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Pain

elginX

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elginX Newbie
elginX
Posted

I have not had an official diagnosis as I am dealing with other more pressing health issues and I'm in between doctors but I have been very ill for a long time.

I was diagnosed with addison's disease (autoimmune disorder) and fibromyalgia 1 1/2 yrs ago. I thought I would get better once I began treatment but I only regained some of my strength.

A few months ago my roomante brought home some extra chewy fresh bakery bagels and I ate 2 of them. About 30 min later I had the chills, my stomach was roiling and I was in bed for 2 days. I had these "episodes" on occasion and attributed them to addison's disease, always blaming stress. Well someone mentioned gluten intolerance so I decided to try abstaining from it. No episodes. 2 weeks later I ate some licorice and the same thing happened. In bed for a day and feeling like I was dying. The second time I accidentally ate Pringles. So after the the second episode I figured I had a gluten sensitivity and became really conscious of what I was eating. I don't think I have ingested any gluten for nearly 3 months. I am a thousand times better. My family and friends notice a huge improvement in my energy levels. I have no more "episodes" but I am still in a great deal of pain. I am on serious pain medication and I want off of it.

The pain (what caused the fibro diagnosis) is an all over ache like a terrible flu. I also have random stabbing pains all over my body.

I am going to a new dr. I found a doctor that is an internist with a specialty in allergy and immunology. The good is that maybe he can help give me a real diagnosis, the bad is that he may take me off some of my meds which will be disastrous for me.

Is anyone else experiencing this level of pain with celiac or gluten intolerance? Is there any hope of relief?

Anything I should ask my doctor with regards to gluten intolerance testing?

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tarnalberry Community Regular
tarnalberry
Posted

I have fibromyalgia as well, dx'ed AFTER being gluten free (and dairy free) for a number of years. Some people have found that going gluten free makes a huge difference (but it may take far longer than three months). I have not found that to be the case for me. So, it is possible that you:

1) haven't been gluten-free long enough to know if it will make a significant change in your fibro symptoms

2) have fibromyalgia independently of any food intolerance

3) have the symptoms caused by another food intolerance

4) have the symptoms caused by a vitamin/mineral deficiency from celiac malabsorption

5) have the symptoms from a secondary condition caused by the malabsorption

(In my case, my symptoms are made SEVERELY worse by a mild case of restless leg that severely impacts my quality of sleep, even when I don't really notice the RLS at all. My RLS is made worse by low iron stores - not so low as to cause a red flag, but on the very low end of normal.)

There's a lot to investigate (for your own body) and it'll take time. Hopefully this new doc can help.

YoloGx Rookie
YoloGx
Posted

Hi Elginx,

Did you see this article here on celiac.com?

https://www.celiac.com/articles/21499/1/Con...ease/Page1.html

My friend G had what I am convinced was the beginning's of Addison's. Years ago he had a mottled brown discoloration on his lower calves and on his ankles. He has had intestinal distress for years. For quite some time he couldn't stand to have a blanket rest on him. He has trouble sleeping and is often tired all the time. Exercise has helped (when I could get him to do it!) but it only went so far. His docs were not helpful about this issue however.

G's adrenals are often exhausted which then also stresses out his thyroid. He now takes thyroid medicine. Diet and herbs plus exercise however have helped immensely--so his adrenals are improving.

Through a long period of trial and error we discovered its very likely he has celiac, as do I. Both of us have a tendency to ache all over if we have even a trace amount of gluten or cross contamination (CC) from it. Meanwhile both of us have low blood pressure--not that uncommon for someone who has celiac for some reason.

My feet and hands were always cold and used to ache chronically. For years I was unable to sweat. Gradually that has improved as I uncovered and treated my health problems. Plus its seemed I was incapable of fully recovering from a car accident at the end of 2000 wherein I got a whiplash and it messed up my elbows. Apparently unknowingly I had celiac all my life which was complicating everything.

Herbs meanwhile saved me. Otherwise I would have lost my kidneys as a young adult. As it was I only lost 1/2 my right kidney due to spontaneous inflammation... The herbs plus diet saved me--through trial and error I figured out I should avoid the wheat family years ago. I was not able to tolerate taking antibiotics forever like the docs wanted me to. They made my ears ring and my skin inflame. Meanwhile too I discovered fairly recently my wheat family allergies were actually celiac. Going off all trace gluten made a revolutionary improvement for me as it seems to be doing for you. Suddenly I no longer had the mental confusion, anxiety or severe achiness all over that I always had since I was five or six, after my folks put me back on grains...

I have found that besides going off all gluten, its also been helpful for both G and me to go off all grains. Am now on the specific carbohydrate diet (there is a thread here on celiac.com with that name started by AliB). I started with the paleo diet but find with the scd I have a better/broader diet. You might want to check out these options if just going off all trace gluten doesn't help sufficiently.

I also recommend taking detox herbs like dandelion root and yellow dock as well as lymphatic cleansing herbs like echinacea or cleavers. Avoid tinctures due to the gluten. Start one at a time and start slow to see if they agree with you. Take say a maximum of three days in a row, then go off for another three before repeating. You of course will have to decide if its wise for you or not. However they have helped both me and G immensely. We both especially need them if we eat any sugary things or start to get muscle/joint etc. aches. and/or get CC'd by gluten or just are under a lot of stress. Could this in part have something to do with overstimulated exhausted adrenals??

Exercise continues to be key for both of us. I have discovered I take in tension into my muscle tissues and joints as well as the coverings of the muscles--which then creates painful knots. Exercise releases it and then I feel fine. Rolling around on a cat toy tennis ball also helps break up the knots.

With the celiac scd diet, I have a lot less dysbiosis than I did. I have had a bulging abdomen since I was 5 or 6--and seemingly had candida overgrowth forever too. All systems now are finally starting to really function well (here at age 60--oh well, bretter late than never!!). The dysbiosis is going away. But again without the exercise, that can reverse pretty quickly, not to mention how bad it is if I ever get CC'd from gluten!

I also take nattokinase with NOW plant enzymes on an empty stomach to help remove excess fibrin. It seems to help with getting rid of the old scar tissue as well as getting rid of inflammation. Also clears fibrin from the arteries for those that want to know. Don't take it if you are a bleeder however...

Plus co-enzyme B complex helps me have less nerve pain....I was unable to metabolize regular B vitamins. Its possible that now that I am making and eating 24 hour yogurt (and soon fermented cabbage!) that my need for co-enzyme B vitamin supplements will diminish. But for now good is good. I take the ones from country life since I don't do well with sorbitol which seems to be in all the sublingual tablets I have seen.

Well ElvinX, hope some of this helps!

Bea

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