distress. Maybe I should also mention that I was diagnosed with GERD at age 29 and have been on PPIs for 10 years. At that time, nobody ever mentioned investigating my GERD at such a young age, just put me on the pills and said stay on them. A gastroenterologist concurred after a very brief office visit. Well, I can be bad about taking my medicines, so I got off the B12. I figured maybe my earlier issues were stress-related. Now my symptoms are back, but worse. I have tingling and some aching in the leg. I have a sensation in one spot on my upper arms like the skin is burning, but no rash or redness. I have the C extreme of digestive problem, only alleviated by taking lots of magnesium citrate capsules. Sometimes I feel easily chilled, like waves of goosebumps. I am working to get off the PPIs in case they are inhibiting my absorption of vitamins. My mom has had really bad IBS all her life, plus eczema, headaches, etc. I'm back on the B12 for about 5 days but have experienced no relief yet, however I do remember that it took about 2 months to feel better the last time. Getting ready to move, on top of being really scared about these health issues, is making me crazy. I'm only 40 years old!!! Here are my questions: 1. Do I go back to the GP and ask her to order a celiac blood test? I know NOT to go off gluten until I am tested. 2. Do I ask for a referral to a neurologist or gastroenterologist instead? 3. Do  I wait until my mom's gastro appointment next month, when she plans to ask for a celiac blood test? See if hers is positive? 4. Do I keep driving myself insane with the worry that I have a degenerative illness? Can anybody identify with any of this at all? 
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    • Depression / anxiety issues
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