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#1 HulaGirl

 
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Posted 16 June 2008 - 07:15 PM

Hello,

I am new to this forum and wish I had found it sooner because reading all the posts have helped my emotional outlook for getting well. That being said:

I am 40 and have been ill since 15.
I have Silent Celiac, lots of symptoms just not weight loss or diareha.
Just diagnosed Oct 2007 blood test, endoscope, visual.
8 months gluten-free and today my IgA is normal and CRP normal.

My muscle pain and fatigue stopped the first month (previously diagnosed Fibromyalgia) but then I started getting muscle spasms in old injury sites. I tried fluids, elctrolites, vitamins, chiropractic, acupuncture, massage. They are like bandaids and help for short periods. My upper back is the worst and it travels into my right eye to become a migraine. If I limit upper body usage I can avoid it. Even Physical therapy causes to much pain.

My most worrisome symptom is a skin reaction which is like a flushing of the whole face, neck ring, inside my forearms. It gets worse when I move around. Better when I rest. Sometimes nothing helps. It goes away for a week for no reason then starts again. I also have itching where I am red. Also itching palms, feet, armpits, upper back, groin.

Doctors have been telling me it is histamine production and are concerned I will go into anaphalaxis only because I have a history of it from medicatons like Codiene, Penicillin, Ultram. I tried all the anti-histamines with no relief and they made my muscle spasms spread to my diaphram and I could not breath (I do not have Asthma). I stopped them and thankfully that is over. I have done many food elimination diets to try to pin point the problem. All have failed. Nothing seems to be a common factor in the trigger not even stress. I am now eliminating Ibuprophen which is the last OTC pain med I am not allergic to.

The red and itching started when I went gluten-free. I have since stopped eating gluten-free products which all have soy and am eating fresh fruit, veggies, fish, rice. Thats it.

I see a dermatologist in July to see if maybe its a form of eczema.

Does anyone else have a story to tell that could point me in a direction I haven't taken?
I had skin and food allergy tests done already without any help to find the cause.
I saw a neurologist and had a head MRI normal.

I realize each person's recovery is as unique as they are as individuals but am hoping someone here may have a brainstorm for me.

Aloha
Hula Girl
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#2 mushroom

 
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Posted 17 June 2008 - 01:38 AM

Hello,

I am new to this forum and wish I had found it sooner because reading all the posts have helped my emotional outlook for getting well. That being said:

I am 40 and have been ill since 15.
I have Silent Celiac, lots of symptoms just not weight loss or diareha.
Just diagnosed Oct 2007 blood test, endoscope, visual.
8 months gluten-free and today my IgA is normal and CRP normal.

My muscle pain and fatigue stopped the first month (previously diagnosed Fibromyalgia) but then I started getting muscle spasms in old injury sites. I tried fluids, elctrolites, vitamins, chiropractic, acupuncture, massage. They are like bandaids and help for short periods. My upper back is the worst and it travels into my right eye to become a migraine. If I limit upper body usage I can avoid it. Even Physical therapy causes to much pain.

My most worrisome symptom is a skin reaction which is like a flushing of the whole face, neck ring, inside my forearms. It gets worse when I move around. Better when I rest. Sometimes nothing helps. It goes away for a week for no reason then starts again. I also have itching where I am red. Also itching palms, feet, armpits, upper back, groin.

Doctors have been telling me it is histamine production and are concerned I will go into anaphalaxis only because I have a history of it from medicatons like Codiene, Penicillin, Ultram. I tried all the anti-histamines with no relief and they made my muscle spasms spread to my diaphram and I could not breath (I do not have Asthma). I stopped them and thankfully that is over. I have done many food elimination diets to try to pin point the problem. All have failed. Nothing seems to be a common factor in the trigger not even stress. I am now eliminating Ibuprophen which is the last OTC pain med I am not allergic to.

The red and itching started when I went gluten-free. I have since stopped eating gluten-free products which all have soy and am eating fresh fruit, veggies, fish, rice. Thats it.

I see a dermatologist in July to see if maybe its a form of eczema.

Does anyone else have a story to tell that could point me in a direction I haven't taken?
I had skin and food allergy tests done already without any help to find the cause.
I saw a neurologist and had a head MRI normal.

I realize each person's recovery is as unique as they are as individuals but am hoping someone here may have a brainstorm for me.

Aloha
Hula Girl


I, too, had horrendous itching and rash after going gluten-free. Some same places, some different. I think it was a good move for you to dump the soy because that was what was causing mine--they take the gluten out of processed foods and dump in a bunch of soy! It took a long while for that rash and itching to subside. (I am 7 mos. gluten-free.) I have only managed to halve my CRP, which was practically off the charts. Of course, I do have psoriatic arthritis also and some of it comes from that. Way too much inflammation! Also just got glutened again--see another post. Tis a long and winding road to recovery. I still have itchy skin. Afraid I can't help with the pain. Keep looking, and hang in there!

Maybe others here will have more to offer. I am glad you found this place. Hope you feel better soon.

Neroli
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#3 lizard00

 
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Posted 17 June 2008 - 04:02 AM

Check out this thread.

http://www.glutenfre...s...c=36163&hl=

Sounds like you are dealing with something other than or in addition to Celiac.
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Be yourself, everyone else is taken.
Oscar Wilde

Gluten free November 2007
IgA Deficient, Neg Bloodwork, Double DQ2 Positive
Dietary and Genetic Diagnosis June 2, 2008
Soy free Jan 09

#4 RiceGuy

 
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Posted 17 June 2008 - 04:31 AM

My first thought is to suggest magnesium and a sublingual methylcobalamin (B12). Have you tried these? Another might be zinc. Also, some of the symptoms you describe (itching in particular) sound like candida, so I'd suggest caprylic acid for that. And of course, those omega-3 fatty acids might help too.
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#5 HulaGirl

 
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Posted 17 June 2008 - 07:11 AM

I, too, had horrendous itching and rash after going gluten-free. Some same places, some different. I think it was a good move for you to dump the soy because that was what was causing mine--they take the gluten out of processed foods and dump in a bunch of soy! It took a long while for that rash and itching to subside. (I am 7 mos. gluten-free.) I have only managed to halve my CRP, which was practically off the charts. Of course, I do have psoriatic arthritis also and some of it comes from that. Way too much inflammation! Also just got glutened again--see another post. Tis a long and winding road to recovery. I still have itchy skin. Afraid I can't help with the pain. Keep looking, and hang in there!

Maybe others here will have more to offer. I am glad you found this place. Hope you feel better soon.

Neroli


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#6 HulaGirl

 
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Posted 17 June 2008 - 07:31 AM

Thanks so much mushroom, riceguy and lizard00.

Rice Guy, I will try these supplements (can't hurt) Had my blood tested for all my esential vitamins and it was all normal but I am sure I need more than normal while healling.

Lizard00, thanks for the thread. I have been tested many times for Lyme going all the way back to the 80's when I was hiking a lot on the East Coast where it is prevelant. All tests were negative but I saw on the tv show Mystery Diagnosis that labs have a high rate of false negative and it can settle into only one organ and not be seen in the blood. It has been so long I have been sick I figured I would have become paralyzed or died by now but don't know if it is possible to keep fighting it back for years and years. I will check with my docs again.

Mushroom, I will stay off the soy...thanks for sharing your symptoms. My CRP was only 5 but for someone without arthritis or any other conditions it was too high. My doctors completely ignored it and thought I was crazy for asking for the test 2 years ago after seeing an article about it in a magazine. But my father passed away from a massive heart attack at 62 and I realized that my CRP made me a higher candidate for heart disease. This was before I had the Celiac Diagnosis. The itching and muscle spasms seem to only be helped by Clonazepam or Atarax which are anti anxiety but my doctors say they have muscle and neurological relaxation effects. I take very small doses only when I need to go to bed or my muscles are spasming so bad I know they will trigger a migraine. I hate taking meds. When I have time I will post my whole story with everyone elses. Here in Hawaii we say Mahalo Aloha oe' ( thank you and goodbye until we meet again).

Hula Girl
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