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53 replies to this topic

#1 Razzle Dazzle Brazell

 
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Posted 23 June 2012 - 03:00 PM

Hey guys your opinion: My doctor is considering putting me on prednisone to treat my overactive immune system. I am scared to death to take it again because it made me very ill last time. Tachycardia and extreme restlessness and unresting mind, prednisone made me stay awake for days and landed me in a mental hospital with hallucinations. Why? Is there something else that i can take to calm my haywire immune system?
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

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#2 bartfull

 
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Posted 23 June 2012 - 03:58 PM

You have DH, don't you? If I am correct, that is the only reason I would even consider going on prednisone. I understand the itching can drive one crazy, and in that case it might be worth it.

But my doctor and his nutritionist told me that MY immune system was in hyperdrive too. I was reacting to everything, not just grains. I couldn't eat ANY fruit except bananas, no veggies except broccoli and cauliflower worked for me. I was almost afraid to eat.

It took almost a year on a VERY limited diet, along with some vitamins before things improved. I have been able to add a few foods back just recently. I would like to try adding a few more, but I'm going to wait a few months. I am not going to take a chance on anything and ruin my newly found good health.

So if the DH is too much to handle, maybe prednisone is the way to go. But if not, I would just give it some more time. I know that's hard to hear, but believe me, this past year just flew by.

I hope you're feeling better soon.
  • 0

gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#3 GF Lover

 
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Posted 23 June 2012 - 04:06 PM

Hey guys your opinion: My doctor is considering putting me on prednisone to treat my overactive immune system. I am scared to death to take it again because it made me very ill last time. Tachycardia and extreme restlessness and unresting mind, prednisone made me stay awake for days and landed me in a mental hospital with hallucinations. Why? Is there something else that i can take to calm my haywire immune system?


I've gone the steroid route myself for controlling autoimmune disorders. You can try methotrexate, Dexomethosone. And I'm sure there are afew more. Take the smallest amount possible to get the desired effect. I hated every pill I had to take and for me the best outcome was not enough for me to confine for over a year. I just stopped mine in Feb this year. But also since going gluten free alot of the inflammation that the steroids are supposed to control has greatly reduced, so that is good for me, no steroids, no inflammation. Good luck with water your going thru. Be well.
  • 0

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#4 roxieb73

 
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Posted 23 June 2012 - 04:22 PM

:( Not a lot of options with steroids. I wouldn't go back on it after that kind of a response. Ask about Dexamethasone. ;)
  • 0
GI confirmed Celiac 08/2012
Double DQ1 subtypes(5,6)
Severe Vit D defiency
Iron Defiency Anemia
Gluten Free and on my way back to good health

#5 Razzle Dazzle Brazell

 
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Posted 23 June 2012 - 04:32 PM

You have DH, don't you? If I am correct, that is the only reason I would even consider going on prednisone. I understand the itching can drive one crazy, and in that case it might be worth it.

But my doctor and his nutritionist told me that MY immune system was in hyperdrive too. I was reacting to everything, not just grains. I couldn't eat ANY fruit except bananas, no veggies except broccoli and cauliflower worked for me. I was almost afraid to eat.

It took almost a year on a VERY limited diet, along with some vitamins before things improved. I have been able to add a few foods back just recently. I would like to try adding a few more, but I'm going to wait a few months. I am not going to take a chance on anything and ruin my newly found good health.

So if the DH is too much to handle, maybe prednisone is the way to go. But if not, I would just give it some more time. I know that's hard to hear, but believe me, this past year just flew by.

I hope you're feeling better soon.


Thanks for sharing your own experience. That is very encouraging. I was hoping things would settle down but i was never this haywire until porpuseful daily glutening for the celiac test. I just dont know what is safe myself as if gluten free isnt hard enough already. I guess i need to just eat like a bird and slowly introduce foods and see what my body likes and what it doesnt like. I do have several IGE allergies: oats, ragweed, oak, walnut, and a bunch of other pollens im allergic too. Dairy goods make me bloat too. The biggest problem for dealing with all this is that i get sooo very hungry it is crazy how hungry i am. Gluten diet will do that to me and idk how long until that calms down. This is all causing bad anxiety and i am depressed

Today i have taken a huge downswing and feel like i just want to give up, like im wandering nowhere in life and will never find my way out. I havent felt that way in a long time. I know those feelings will pass though so im trying to hang in there
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#6 Razzle Dazzle Brazell

 
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Posted 23 June 2012 - 04:38 PM

I've gone the steroid route myself for controlling autoimmune disorders. You can try methotrexate, Dexomethosone. And I'm sure there are afew more. Take the smallest amount possible to get the desired effect. I hated every pill I had to take and for me the best outcome was not enough for me to confine for over a year. I just stopped mine in Feb this year. But also since going gluten free alot of the inflammation that the steroids are supposed to control has greatly reduced, so that is good for me, no steroids, no inflammation. Good luck with water your going thru. Be well.


Thank you. I will ask my doctor about those and see what he says. I really hope i can get back on the right path with that little boost ;)
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#7 Razzle Dazzle Brazell

 
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Posted 23 June 2012 - 04:53 PM

:( Not a lot of options with steroids. I wouldn't go back on it after that kind of a response. Ask about Dexamethasone. ;)


I know. I honestly would rather die than go through that again. I wouldnt wish it on hitler. It was really horrible. I was awake but it was like being in a night terror everyday which was worsened by my lack of a memory and a severe UTI infection with I.C. (that pain and i didnt have the ability to express it as i was doped up) They put me on resperidone and it took months to wing off of it and months to recover afterwards. I told him no the moment he mentioned prednisone lol.

I will only take a small dose and it definitely has to be something beside prednisone.
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#8 Skylark

 
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Posted 23 June 2012 - 05:24 PM

Look into low dose naltrexone. It didn't do much for me but some people find it really helpful.
http://www.lowdosenaltrexone.org/
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#9 Razzle Dazzle Brazell

 
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Posted 23 June 2012 - 06:18 PM

Look into low dose naltrexone. It didn't do much for me but some people find it really helpful.
http://www.lowdosenaltrexone.org/


Okay i will mention it to my doctor most definitely will ad it to the list of potentials. Thx Skylark
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#10 Marilyn R

 
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Posted 23 June 2012 - 07:42 PM

Hi Razzle,

I've only had steroid ointments, never have taken prednisone, but have 2 girlfriends who road that roller horror coaster.

I keep xanex .5 mg on hand. I don't take it very often, a prescription of 30 pills will last me 4 months or longer. I cut them in half when my skin is crawling, take a whole pill if something major happened. My friend says Ativan is better but xanex generic works so I never tried the
Atovan. I have a hard time with meds. Most OTC stuff makes me break out in hives, has for years. Benadryl makes me climb the walls! In case you aren't familiar with that drug, it's an anti-anxiety drug.

I'm not saying that will work for you, but it's been a lifesafer for me.
GL!
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#11 ~**caselynn**~

 
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Posted 23 June 2012 - 07:47 PM

I've only has prednisone a couple times, but I loved it! It made me feel a thousand times better and I had more energy than super woman lol the things I accomplished on it was awesome! But the highest point was how awesome I felt, just amazing...but I didn't get any sleep...that's a downfall.
  • 0
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#12 ravenwoodglass

 
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Posted 24 June 2012 - 03:03 AM

Hey guys your opinion: My doctor is considering putting me on prednisone to treat my overactive immune system. I am scared to death to take it again because it made me very ill last time. Tachycardia and extreme restlessness and unresting mind, prednisone made me stay awake for days and landed me in a mental hospital with hallucinations. Why? Is there something else that i can take to calm my haywire immune system?


If you can be patient (I know that is hard) being on the diet will calm down your immune system. Your immune system is in hyperdrive because of the antibodies and once those resolve you will be feeling a lot better.
I was allergic to 98 out of 99 things my doctor tested me for pre-diagnosis and that was one of the biggest clues my doctor had that despite my false negative tests I was celiac.
With the reaction you had the last time you took the drug I am surprised your doctor is even suggesting it.

edit:
I just noticed you mention being on gluten again for testing. Are you still on it? If so why as you are so clearly reacting badly. If you have recently stopped the challenge it will take some time for the reaction to pass but it will. Go with whole foods to satisfy the constant hunger. That will pass also as it is likely your bodies need for nutrients that is causing it. It is common for those of us who are newly diagnosed.
  • 1
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#13 squirmingitch

 
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Posted 24 June 2012 - 04:28 AM

Razzle gal, IMHO Ravenwood makes a lot of sense. I had been on Dexamethasone when i was misdiagnosed as hives for my dh. THEN, later I got an epidural in my spine & the doc gave me Dexamethasone (Dex). Effed me up real good! He didn't tell me he was going to use Dex or I would have told him to back off Jack!
Anyhow, even when I was on the dex pills --- I even cut them down to 1/8th & I was bouncing off the walls big time. Awake for 7 days & 7 nights straight. Yep, I felt like Superwoman only there's no place in this world for Superwoman with an attitude & I mean a BIG attitude! MEAN, MEAN, MEAN!
Everyone is different so I'm just telling you how it affected me. I have a girlfriend who gets bad poison ivy & her doc gives her a cocktail shot containing Dex & it does the same thing to her as me. Oh yeah, it gives both of us "D". She cleans the house spic & span at 3 a.m.Posted Image
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#14 Razzle Dazzle Brazell

 
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Posted 24 June 2012 - 06:21 AM

If you can be patient (I know that is hard) being on the diet will calm down your immune system. Your immune system is in hyperdrive because of the antibodies and once those resolve you will be feeling a lot better.
I was allergic to 98 out of 99 things my doctor tested me for pre-diagnosis and that was one of the biggest clues my doctor had that despite my false negative tests I was celiac.
With the reaction you had the last time you took the drug I am surprised your doctor is even suggesting it.

edit:
I just noticed you mention being on gluten again for testing. Are you still on it? If so why as you are so clearly reacting badly. If you have recently stopped the challenge it will take some time for the reaction to pass but it will. Go with whole foods to satisfy the constant hunger. That will pass also as it is likely your bodies need for nutrients that is causing it. It is common for those of us who are newly diagnosed.


Yes i did stop the gluten challenge. I could not handle it anymore I was in so much pain. I hope my immune system will calm on it's own because money is an issue. I am just concerned that I am getting glutened still because of CC issues. Im in the process of buying my own kitchen supplies right now.

Eating whole foods is a good suggestion. Should i be wary of condiments like mayonnaise? I am trying to increase fats in my diet because my skin shows evidence of a severe lack in natural oils but more fat means a more sluggish system.
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#15 squirmingitch

 
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Posted 24 June 2012 - 06:27 AM

If you can stay away from condiments all the better! Mayo has dairy & often soy unless you get Hellman's Canola Oil mayo but it will still have some dairy & further it IS a processed food. If you can't live w/o it then use it very sparingly.
For the fats --- you need those to help process protein. You can stir fry in canola, or olive oil. Use olive oil & vinegar for your salad dressing. Eat nuts = fat + protein.
Another note on the condiments is that unless they're squeeze bottles then if anyone sticks a gluten knife in it then you have cc in the mayo, catsup etc....
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 





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