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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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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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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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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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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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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Celiac disease--the inability to tolerate food containing gluten--has long ... Lactobacillus were able to detoxify the gluten and remain symptom-free. View the full article
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
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