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Newbie To Site - "veteran" To Celiac


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#16 Guest_Robbin_*

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Posted 19 March 2006 - 05:18 PM

I too have neuropathy, and have often refered to my morning hobble --"like walking on bloody stubs". My hair is falling out, turning gray, my nails are non-existant, my skin itches constantly, I have tingling and numbness in my toes, have had infertility, endometriosis, miscarriage, fibrocystic breast disease (large lump removed), curved spine, and worst of all-severely distorted vision. This has been going on and getting symptom upon symptom and constant D, and the drs. for over 25 years have said it was this, and that and I was diagnosed with fibromyalgia in 1995, so they said everything was from the fibromyalgia. I can only hope that by my telling you and everyone else who reads this that gluten is DEADLY and has been slowly killing me. I am now on the way up thank God and hopefully some of the damage can be reversed, but how can I ever gain back the lost years? The times my kids wanted me to play, my husband wanted to travel, the things I once dreamed of doing when I was younger? I can never get that back. Please, if anything good can come of the mess that me and so many others here have gone through, let it be that you all take this seriously, and live a full, healthy life. (Ok, done preaching :) :) )
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#17 MallysMama

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Posted 19 March 2006 - 09:05 PM

I really appreciate all of your stories. I am new to hearing about all the other problems that Celiac seems to cause. Has research linked them - or has each individual connected the cause? I'm just curious because I've never heard of gluten causing problems with the Brain before. I'd heard that it can make us more susceptible to cancers...but never heard about brain problems. I almost wish I had gotten the disease later in life - so that I would have the chance to learn about it as I'm feeling better - I think it would have "hit me" more personally and made me better at following the diet now that I'm away from home.

My in-laws visited this weekend - so, of course, we went out to eat. We ate at Panda Express and at the Rio casino's World Buffet. I'm sad to admit that I (obviously) didn't follow the rules again. At home - I can do it... but when we go out to eat - it's so overwhelming. (Don't start preaching - I know it's bad...and I'm working on it. But 5 years of bad habits are hard to break.) However - I made bread from a mix (first time I've had gluten-free bread in more than 10 years....I hated it when my mom made it when I was little)! It was Pamela's mix. I wasn't sure what to think at first - since I don't like how bread feels (even "real" bread - yes, I've tried it)...but my MIL tried it and said it was almost normal. Then my hubby tried it and ended up eating like 3 pieces! And he claims to hate any of "my" food! :D I've only eaten one piece (with lots of jam on it)....but I might make it again some time!

Anyway - after reading all of your stories, I thought maybe I'd share my own. However, since I was so young...I really don't have any memory of it. So, I thought I'd share a letter that my mom wrote to me when I was little. It's really long (I might edit some of it to make it shorter)...so bare with me!

Dear Sweet Karleena,
How lucky you are to be alive!
When you were 14 months old (Oct 1984) you had symptoms of the flu. After a week of D, we took you to the Dr. We treated you for the flu for 6 weeks, with 24 hour liquid diet, then BRAT's diet, hoping it would run it's course. We were told it took a child that age about 6 weeks to return to normal. When it became apparent that it was not the flu, the Dr sent you to have blood tests and a sweat chloride test (for cystic fibrosis), which all turned out normal. He wanted to put you in the hospital for 24 hours on an I.V. to "clean out your gut." We knew something was wrong that just 24 hours would not heal. He had no other ideas. We didn't take you back there! The holidays were then upon us and we had to find a Dr. we could trust. In the mean time you had sever D (up to 14 times a day) and occasionally throwing up. Your Aunt Susan suggested a Dr. so we went to him. He had blood tests done. This time you rplatelet count was down to 20,000 (normal is 150,000 - 200,000). We rushed you to the hospital where you were tested for leukemia and all kinds of other things which all, thankfully, turned out negative. The Dr. then called in a specialist, a pediatric gastroenterologist. She suspected two things. Celiac Sprue, a disease of the small intestine, or Giardia, a parasite from Utah streams. The small bowel biopsy, to diagnose Sprue, couldnt' be done till your platelet count went back up, or you could have bled to death. So you were treated, in the mean time, for giardia. Meanwhile you were so sick that I held you all day, every day. You didn't eat or sleep well and remained quite motionless all the time. Everyday I didn't hink you would make it through another day. Your platelet count came back up and you had your biopsy done. And sure enough Celiac Sprue was the diagnosis. A gluten free (no wheat, oats, barley, or rye) diet was prescribed and 4-6 weeks and you should have been fine. No - you were the exception to the rule. Your malabsorption was, by then, so severe you still could not absorb any nutrients. You were literally starving to death. Your Dr. (then in May) put you in the hospital. You had an IV central line surgically placed for a long term IV hookup. Your Dad and I learned how to connect and disconnect the IV's. Within days in the hospital on yoru special IV solutions you drastically improved! After two weeks we left the hospital, bringing your IV set up home with us. Other than a blood infection, causing a 106.2 fever, and you chewing the cap off the tubes causing blood to back up all over your bed, all went well at home. You continued to flourish. By the end of August you seemd to be digesting food by yourself and your Dr. had the central line removed and did another biopsy. This time the biopsy showed you had healthy villi in your intestine. Good news after almost a year of bad! If you stay on your diet, you will do just fine. We are so glad that you decided to remain with us. There were so many times we thought we were going to lose you. Love, Mom and Dad

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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!)

#18 lonewolf

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Posted 19 March 2006 - 10:48 PM

Okay, that made me get misty eyed. Your mom sounds like such a sweet person. Please take care of yourself - for your sake, your mom's sake and your beautiful little girl's sake. No "convenience" is worth risking all that you have going for you.
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Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

#19 barry

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Posted 19 March 2006 - 11:49 PM

My name is Barry and I was diagnosed Jan 05 with celiac - possibly - the endoscopy showed flattened cilia, but all other tests were negative -
I spent much of the last year going back and forth into the hospital for fluids and testing ?
I dropped down to 98 pounds and my internists strongly suggested to put me on TPN
back into the hospital- I am now on the 1200ml of nutrients that enter thru a pic line that they put in at the hospital - my nutrients come bagged for 7 day supply - I have been gaining weight - though slowly

I have also been on predonoze for the last year - went for cataract surgery friday - from the prednozone-
The other medication I have been on is Azathioprine -also a anti infammatory -
I went two weeks ago to have another endoscopy at columbia prysb with celiac guru Peter Green and he sent me an email saying that the cilia looked no different than they looked last year.

I am trying to be more on top of the gluten diet. - I have not eattten out for the past 6 weeks
nor have brought in any food.
I am seeming to be doing much better on it - i am also coming down once again from the prednozone down to 5mg - which is where i usually have set backs. I have never had any pain with my GI problem - only the runs

I no longer eat shushi - my diet has gotten routinized
Lets keep sharing our successes and failures. I think this network is probably the greatest way to pool the knowlegde of our members.
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#20 Guest_Robbin_*

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Posted 20 March 2006 - 05:02 AM

I got teary-eyed too Mallysmama! You are so lucky to have a mom and dad like that. Thank you for sharing and keep up the good work-you are trying now, that's great.

Barry, i hope you begin to gain more weight soon. My gosh, you certainly have been through a lot. Please take care and keep us posted on your recovery. We are all here to "hold each other up" :)
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#21 MallysMama

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Posted 20 March 2006 - 04:24 PM

[quote name='Robbin' date='Mar 20 2006, 08:02 AM' post='116366']
I got teary-eyed too Mallysmama! You are so lucky to have a mom and dad like that. Thank you for sharing and keep up the good work-you are trying now, that's great.


Thanks! I do have wonderful parents! I forgot to mention in that post that at the time all that was going on my mom had to take care of my three older sisters and was pregnant with my younger brother. She's amazing! I know I need to do better for more people than just me. I guess I need to re-read that letter more often, eh!
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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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