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


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35 replies to this topic

#31 Guest_LisaB_*

 
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Posted 14 January 2004 - 01:16 PM

Hey guys about the osteoperosis, you may want to read this: http://www.celiac.co...-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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#32 JEB

 
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Posted 22 January 2004 - 08:55 AM

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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#33 Guest_aramgard_*

 
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Posted 23 January 2004 - 11:08 AM

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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#34 Celiac-teen

 
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Posted 24 February 2004 - 04:04 PM

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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#35 faith

 
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Posted 06 April 2004 - 06:47 AM

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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#36 jen-schall

 
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Posted 01 May 2004 - 12:13 PM

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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xo Jen

when I look around, I think this,
this is good enough
and I try to laugh at whatever life brings
because when I look down,
I just miss all the good stuff
and when I look up,
I just trip over things




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