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karoyse

Member Since 05 Oct 2012
Offline Last Active Mar 26 2014 09:32 AM
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Posts I've Made

In Topic: Barretts Esophagus And Acid Reflux Meds Causing Severe Mucle Pain

22 October 2012 - 05:27 PM

I don't have advice on the meds. Was surprised to see that you were diagnosed with many of same issues as I have been in past. 1st in early'90's, I had endoscopes every 2 yr. due to Barrett's Esophagus, partially caused by hiatal hernia thus on Prilosec or Prevacid for yrs.
When I went thru menopause, Doc tried many Rx hormones incl. patch, but all made me worse & bio-identical hormones not available locally. In 2000, a doctor diagnosed thyroid disease which helped immensely---levoxyl works better than synthroid for me. Eventually dosage split for me by an endocrinologist so my levels are more stable. Used to yo-yo between yearly physicals. Barrett's Esophagus DX removed from my ailments, but still had Gerd. Finally,in 2007 DX w. Celiac due to Anemia, which I had never had prior. I have adhered faithfully to gluten-free diet & have blood antigen tests yearly to show below "normal" cut-offs for gluten sensitivity. Never knew what a true reaction to gluten was before DX ---
Now I know the stomach pain, Gastro effects, & sudden sickness of accidental gluten.
Red Lobster /shrimp scampi was the latest culprit . Usually would only eat their fresh fish.
See a dietician & follow gluten free religiously & you should see results. I thought it had cured me of many ailments, but did have to go back on allergy shots recently for grass, so no longer expect miracles. Good Luck w/ Meds.

SKATJ
Does sound familiar. I am 54 and had my thyroid removed when I was 13 years old. It is amazing how much your thyroid effects. I have had to have my thyroid dose changed so many times I can't keep up. My weight has went up and down like yo yo too. I get anemic easily. Thank God for the Bio-identical.I don't think I could have gotten this far with out them. I didn't realize they weren't available everywhere. My hormones were so low it even shocked the Dr.
Glad your Barrett's Esophagus is removed. I was wondering if it would get better or go away.
I pray gluten free does help. My stomache has really started to bother me with out the reflux meds. Hopefully will get something tomorrow. It helps hearing from you and seeing thing that helped you and other's.
I'm trying not to feel sorry for myself as I see what other 's here are dealing with but sometimes it just feel's like what else can come at me.
Thanks for the post best of luck and better health
Kim

In Topic: Invisible Disease: You Look Healthy

22 October 2012 - 12:10 PM

Diana
Yes the last two years have been the worst but I think I might have had it longer but because all the other medical issues I thought were the reason I felt so bad.
Now I am dealing with the meds and Doctor trying to see what kind of reflux meds I can take. The Dr called in a new one and now my insurance won't pay for it. I don't really want to take any but the Dr said with Barretts that could lead to cancer if I don't get the acids under control. Sometimes I feel like banging my head against a wall. Nothing is simple anymore.
Sorry I am done whinning now.
Have you been getting better since going gluten free? I have been reading so much trying to find if everything I eat or touch has gluten in that my eyes are crossed. I hope I can get to the point I can relax and enjoy eating again. Also just trying to find my way around these forums. I am not the best at computers.This brain is on over load.:)
Take care and Thanks
To better health
Kim

In Topic: Invisible Disease: You Look Healthy

22 October 2012 - 07:40 AM

Thanks, and I hope you will have the energy you need. How long have you been gluten free? I think we better be able to tell the next guy about celiac. Their loved ones, or they themselves may be suffering.

Hi, I just got DX on Oct 1st and have been trying to be gluten free. it is so over whelming trying to figure out what you can eat. Going out to eat is nightmare. Just having the energy to get my kitchen gluten free and keep things away from the things that aren't is just too much at times. Not to mention the cost of the food you have to use for baking. Plus trying to make family and friends understand why you have to be so careful.
Sorry I needed to vent. At least here I know you understand.
Thanks
I am just looking for the light at the end of this tunnel.:)
Kim

In Topic: Invisible Disease: You Look Healthy

22 October 2012 - 05:36 AM

I know exactly what you mean. I just got DX but for the last two years i have felt like the walking dead and most people just don't understand it isn't by choice that I feel this way.
I feel bad when I am in so much pain I can't get down on the floor and play with my grandkids. My husband was really getting mad at me until I got DX with Celiac's but now I think he starting to try and understand. He has just retired and is full of energy and life. He wants to go out danceing like we used to but I just am not up to it. I was always very active until this.
I am a Custodian at an elementary school with 500 kids. Its a hard job even when you feel good. It's all I can do somedays to just get my job done. I keep wondering how much longer I will be able to work.I know people are wondering why I am not the same person I used to be.
I am praying going gluten free will help. Since people can't see what is happening to us they just don't understand. Until I found out about Celiac's I really wondered what was happening to me and I had heard about Celiac's before this. Why isn't there more awareness?? I had heard on people not eating gluten but really didn't understand why. Now I do !!
Hope for better health
Kim

In Topic: Barretts Esophagus And Acid Reflux Meds Causing Severe Mucle Pain

21 October 2012 - 02:43 PM

Thanks so much for the replys and thoughts. I have been taking vitamins but thought the same maybe i was deficient but I has a blood test last week and everything came back good except the Iron levels. I started more iron now.
I have really been trying to be gluten free but I am new at this so hopefully it will start to help.
I really didn't notice a lot of stomache problems before my DX. Just once in a while D & C. Only heartburn if I ate spicy or greasy foods. Now since I have been on 5 different Meds for acid reflux my stomache hurts and feels bloated.
The cough at first was the big problem because I wouldn't catch my breath.( that was from the Barretts Esophagus the Dr' said) The Meds helped with that but after a while the muscle pain was awful.
I haven't taken it for three days and the muscle pain is gone & no cough. I'll call the Dr. tomorrow and see what he has to say but I don't know what else I can take and it's getting expensive.
My thyroid problems have always been an issue. I had to have it removed at 13 years old and it has been a real pain with my weight and hormone levels. I have had a weight problem all my life because of this and major PMS problems and now Menopause H____.
I am on the strongest Bio Identical hormone replacement they make and a .175 synthyroid. ( My synthyroid has to be changed often)
I first I thought 2 years ago I felt so bad because of Menopause but even with the Bio I still was real foogy and emotional. After reading these forums I see celiacs can cause a lot of my symtons too.
I see this will be a long time learning what my body can and can't handle. I went to a health food store today and they gave me some ideas about what might be causing the muscle problems. Will see what the Dr says about it too.
Having these forums and the info on this site has helped a whole lot.
Can't blame Celiac's on my spelling though.HA
Thanks again and I will be checking back and learning more from you all who live with this. You are the only
one's who truly understand what this is like.
Kim