Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

BenVenit

Severe Bone Pain- Anyone Else?

Recommended Posts

Hi-

I am new here but very glad to see this here. I was DXed late despite every symptom in the book. I had an array actually. It hit my systematically and started to show when I was only 14 but they just said I had anorexia even though I was not afraid of fat, etc..but COULD NOT EAT. I have also been labeled autistic. A lot cleared up when I went off gluten.

But that was when I was MUCH older, in 40's. By then I had irregular heartbeats, tingling in hands and feet, thrombocytopenia, total depression verging on madness, etc. I became disabled.

Now if I slip up (not by choice, I am vigilant, but by accident) I get terrible bone pain like and buring in pelivs, gut, e tc....as well as cramps etc.

Like I have right now. I can hardly sit or walk. This has happened only a few times. I am not sure where I got glutened this time. I think it was quinoa from a store that sells wheat right next in a big bin ( a bulk store).

Does anyone else get this? It hits my systematically not just in gut. I had it too long.I Know it can be asscoaited with cancer and leukemia and lymphoma and with the low platelets, they are already monitoring me.

Who wold have thought that a health food, whole wheat, would wreak this on a person??!

Thank you all for being here and sharing your stories. It makes us all feel less alone. This is scary.

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Hi-

I am new here but very glad to see this here. I was DXed late despite every symptom in the book. I had an array actually. It hit my systematically and started to show when I was only 14 but they just said I had anorexia even though I was not afraid of fat, etc..but COULD NOT EAT. I have also been labeled autistic. A lot cleared up when I went off gluten.

But that was when I was MUCH older, in 40's. By then I had irregular heartbeats, tingling in hands and feet, thrombocytopenia, total depression verging on madness, etc. I became disabled.

Now if I slip up (not by choice, I am vigilant, but by accident) I get terrible bone pain like and buring in pelivs, gut, e tc....as well as cramps etc.

Like I have right now. I can hardly sit or walk. This has happened only a few times. I am not sure where I got glutened this time. I think it was quinoa from a store that sells wheat right next in a big bin ( a bulk store).

Does anyone else get this? It hits my systematically not just in gut. I had it too long.I Know it can be asscoaited with cancer and leukemia and lymphoma and with the low platelets, they are already monitoring me.

Who wold have thought that a health food, whole wheat, would wreak this on a person??!

Thank you all for being here and sharing your stories. It makes us all feel less alone. This is scary.

I was also diagnosed a few months ago at 48. Last summer I distinctly remember pain in my right hip. I knew something was wrong. a year later I was experiencing pain in my spine and ribs as well. my lumbar area was a mess. after dx I had a bone density test and was dx'd with osteopenia.

question to you then is: have you had a bone density test?

hang in there. we are all here to support you with encouragement and confirmation of your symptoms...

Share this post


Link to post
Share on other sites

Your not alone with the bone pain. I had been told by so many doctors that I 'just needed to learn to live with it' prediagnosis that I had given up hope of ever being pain free again. One of the best things for me about finally being diagnosed was having that crippling pain go away. When I get glutened it returns. For me the most helpful thing is taking asprin. It works as an anti-inflammatory and since gluten causes inflammation I think that is why it helps even more than any pain pills I was given. Now that I have been gluten-free for so many years the pain isn't as severe and seems to go away much faster than it did at first.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

Share this post


Link to post
Share on other sites

i'm 3/4 of a year being gluten free for the most part except for accidents and a challenge but the bone/joint pain for me is magnified a great deal if i eat gluten. its awful and scary to feel that poorly. hope you feel better soon. :)

Share this post


Link to post
Share on other sites

I feel aches in my bones, mainly my feet, after being glutened. I have gotten glutened from gluten-free foods from bins. The risks include gluten getting in the bin from other sources, who knows what was in the bin before the gluten-free foods were, and also the binned food may have been prepared in a facility that also processes wheat or related nasty grains. The bone ache goes away in a few days, but repeated glutening can prolong the ache and other symptoms. Trace amounts of gluten are in so many foods and as so many processed ingredients, that one needs to be a bit of a detective to sleuth them all out. This becomes almost automatic as you get used to it and other gluten-free changes.

Share this post


Link to post
Share on other sites

I remember having severe bone pains when I was a child but only occasionally as an adult. And I have had a lot of pain over the years from rigid and cramping muscles. I learned to adjust my diet to eat a balance of foods which leave my body slightly alkaline and I tend to become acid very easily. The taste of a food is not an indication of whether it will leave a person more alkaline or acid because it is the digestion of the food which determines the effect. An easy way to determine if a person is too acid is using a pH paper on saliva first thing in the morning before eating or brushing teeth. Acid forming foods include complex carbohydrates such as gluten, all grains, meat and fish. Most vegetables and fruits are alkaline forming. Baking soda alkalinizes the body and I often take a small amount in water before going to bed or when I begin to feel rigid or cramping muscles.


DQ6/DQ8

HLA-DQ B allele 1 *0602: HLA-DQ B allele 2 *0302

Gluten free and Cow Dairy free since 2006

Share this post


Link to post
Share on other sites