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How Long Have You Been Gf And How Do You Feel?


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35 replies to this topic

#16 tonileet

 
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Posted 02 January 2004 - 03:16 PM

Happy, Healthy 2004 to everyone, old and new!

And thanks, Lisa, for asking for progress reports. Good idea. I'm enjoying reading everyone else's. I haven't posted for a while but I've been reading everyday and always learn something new.

January 11th will be my 6-month gluten-free anniversary. Overall, I'm steadily improving. The mental relief, alone, of finally knowing what's going on with my body, has turned my life around. Here's my report:

Mouth ulcers: Frequency and severity diminished immediately after going gluten-free! I'd say they are 80-85% improved.

A happy side note: My last teeth cleaning showed significant gum health improvement! I had oral surgery several years ago and seemed to be heading in that direction again, but no. Hooray! I've been brushing my teeth with only baking soda and water for over a year, as well as using a proxy brush dipped in diluted hydrogen peroxide in between my teeth (and flossing daily, of course). It's doing the job well! There are too many ingredients in toothpastes that could be a problem - gluten, of course, but also SLS (sodium laurel sulfate). SLS has been shown to cause mouth ulcers in some people. No, thank you!

Diarrhea: Got worse at first. Now it's only a day or two every couple of weeks.

A happy side note: I've gained 13 pounds since going gluten-free! I no longer look anorexic. I'm now at a weight that feels right for me and have started taking exercise walks again.

Bloating: Instead of days on end, it seems to happen only when I overeat now.

Abdominal ache: Infrequent now.

A strange neck/throat sensation that feels like it's swollen on the outside and tight on the inside: Used to happen quite often but has only happened a couple of times since going gluten-free and not for a couple of months now.

Since going gluten-free, I've developed the following symptoms:

Itchy Scalp: Started about 2 weeks after going gluten-free and hasn't quit yet, although sometimes it's less irritating than at other times. In fact, maybe someone can answer this question: Is salicylic acid gluten-free? I think I read or heard somewhere that it is NOT safe for us to ingest but I can't, for the life of me, remember the source. <_< Salicylic acid is a preservative and flavoring agent in aspirin and I know that some aspirin isn't gluten-free. Anyway, I'm asking because Neutrogena sent me a list of their gluten-free products and after using their "Healthy Scalp" anti-dandruff shampoo (that they say is gluten-free), my scalp began itchin' like crazy! It contains 1.8% salicylic acid. Needless to say, I stopped using that shampoo, and I'm back to wearing hats to help me resist scratching. I can't wait for my scalp to calm down!

A happy side note: It doesn't help that I now have stronger, longer fingernails, in terms of the scratching, but.....what a delightful surprise my nicer looking nails has been! I've never had nails this nice. I take this as a sign that my body is now absorbing calcium much more efficiently and I'm keeping my fingers crossed that my lower back osteopenia is repairing itself.

Itchy red splotches: About 5 months after going gluten-free, several small red splotches (intensely itchy and like pinpricks when touched, too) errupted all over my upper body. They were easier not to scratch than my scalp, but it took a major effort. They lasted about 2 weeks and haven't reappeared, fortunately.

Knee bone pain: About a month after going gluten-free, my knee began to feel and act weird. There was one spot in particular that would cause a sharp pain every time it hit the cabinet door when I stood at the kitchen counter. I was SO close to contacting yet another doctor, but decided to wait it out a little longer, and it disappeared. So far, so good.

Am I happy to be gluten-free? You bet. Eating away from home is the most difficult part. Planning is the key. Have food, will travel! Don't leave home without it! I have to push myself to prepare my own food sometimes, but I'm always happy when I do. Being gluten-free is well worth the effort.

Each of our stories is so unique, yet there are also so many common threads. Thanks to everyone for sharing your story. We're all helping each other in a BIG way!

Take care, all - Toni
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#17 enigma

 
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Posted 02 January 2004 - 06:44 PM

Hi and Happy New Year! I' ve had celiac disease for over 12 years and it's been a long hard haul. Don't want to bore you with all the details but I was at first dx'd with IBS and lupus before they found the celiac disease. By that time I was SO sick I thought I was going to die! When I first went ignorantly semi-gluten-free the change was drastic! The lupus symptoms cleared up as did the IBS, of course. It took several years before I came close to a totally gluten-free diet and added vitamins to the regime. That made another big improvement. But I still had nagging problems for years, and doctors were no help, so from the good advice of people on this site I began a food diary and discovered that starchy products (white rice, rice noodles, etc.) also were giving me problems. Once I cut those out of my diet I finally felt healthy again and am happy to report that I am now doing great! New celiac disease'ers are so lucky to have this site and the wealth of info it offers!
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#18 Marybet

 
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Posted 02 January 2004 - 08:12 PM

I was diagnosed 3 months ago. I do feel a little bit better but still not good. I am 40 years old and have suffered with assorted symptoms most of my life. I am very depressed by the weight gain, although I am greatful to be getting my energy back. I am still searching for good gluten-free food.
My children have had a blood test and they were both negative. I am however still concerned, my 9 year old son has many similar symptoms as I did but the pediatrition sees no need for any further tests. I am the youngest of a large family, only one sibling was willing to be test, he tested negative. I suspect my sister also has Celiac but she does not want to deal with it.
This has been a challange but I look forward to feeling better. I am greatful I found you all. My doctor gave me very little information. He told me not to go out to eat ever again, don't let anyone else cook you food,he told me to eat meat, fruit, vegetables and don't take Communion at church. I went to a dietition who knew nothing about the disease. She gave me a flier for a health food store and said good luck.
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#19 midnightjewel40

 
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Posted 03 January 2004 - 05:49 PM

:D hi there i have had celiacs for about 14 months now or should i say i found out i had it then heheheheh my youngest daughter has just had the tests and although they said the gut was ok she has a wheat intolerance so i have started her on my diet and she like it she misses the cakes and things but she did eat too much of them anyway she is 15 years old i am getting there still have days when i feel yuk but i bet we all do love this site
jacque
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Hope you have a great day
Jacque.
my 15 year old and i are both celiacs

#20 lily80

 
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Posted 05 January 2004 - 02:21 AM

Hi everyone,

I have looked at this message board for months and have finally need to have my say. I live in Australia and was diagnosed with Celiac disease in November 2002. Prior to diagnosis I was dismissed by the medical profession and it was a chance meeting with a surgeon who persuaded me to undergo a biopsy. Surprise, surprise it showed I have celiac disease. I still struggle to cope with the disease as I have found so many are quite ignorant as to what it is and I think I will scream if one more person states "A little bit won't hurt you"! :angry:

My biggest issue is the associated weight gain with the gluten free diet. I am 1.59m tall and weigh 80 kgs. I have put on 20 kgs since going on the diet. :( I find that none of the weight loss plans can assist as they all involve food that is inedible. I find diets difficult and exercise is difficult also. I need help. Does anyone have any good advice? Has anyone else experienced horrendous weight gain since going on the diet? I am 35 years of age and weight more than when I was at full term pregnancies with my children!!
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#21 enigma

 
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Posted 05 January 2004 - 12:22 PM

Hi Lily80,
Do I ever hear you and understand! I even had several doctors over the years tell me that a little bit of gluten wouldn't hurt! As for the weight gain, I did the same exact thing - getting heavier than I ever was while pregnant! Bummer!:( But I just have to tell you that I just recently lost over 20 pounds by finally trying a low-carb high-protein diet. I don't know if the Atkins diet is popular in Austrailia but please try to research it. It's the only diet I've been able to stay on and lose weight on and I've been trying for about 10 years. It's almost naturally gluten-free beacuse you eat all the eggs, cheese, meat and low-carb vegetables you want. The books by Dr. Atkins have delicious recipes included. I feel great now and want other people who need to lose weight to be able to experience this. Good luck! :)
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#22 seeking_wholeness

 
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Posted 05 January 2004 - 12:33 PM

Hi, Lily!

Have you looked at the book _Eat Right 4 Your Type_ (and its sequel, _Live Right 4 Your Type_)? It is based on the premise that different people need different foods/diets and that your blood type (or, more accurately, your "tissue type," since the markers are present on every cell in your body) plays a large role in determining which foods help or hinder proper body functioning. It may sound hokey at first, but it does make sense when you read the background. I picked up the book so I could laugh at it and ended up on the (Type A) diet! ALL of the blood-type diets can be made gluten-free easily, and they all emphasize high-quality unprocessed or minimally processed foods, which are better for the body, anyway. Optimal exercise is also addressed. I hope this helps!

--Sarah
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Sarah
gluten-free since November 1, 2003

#23 wclemens

 
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Posted 07 January 2004 - 01:06 AM

Sarah, your comments about your mom thinking your symptoms were all in your head hit home with me, and perhaps with others. Celiac symptoms present themselves in so many ways, that it sometimes takes years and years to realize what is causing our distress.

Family members watching us go through so much pain are often stymied as to know what to think. I personally tried every route to health that I could think of or would come across during the years when I didn't realize what was happening. I think it is only natural that my family would watch in amazement, never knowing what I would be trying next.

Now that I know that my symptoms are caused from eating wheat and grains, along with allergies to milk, dairy, egg whites and yeast, and now that my new grandson has been diagnosed with gluten sensitivity and allergies to milk and dairy, it makes more sense when experts say to, "Have everyone in your family tested--this is a genetic disease!"

We probably all have family members who will eventually have to modify their diets to remain gluten free, in order to maintain good health. We'll be able to help them on their paths to recovery then. It makes all our suffering worthwhile when we can help someone we love. Welda
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#24 ksander

 
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Posted 07 January 2004 - 04:27 AM

I find the information in this message board very helpful as a newly diagnosed.

k.
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#25 Guest_Libbyk_*

 
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Posted 07 January 2004 - 04:40 PM

hello all- I feel like such a celiac baby, dianosed last week.

I have felt "icky" for over a decade now, given the usual answers of "maybe you have a parasite, here's a triple dose of Flagil" and "its just IBS." Not too helpful either one. So many times I was so sad, and frustrated and angry, even though I could see that my life was wonderful. I got diagnosed after being violently ill for three weeks, and spending some time in the hospital. Eventually my Incredible, Powerful, Mama-Bear mother said, that she wasn't taking me home until they found out what was wrong with me. One quick endoscopy later, we had an answer.

I have been gluten free for 6 days now, and I feel wonderful. My doctor says that it is the steroids I am on to supress my immune response. I know that it is deeper than that. I can feel that I am not "under attack" by a mystery source. I am still weak, but stable, and happy, and recovering.

All in all, I feel wonderful, and a large part of that is due to the thoughtful postings on this site. I love to hear all of your experiences, both familiar and new to me. I am so grateful to have a place to ask real people (those who actually live with this every day) questions. And there are many. thank you so much.

Libby

ps- I am only 23, and so grateful to have been dignosed young.
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#26 Guest_eileen_*

 
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Posted 07 January 2004 - 06:08 PM

I have been gluten-free foor 4 months now and I do feel better. the diaherra has stopped and the abdominal pain has stopped. I do still have some bad day of fatigue.
I have learned so much from this site. It has be a life saver.
I hope that the years to come are better than the past 55years and I am feel so positive now that I can hear what others have been through, don't feel so alone with celiac disease.
THANK YOU
eileen :D
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#27 Guest_aramgard_*

 
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Posted 10 January 2004 - 02:15 PM

Hey Darwyn, Welcome. I am 69 and holding, was diagnosed 3 years ago. I've had Celiac since I was around 14--with severe allergies first, then the dermatitis which the doctors thought was psychological--then alternating diarrhea and constipation. I was terribly thin until I broke my leg at age 38 and then began to gain weight. No one ever suggested Celiac disease until I saw Danna Korn on TV talking about her son. I went on the web looked at the symptoms and since I was dreadfully ill asked for the testing. After my doctor picked himself up off the floor because I tested positive, they did a biopsy and it also was very positive--no villi. When I think back about all the doctors who said I was a hypochondriac, I could just smack all of them. Stay with us, we've all had much of the same experiences as you with our health. And we really need to support each other, because the health care system really doesn't seem to care. Hang in there and feel better. Shirley
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#28 lily80

 
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Posted 14 January 2004 - 03:11 AM

Hi everyone,

I would just like to say that we all seem to have had similar experiences over the years trying to find out why we all felt different, bloated, ill, psychopathic, being labelled a hypochondriac, and simply misunderstood. It took me years to find out why I was suddenly constipated and then had 'the runs' quite badly. I laugh now at all the times I went to doctors with dermatitis, etc, etc, only to be told that there was nothing wrong, and to "be a good girl and go home and rest". I can laugh now as, I have the last laugh being diagnosed as a chronic celiac sufferer. In terms of the depression, I suffer that too. I hate having to explain to most people that I do not have a communicable disease that can be caught by simply being in my company. I have made it my ambition to try and educate the rest of the population about celiac disease, and that it has nothing in common with leprosy or SARS! :lol: :lol: For all of those of you who are recently diagnosed, this is a life changing event. On the positive side, you WILL feel better, this is NOT in your head, you are NOT feeling ill to gain attention, you are NOT crazy! On the negative side, there will be persons who will not 'get it' and still try and feed you cake, biscuits, etc. You will feel isolated and a bit lonely sitting in the corner with your gluten-free lunch, trying to explain to your colleagues that you are not on a diet, but have dietary issues. Sorry, I sound very frustrated, but I am! Keep posting your messages on the board, and ask questions. It has been my experience that this is an individual thing, and some will have similar symptons and really suffer once they ingest gluten and others will not. I have found going to the gastroenterologist somewhat unpleasant as all he does is lecture me about my weight. He does not suffer celiac disease! I would also like to know if any of you have been diagnosed with other medical issues that are related to the celiacs. I have been diagnosed as having Osteopenia, which is the prelude to Osteoporosis. At the ripe old age of 35, this is a bit scary. I have also been told that having this disease also places us all at a 50% more chance of developing soft tissue cancers such as stomach, and bowel to name a few. Has anyone else been given this advice? Did any of you have to see a dietitian upon being diagnosed? I would like to know and if this was helpful. Talk to you all soon.
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#29 seeking_wholeness

 
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Posted 14 January 2004 - 08:13 AM

Lily,

I believe I have read that the increased cancer risk applies to *untreated* celiacs, while those of us who are successfully healing on a gluten-free diet have about the same risk as the general population.

Since I am self-diagnosed, I don't know whether I have any associated conditions or not--but I wouldn't be surprised to learn that I have osteopenia/osteoporosis, especially since I experienced quite a bit of bone pain during adolescence. I am pretty sure I would benefit from some sort of specific nutritional supplementation, and my naturopath would be delighted to run tests to determine exactly what sort, but I can't yet afford the testing!

It's too bad that your doctor doesn't seem to realize that your weight will probably start to normalize on its own as your body heals. It is unfortunate that many people tend to be more free with criticism than they are with empathy and compassion!

On a happy note, my 89-year-old grandmother is trying really hard to wrap her mind around the idea that some foods are poisonous to my system. (It's difficult for her because she is as healthy as a horse--I certainly didn't get my celiac disease from her!) I was talking to her on the phone last night, and she said, "Oh, Sarah, I saw in the paper that the medical column was about celiac sprue, so I read it and thought 'yes, yes, Sarah has been telling me all of these same things about wheat, barley, and rye!'" That made me happy! :lol: I doubt she will ever truly "get it," but she's not so skeptical anymore, and that makes me feel better.

I hope you're doing well!
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Sarah
gluten-free since November 1, 2003

#30 Delta32

 
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Posted 14 January 2004 - 10:25 AM

lily....
Before I was diagnosed with celiac disease, I was in really bad shape... But mine seemed to be more neuro than anything.. Muscle pain, dizzyness, extreme cloudiness, ataxia, but I have had stomache problems since I was a child. I was seeing doctors for the completely wrong areas.. I would have chest pain and whenever i ate something, my heart would race... Just alot of wierd things... everyone told me I was crazy... I was diagnosed with osteopenia, and the docs were clueless as to why... I had another episode and landed in the ER where they told me that sodium and calcium are low... just go home and put more of those in my diet... I am a 24 year old college student, and pretty much lived on fast food... so i knew the problem was not lack of them in my diet.. (which i tried to tell them with no avail) I made myself an appointment with a GI, and they did a complete blood work up.. when the doc got the results, he called me to his office and told me that I had celiac disease... I was immediately like O MY GOD!! HOW LONG DO I HAVE!! lol.. having never hearing of it and being soo sick... I was terrified when I first found out I had osteopenia and they told me it could be leukemia... and that was just a few short months ago.. But I have done my best to be gluten free, and I have been with any exceptions of accidental ingestion... it's just so frusterating.. alot of things are sooo much better, but some things are beter for a few days and back again... So you're not alone in the osteopenia.. I read somewhere that 50 to 75% of people dx'd with celiac disease will have osteopenia or osteoperosis.. Has anyone taken the actonel and had any reactions?
~erich
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