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How Long Have You Been Gf And How Do You Feel?
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36 posts in this topic

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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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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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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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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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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Hey guys about the osteoperosis, you may want to read this: http://www.celiac.com/cgi-bin/webc.cgi/st_...-52104104611.2b

I personally take Natural Calm which states that it is gluten free on the bottle and is taken in liquid form and is highly absorbable, I guess not all magnesium is absorbable. Anyway, it has helped me in other ways, my nerves are getting better for the first time in my life and it helps with constipation which is why I tried it in the first place and found out all the rest later.

Lisa

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Seven months ago, I broke out in hives that turned to blisters. My dermatologist ordered a panel of blood test but came back negative for celiac. Then, after six months of watching this spread over my body and scalp, he biopsied a blister that came back consistent with DH. I ran to the internet and discovered the celiac link. I called my gastroenterologist and scheduled the test. ( He was the same one that diagnosed me with IBS 25 years ago. ) He said it was a waste of time but ran the test which came back positive. Two weeks gluten-free and all the GI symptoms were gone. Unfortuately, I was now on Dapsone. My folates are still out of range and I am anemic because of the Dapsone.

Over the years there have been so many unexplainable medical events in my life. One of them was two years ago, when I started having retinal bleeding. I lost the sight in one eye. Since being gluten-free, that eye has stablized and the "good" eye has cleared. Good medical support is the most challenging thing about this disease. Finally, we traveled 500 miles to the University of Chicago celiac center where the right tests for absorption were done. Getting diagnosed early would have been a blessing. Now, my daughter can benefit from this knowledge.

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Yes, getting diagnosed early would have been a help. I was only diagosed also after insisting on the testing, which was confirmed by biopsy. But my first indication was "exzema" at age 14/15. The DH is a real problem. If I were you I would wean off the Dapsone as quickly as possible. Get yourself a cast iron skillet, which will help increase your iron stores and give you more energy. I know, that sounds really silly. But years ago I read a study that when women started using non-stick skillets, they became more anemic. As for the itching, I now use an over the counter cortizone ointment with aloe now and it works just fine. I've been gluten free for 3 years and the rashes are now beginning to subside. Good luck. It's a long hard course for us Celiac's but we will overcome. Shirley

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Hi, I'm Tyler. I have only been on the diet for 3 weeks now, but I can already tell the difference! Before switching my diet, I was tired 100% of the time and I had many symptoms like ulcers in my mouth, upset stomach, fatigue and I also had hives. Yah...not very fun. Anyways... my grandfather and my dad have Celiac so that's how I found out about it. But it is easy for me to be on the diet since my mom is used to cooking gluten-free meals for my dad.

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lily 80: I was diagnosised with celiac disease 4 months ago I also have DH, it took me almost a year to get diagnosised, after I lost 72 pounds within 4 months!! Was very sick DH rash kept getting worse, finally the ER Doc called a GI Specialist told about the rash and fast weight loss, vomitimg, diareaha/constipation, tired all the time, and increased liver enzyme level, the GI Doc said have her come in to my office first thing in the morning I know what this is. So I went in and he told me about celiac disease that next day he had blood work done and did an endoscopy and biopsied the sm. intestine. Sure enough it came back as celiac disease. I am doing so much better I'm still getting used to the diet so I have times I have gluten by accident , but its like 90 % better, I'm keeping food down!!! About the intestinal cancer, I want every one to read this and pass this on!!! My aunt had celiac disease for 30 years she did good on the diet for a long time but then went off of it, cheated alot here and there it adds up! She started feeling bad, had CTs, MRI, xrays, endoscopys, everything came back nomal, finally a doctor went in and done a laporscopy outside of the intestines, where they found cancer lymphomia it was around the liver and bile duct, they sent her to IN. to try to take the cancer out, thought they got it, but she got sicker , they went back in done another laporscopy and closed her right up, it had spead everywhere, they sent her home to let hospice take care of her, she died 2 months ago all of this took place within 7 months!!! It was a terible painful death, she told me to really stick to this diet, because a bite here and a bite there adds up to alot of damage. So please make sure your doctors don't just do the endoscopy to check on the progress of your celiac disease, if you notice even the littliest change in your norm health, ask for a laporscopy to look outside of the intestines, our liver, pancreas, bile dust, all are at greater risk for cancers, and to really see things well you need a laporscopy, remember she had the CTs, X-rays, blood work, MRI, everything kept showing up normal!!! Also I suffered from migraines for over 20 years, once I got on the gluten free diet- Don't get them, unless I have an accident! Amazing-huh? The best of luck to all God Bless and you all are in my prayers! Faith

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my blood tests (antibodies) showed up positive for probable celiac disease in late November, and my EGD tested positive in late December. after going gluten-free for several weeks, the improvement in how I felt was amazing, although I was still hugely fatigued. it just made such a difference not to be throwing up, or feeling like it, all the time, at every meal! and to finally know why that had been happening!

unfortunately, in about March, I started feeling almost as bad as ever. my antibody levels still showed significant gluten intake, even though I had been really vigilant, I thought. I found out a few things I had overlooked, and I'm being even more careful now (chapstick? otc meds? dental floss?) and things are improving.

the more I read about it and the more info I get, the better I feel. the same with cooking/baking. I never EVER made meals before. Now I've made the transition at least part-ways and it's empowering. I know I have a long way to go, but I finally have a lot of hope about the journey.

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    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
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