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Newbie To Site - "veteran" To Celiac


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#1 MallysMama

 
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Posted 07 March 2006 - 04:36 PM

Hi everyone! My name is Karleena and I was diagnosed with Celiac Sprue in 1984 when I was about 18 months old. You'd think I would know a lot about the disease - but I don't! I've decided to start to learn more about it and meet people with it. I live in Southern Nevada (moved here June 2005 from Southern Utah) with my hubby and 19 mo. old daughter, Mallory. My third wedding anniversary is coming up next week and we are going to the Stratosphere Tower's restaurant (in Vegas) for a nice dinner. I'm not really too worried about what I can and can't eat. I am not very good at following the guidelines - the older I get the worse I get at eating right. (Since I was diagnosed at such a young age - it was more my mom's responsiblity to make sure I ate right for a long time...and I think I relied on that too much and since I've been away from home, I don't bother.) We never ate out while I was growing up (probably because of my dietary restrictions). My hubby loves to eat out - so it's been a whole new world for me and I really enjoy it! (Though I sometimes pay for it later in the bathroom!) So, as I check back to this site, I hope to learn new things about this disease I've had my whole life. Please share your stories with me so I can understand more and not take things for granted so much. Thanks!
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Diagnosed by biopsy with Celiac at age 1 in 1984.
No other health problems.

Hubby - no health problems.
Mallory (2 year old daughter) - no known health problems at this time.
Hannah (born 04/02/07) - no problems yet!
Family - no one diagnosed with Celiac - ever - to our knowledge. (Lucky me!)

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#2 mouse

 
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Posted 07 March 2006 - 05:12 PM

WELCOME. I think it is advisable to learn how to eat gluten-free before you end up like some of us have. Enough lecturing as I know some of the real experts on this site will address that and do a much better job then I will. We stay at the Mirage in Las Vegas and they have the best restaurant called STACK. They really addressed my gluten-free diet and I had the best meal that I have had in a restaurant since going gluten-free. The chef came out and talked to us about the menu. You should call the chef at the Stratosphere and talk to him before going. I am sure that they will accomidate you. You don't want to have bathroom issues on your anniversary. :blink:
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"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004
Allergies - corn, soy, casein, egg whites and wheat
Morphia Scleroderma
Osteoarthritis
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Fibromyalgia - diag. in 1978 when they called it Fibrositis
PAD Peripheral Artery Disease
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Gluten Ataxia
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Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.
Ocular Myastenia Gravis

#3 Lisa

 
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Posted 07 March 2006 - 05:27 PM

Hi Karleena:

Welcome here. I wish that you could monitor the posts here and I think that you can learn just about every thing you wanted to know about being gluten-intollerant or Celiac Disease.

If your good mother spend many years watching your diet, I hope that she is not distressed that you are not following her lead.

Celiac Disease is a very serious issue that can lead to not so good things. So I would encourage you to explore on your own. You are always welcome here with as many questions that you may have.

I was informed today, that I may had had a mini-stroke effecting my left side due to malabnorbtion (I can never spell that word) when nutrients could not get to my brain because my body was not absorbing the proper neutrients to feed my brain.

Join us and study this site. It will truely be more informative than any doctor you could go to. Mallory sure would like a healthy momma. Experience the lives of everyone who posts here. I think that you will be surprised. :)

Again, welcome
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#4 Guest_Robbin_*

 
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Posted 07 March 2006 - 05:39 PM

Welcome! PLEASE listen to people like Lisa who have been through so much. So much pain and suffering can be avoided by being diligent. Your precious child needs to have you around a long, long time and you want to be in good health to take care of her, too. I am so glad you found this forum. It has helped me so much and I am sure it will help you. It is impressive that you are not taking things for granted now and trying to understand more about it. I am still learning and healing and the information you get from people who have "been there" is invaluable. You are "lucky" in the fact that you didn't have to go the dr. go-'round just to get a dx. Take care & God bless, :)

And Lisa, I am so sorry you have had such a hard time of it. I hope and pray you have better days ahead. God bless you too!
Robbin
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#5 MallysMama

 
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Posted 07 March 2006 - 10:44 PM

Thank you, so far, for your responses and concern for me. I really appreciate the words of advice. To respond:
Robbin,
I'm glad I've researched this site also. (My hubby started working late shifts...so it's a nice time to get online after my little one's asleep.) I've already learned a lot - and now have a million questions about something I thought I knew enough about! I did have to do the "doctor go around" - I just dont' remember it. Back then celiac was very rare (not so much that it didn't happen - just that they didn't really know what it was yet)...I was tested for all sorts of things. It took months - very precious months at that age (I can't even imagine going through what my parents did with me - with my daughter right now). And yes, you're right I need to be healthy for my daughter.

Lisa,
My mom doesn't really know how much I "cheat" on my diet - I'm sure it would worry her sick. She always worried (without telling me of course) that I would never be able to have babies - that my experience of almost dying when they struggled to diagnose me correctly ruined more than just my intestines at the time. I guess I kind of, subconciously, feel "invincible" because I don't remember those horrible months and I was able to have a baby...and there are many times where I don't feel the after-effects of cheating - so I don't really Know that it's hurting me. Does that make sense? I can't really relate to a lot of the experiences many of you have had being diagnosed later in life and having many more related ailments as well...though I would love to learn about them and learn from them.
I am so sorry to hear about the possiblity of you having a mini-stroke. That scares me - could my body do the same thing? Even if I'm not feeling it - are the villi in my intestines being distroyed and not absorbing nutrients? I've heard a rumor about celiacs being more likely to get cancer in the digestive system... is that true? What kind of doctor would I go see to make sure I'm healthy enough?

I really appreciate your comments - and would love to hear more! Please help me get back on the right track and be more educated in a topic, though I've had forever, I am quite ignorant about.

One thing that's starting to make sense to me after reading more - my exhaustion level. I thought it was just from being a mommy, wife and working a couple nights a week waitressing that was making me so tired and down right lazy. But maybe it's because since giving my daughter gluten (we kept her off it till she was 1, just in case...so far so good though) I've cheated more (and cheated more from working at a restaurant)...so that could be causing my tiredness. Right?
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Diagnosed by biopsy with Celiac at age 1 in 1984.
No other health problems.

Hubby - no health problems.
Mallory (2 year old daughter) - no known health problems at this time.
Hannah (born 04/02/07) - no problems yet!
Family - no one diagnosed with Celiac - ever - to our knowledge. (Lucky me!)

#6 IronedOut

 
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Posted 08 March 2006 - 05:42 AM

I really appreciate your comments - and would love to hear more! Please help me get back on the right track and be more educated in a topic, though I've had forever, I am quite ignorant about.

One thing that's starting to make sense to me after reading more - my exhaustion level. I thought it was just from being a mommy, wife and working a couple nights a week waitressing that was making me so tired and down right lazy. But maybe it's because since giving my daughter gluten (we kept her off it till she was 1, just in case...so far so good though) I've cheated more (and cheated more from working at a restaurant)...so that could be causing my tiredness. Right?



Welcome to the board. My diagnosis came as a result of my malabsorption issues. I found Celiac while looking for the source of my severe anemia. I was exhausted, physically and mentally, to the point of hospitalization. If I had not gotten help when I did, I could have died of oxygen-deprivation induced heart failure. I thought my tiredness came from my overactive life.

I have few symptoms to tell me when I've had gluten. I didn't get the relief from pain and 'D' that keep so many on the straight and narrow because I didn't have them. I look at my children, remember the heart palpitations and memory loss and living the good life becomes worth every effort.

Your tiredness could be a sign of intestinal damage and malabsorption. Look in the restuarant section for lots of great places to eat that will work with you. There are also lots of suggestions about how to approach the staff to get what you need. My family and I just returned from a trip to Las Vegas. There are so many wonderful places to eat. I ate out each evening. I planned ahead and talked with each restuarant so that I would get a meal I could enjoy both while I was eating it and at night when I didn't have to worry that I had done some damage.

You'll find so many stories here. Almost all start with heartache (and tummyache). But everyone can tell their story because they chose to embrace the good life. Just the fact that your here is a really great start.

Wow - that was heavy. I need more coffee! Just wanted you to know that I really can and do smile. :D
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YIC Julie

Official DX 01/04/2006
~Iron bottomed out 12/08/2005
~Confirmed biopsy and blood tests
~All this and no symptoms that couldn't be explained by a good Mexican dinner

#7 Ruby Rose

 
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Posted 17 March 2006 - 06:35 AM

Hi everyone! My name is Karleena and I was diagnosed with Celiac Sprue in 1984


Hi Karleena,

Please embrace the gluten-free diet/lifestyle with your heart and soul! I was diagnosed in 1981 and the only reason why I am alive and well today, is because of the gluten-free diet. Here's the story of my journey towards a diagnosis ... you really don't want to get as sick as I was. Take good care of yourself!

While I was in my mid 20’s, my celiac symptoms became obvious (diarrhea, weight loss, fatigue, etc.). When I went to my doctor to discuss the problems, he took a blood test which revealed that I was slightly anemic and I was advised to take an iron supplement.

When I went back to him again, as my symptoms continued to worsen, he sent me to a psychiatrist who prescribed a "mood altering drug" which did nothing to alter my mood, so I told the shrink that I did not want to take the drug anymore and I quit seeing him ... my symptoms continued to get worse.

Because I belonged to an employee union, which provided a special yearly physical benefit with a facility not connected with my regular doctor, I decided to use this benefit ... I was advised to eat hamburgers and drink malts in order to gain weight, while my blood tests showed that I was still slightly anemic.

When I later returned to my regular doctor, he ordered an upper and lower GI series which revealed that I had a tiny ulcer. I was prescribed Tagamet which did nothing to help with my ever increasing symptoms.

Finally, after two years and many doctor appointments had passed, my weight had become dangerously low, the other symptoms worsened, my monthly cycle had stopped, my skin and muscles were beginning to atrophy, and I was suffering from edema. My doctor then referred me to a gastroenterologist, because he thought I might be suffering from "mal-absorption syndrome". I could not get an appointment with the GI for six weeks, so my doctor decided to monitor me through the waiting period with weekly blood tests and B shots directly into my veins. By the second week, my blood test showed that my liver was starting to look like "an alcoholic’s" as my doctor described it. He then sent me to the hospital under emergency conditions and the GI doc came to me that night.

On the ninth day of extensive testing, my GI forced a tiny long flexible tube down my throat, with a little metal "cutting attachment" on the end of it. After more than 24 hours of digesting the tube, the doctor pulled it out of me, which cut a tiny piece of my intestine (no anesthesia was used throughout this process). He then looked at that one and only sample of my intestine under a microscope, which revealed that I had no villi left at all.

When he came to my room to explain the results, I heard the words "Celiac Disease" for the very first time. Then I was told about the gluten free diet ... my response was, "That means I can still eat tamales!" I was released from the hospital that afternoon and immediately started the gluten-free diet. I had only one follow-up appointment with the GI, six weeks later ... he could hardly believe that I was the same person, because I had already gained some weight back and all of my symptoms had virtually vanished!

Way back in 1981, finding information on how to really be gluten-free was difficult at best. Fortunately, I was able to special order a book from my health food store, "Good Food, Gluten Free", by Hilda Cherry Hills. This book was my only source of information on how to manage the diet and regain my health. Also, I did a lot of research on vitamins and started taking supplements and continue to this day.

Just last year, I had my first follow-up biopsy which revealed that my villi are in perfect shape. As far as I’m concerned, the gluten-free diet is a gift from God! Since my diagnosis in 1981, I have not needed to depend on pharmaceutical drugs and I have enjoyed good health which I will never take for granted!

Ruby Rose
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#8 nettiebeads

 
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Posted 17 March 2006 - 01:20 PM

I really appreciate your comments - and would love to hear more! Please help me get back on the right track and be more educated in a topic, though I've had forever, I am quite ignorant about.

One thing that's starting to make sense to me after reading more - my exhaustion level. I thought it was just from being a mommy, wife and working a couple nights a week waitressing that was making me so tired and down right lazy. But maybe it's because since giving my daughter gluten (we kept her off it till she was 1, just in case...so far so good though) I've cheated more (and cheated more from working at a restaurant)...so that could be causing my tiredness. Right?

You HAVE GOT TO STAY gluten-free!!! I didn't, even though I knew better. I was eating cereals with malt flavoring and drinking Smirnoff twists and other malt beverages. I wasn't having reactions like I normally did when I ingested wheat. But I developed neurapathy - felt like I was walking on stumps every morning. My face was numb and was having other problems. It wasn't until I joined this forum in Aug 05 that I learned what I was doing to myself. I finally cut out ALL gluten (except for accidental cross-contamination) and have been on the straight and narrow ever since. Boy, what a difference. I was having such brain fog that one morning I was sitting at my computer at work and couldn't remember how to do a routine function on my software - and it's the same program that I've used for 5+ yrs! But now I'm back to multi-tasking, (but not as much as before) and can work out and go home and work on projects, clean, cook or in other words be normal (well, as much as I can, for me :P ) So, even if you don't think you're hurting yourself, you are doing damage. And you owe it to others around you to be as healthy as possible and to take care of yourself for yourself and those who love you!
Take care (I MEAN IT)
Annette
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gluten-free since Oct 1996

#9 VegasCeliacBuckeye

 
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Posted 17 March 2006 - 01:28 PM

If it helps,

We have a Celiac support group here in Las Vegas.

You can email me for more info if you like.

Our next meeting is Saturday April 22 at the New Whole Foods in Henderson (it opens April 5)

Bronco
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#10 Robix

 
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Posted 17 March 2006 - 01:38 PM

You HAVE GOT TO STAY gluten-free!!! I didn't, even though I knew better. I was eating cereals with malt flavoring and drinking Smirnoff twists and other malt beverages. I wasn't having reactions like I normally did when I ingested wheat. But I developed neurapathy - felt like I was walking on stumps every morning. Annette


Annette,

You just freaked me out. I swear to gawd, I just read your post about 5 times.

I have been feeling like I walk on stumps (like its hard to put my whole foot flat on the floor) first thing in the morning...I have been feeling like that for about two years, but blamed it on my shoes. I was sure it was either time to change my gym shoes (I teach intense fitness classes every day, and so just tend to attribute any ache, pain or muscle soreness or stiffness to that) or maybe that I wear high heels too often.

I never said a word to anybody about it, just thinking its normal.

Can you please explain what this is? :(
Thank you
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* Diagnosed with Pernicious Anemia in 1992, "celebrating" 14 years of monthly B12 injections
* Self-diagnosed with celiac disease in 2006
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Carpe Diem

#11 nettiebeads

 
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Posted 18 March 2006 - 04:55 AM

Annette,

You just freaked me out. I swear to gawd, I just read your post about 5 times.

I have been feeling like I walk on stumps (like its hard to put my whole foot flat on the floor) first thing in the morning...I have been feeling like that for about two years, but blamed it on my shoes. I was sure it was either time to change my gym shoes (I teach intense fitness classes every day, and so just tend to attribute any ache, pain or muscle soreness or stiffness to that) or maybe that I wear high heels too often.

I never said a word to anybody about it, just thinking its normal.

Can you please explain what this is? :(
Thank you

Celiac causes malabsorption. Your body's various parts are not getting the nutrients needed to perform and stay healthy. The problem is as an autoimmune disorder it affects everyone individually. No two people have the exact same reaction to gluten and malabsorption; there are generalities though. Neurapathy is your nerve endings (myelin) not getting what they need to produce the synapses to send signals to your brain. Myelin is produced from fat, which if you are not absorbing the type of fat needed - surprise! the myelin isn't healthy, the synapses aren't firing and ergo-neurapathy. Some people on other posts have gluten ataxia (think of it as advanced neurapathy) which is nonreversable. Neurapathy is. It was this forum that convinced me of the errors of my ways. I still have residual loss of feeling in my face and lips at times, but not nearly as bad as it was. And I now have legs instead of stumps! And how in the world can you be a fitness instructor? The fatigue I get from being glutened is crushing and lasts for at least a week. Sometimes a whole lot longer.
Since you won't listen to your mother, listen to us who live with celiac - GET gluten-free NOW!
Only because we care and you do have a precious little one who needs a healthy mommy.
Annette
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gluten-free since Oct 1996

#12 jerseyangel

 
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Posted 18 March 2006 - 05:11 AM

Annette--Thank you for the great explanation. :)
I had undiagnosed Celiac for, I figure, about 20 years. By the time I was diagnosed last June, I had neuropathy (although I had no idea what it was, and it scared me to death). I had numbness and tingling in my face--mostly on the left side, which gradually moved down to the arm, side, and then my legs started to get the pins and needles feeling. Since being gluten-free for the past 9 months, it has gotten better, but the facial, neck and left arm numbness is still there, but not as strong. There is so much happening to our bodies while ingesting gluten that we don't know about until it's too late--then we get symptoms. I only wish I had known about Celiac years ago, and went gluten-free that much sooner. I am sure I never would have developed the neuropathys and the additional food intollerances that I now have to deal with.
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#13 jaten

 
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Posted 18 March 2006 - 07:15 AM

Welcome! The phrase "playing with fire" is not strong enough to describe a Celiac's ingestion of gluten. You have a daughter who loves and needs you, and a husband who loves and needs you. More importantly, your body is worth taking care of because you are.

I wish I'd known years ago what I know now. I was diagnosed this past Dec. but like many others here, I was a very sick person by the time I sought and received help.

I have probably been Celiac most of my life (GI problems since childhood). Fastforward: For 6 mos - 1 yr (???) I had known that I needed to see a good GI that "something was very wrong." My stomach always felt crampy and bloated, extreme fatigue was interferring with life, nausea and pain were common after eating. I knew that tests would be run and was very concerned that the news wouldn't be good. I put off going to the dr. because it wasn't convenient to be sick. (Just what I was putting off, I'm not sure because I was very sick regardless....a scary diagnosis, maybe. Also, a family member was very sick, and we really kept thinking that his health was going to be resolved. "And then I'll go see about myself." All of these were just excuses, and not very good ones.)

The symptoms above continued to worsen. The pain when I ate was almost debilitating. In Oct '05 I woke up one morning and had lost 3 lbs. It didn't make sense, but since I was overweight, it sure was nice. Two mornings later, and I had lost another 2 lbs. I thought, "Huh, wonder how I did that?" Soon, it was 2 wks and 10 lbs. 3 wks to the day and I had lost 15 lbs!! (Yes, I was eating less because of the pain, but nothing so drastic as to explain this phenomena. By this point I was very, very scared.) I called the dr. who said, "How soon can you get here?" The tests began immediately and continued for a couple of mos. Ultimately, I was hospitalized. I had lost 35 lbs in 8 wks, and all the tests they had run were negative. The drs. were stumped.

I read in another post where someone here commented to her dr. "I can't even eat toast." As one dr. was literally scratching his head with his head in hands in my hospital room one morning, I had said those exact words to him. "I can't even eat toast!" Suddenly, he raised his head, and said, "Gluten! I think you may have Celiac Disease!" It's funny now, but I thought "Gluten!" was a German cuss word, and I'd never heard of Celiac. From there, a couple more tests, and the diagnosis was quick. Total villous atrophy.

I learned what gluten is, and how to avoid it. The healing has begun, but my body has paid a price. My skin is very dry, my hair is very thin, and my gut still really hurts sometimes. But my energy is returning, and my skin is improving. I hope the hair loss will reverse soon, too. If I had known years ago, I never would have reached this point.

Don't wait for your health to fail as mine did or some of the others described here. Start taking care of yourself now. Only you can do it.
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#14 megsylvan2

 
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Posted 18 March 2006 - 10:05 AM

I read in another post where someone here commented to her dr. "I can't even eat toast." As one dr. was literally scratching his head with his head in hands in my hospital room one morning, I had said those exact words to him. "I can't even eat toast!" Suddenly, he raised his head, and said, "Gluten! I think you may have Celiac Disease!" It's funny now, but I thought "Gluten!" was a German cuss word, and I'd never heard of Celiac. From there, a couple more tests, and the diagnosis was quick. Total villous atrophy.


I am sorry to hear of all you had to go through, and glad that you finally received a correct diagnosis and are on your way to healing and recovery.

But, I had to laugh out loud at this part of your story,
"... I thought "Gluten!" was a German cuss word...". :lol:

Too funny! (and too sad too!) Gluten!
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#15 jaten

 
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Posted 19 March 2006 - 02:57 PM

But, I had to laugh out loud at this part of your story,
"... I thought "Gluten!" was a German cuss word...". :lol:
Too funny! (and too sad too!) Gluten!

I'll take my humor wherever I can get it. The world needs more laughter. So yeah, it's really funny to me now, too :D
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