fatigue and muscle soreness--long after eating gluten free

[Guest guest]

Hello there,

I am a 37-year-old woman, diagnosed very definitively with CD last year. I have

been

eating gluten free this whole time but have had several ongoing problems.

For the past month or so, I have been feeling overall much more functional but

then in the

past few days I have been very weak, particularly sore and weak in my limbs.

Even walking

upstairs is difficult, which is very scary. I have had these episodes in the

past, too. They

seem to come on after I have used my muscles a bit, but not to any great degree

that

would explain the fatigue. I have seen a neurologist and a rheumatologist and an

endocrinologist and have been cleared of related diseases.

So my questions are --

--Do any other celiacs experience this? Or did they, and it has gone away (I

hope)?

--My Vitamin D level is borderline/low, and I've just started taking a

supplement - could

that be the problem?

--Do you think these episodes could be related to an accidental exposure to a

bit of

gluten (I am very strict, but maybe it's happened)?

--Also, my brother, who doesn't have celiac disease, at least according to the

tests, was

diagnosed with fibromyalgia years ago and has been suffering terribly with it --

could this

be related? God, I hope I'm not developing something like that.

I'd appreciate any thoughts/advice you'd have.

best,

[Guest guest]

Let me second that. My iron intake was prescribed and

carefully monitored by my doctor, and I stopped as

soon as supplements were no longer necessary.

--- flatcat9@... wrote:

> Yes, anemia often is an indicator of CD. However,

> please, please don't

> start taking iron pills without talking with a

> knowledgeable doctor. There are

> many kinds of anemia, with many causes, and iron

> pills aren't always the

> appropriate solution. They can cause considerable

> damage, in some situations.

> H.

>

> In a message dated 6/3/06 9:39:59 AM,

> swoodsf@... writes:

>

>

> > Have you been tested for anemia? I'm a 54 year

> old

> > woman, and being diagnosed with anemia was my

> first

> > step toward being diagnosed with CD about a year

> and a

> > half ago. I still get occasional leg cramps at

> night

> > but iron pills really got rid of my tiredness.

> >

> > best,

> >

> > Sharon

> >

>

>

[Guest guest]

Hi ,

Here are some possibilities you might consider. I have noticed that many newly diagnosed celiacs have a "relapse" period during the first year or two. I haven't seen any research on this, it is just something I have observed in my 10+ years as a celiac support group leader. What I have seen is that for the first several months a newly diagnosed celiac feels better. Then they start having symptoms again. This can go on for up to three years after diagnosis, but most seem to feel better after the two-year mark. My best guess is that there is some detox going on as your body gets rid of the gluten antibodies. Another factor is the possibility of increased sensitivity to gluten (once your immune system has recovered a bit, it is now ready to take on the slightest bit of gluten with renewed vigor). Since it sounds like this came on very suddenly, if you have added any new foods in the last month, consider the possibility that gluten has somehow slipped in (reading the label is not enough to determine if a food contains gluten: check a GF product list or call the manufacturer). Accidental exposure is always a possibility. Consider everything you are eating or using, from bacon to shampoo. Make sure to check the vitamin D supplement you are taking for gluten.

Some suggestions: keep notes of what happened and when, as well as what you are eating, so that if it happens again, you can compare notes. Also, it could be a different food allergy that you are not aware of (canola oil causes problems for many celiacs; soy, dairy, and corn are also common allergens). Consider having an absorption test (this will tell you if you are getting gluten) or even getting another biopsy if you haven't had a follow-up biopsy since your diagnosis (a good idea if the weakness continues or gets worse). Testing for the fibromyalgia would be a good idea, to rule it out so you don't worry about it if for no other reason. Note that this is not medical advice and I am not a medical professional; these are just some suggestions to talk over with your doctor.

Hope this helps,

Pam Newbury Santa Cruz Celiac Support Group 831-423-6904 pknewbury@...

-----Original Message-----From: [mailto: ]On Behalf Of redchicknSent: Saturday, June 03, 2006 7:56 AM Subject: [ ] fatigue and muscle soreness--long after eating gluten freeHello there, I am a 37-year-old woman, diagnosed very definitively with CD last year. I have been eating gluten free this whole time but have had several ongoing problems.For the past month or so, I have been feeling overall much more functional but then in the past few days I have been very weak, particularly sore and weak in my limbs. Even walking upstairs is difficult, which is very scary. I have had these episodes in the past, too. They seem to come on after I have used my muscles a bit, but not to any great degree that would explain the fatigue. I have seen a neurologist and a rheumatologist and an endocrinologist and have been cleared of related diseases. So my questions are ----Do any other celiacs experience this? Or did they, and it has gone away (I hope)? --My Vitamin D level is borderline/low, and I've just started taking a supplement - could that be the problem? --Do you think these episodes could be related to an accidental exposure to a bit of gluten (I am very strict, but maybe it's happened)?--Also, my brother, who doesn't have celiac disease, at least according to the tests, was diagnosed with fibromyalgia years ago and has been suffering terribly with it -- could this be related? God, I hope I'm not developing something like that. I'd appreciate any thoughts/advice you'd have. best,

[Guest guest]

Hi ,

I have Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Fibromyalgia

(FM), and was just diagnosed w/ celiac. A very large percentage of people

w/ these illnesses have celiac or are gluten intolerant. I experience

almost the exact same symptoms that you describe. I'm not saying that I

think you have these illnesses. I'm just sharing my experience in relation

to your question.

Unfortunately, many physicians don't know how to diagnose these illnesses.

I strongly recommend that you get opinions from other rheumatologists and

neurologists. If it's not CFIDS or FM, it could be something else that your

other doctors didn't catch. It took me 6 years and 22 doctors before I was

diagnosed. I can give you info about doctors who are familiar w/ CFIDS and

FM, and other bay area resources if you'd like.

Good luck,

Sharon

________________________________________________________________________

Message: 1

Date: Sat Jun 3, 2006 7:57 am (PDT)

From: " redchickn " redchickn@...

Subject: fatigue and muscle soreness--long after eating gluten free

Hello there,

I am a 37-year-old woman, diagnosed very definitively with CD last year. I

have been

eating gluten free this whole time but have had several ongoing problems.

For the past month or so, I have been feeling overall much more functional

but then in the

past few days I have been very weak, particularly sore and weak in my limbs.

Even walking

upstairs is difficult, which is very scary. I have had these episodes in the

past, too. They

seem to come on after I have used my muscles a bit, but not to any great

degree that

would explain the fatigue. I have seen a neurologist and a rheumatologist

and an

endocrinologist and have been cleared of related diseases.

So my questions are --

--Do any other celiacs experience this? Or did they, and it has gone away (I

hope)?

--My Vitamin D level is borderline/low, and I've just started taking a

supplement - could

that be the problem?

--Do you think these episodes could be related to an accidental exposure to

a bit of

gluten (I am very strict, but maybe it's happened)?

--Also, my brother, who doesn't have celiac disease, at least according to

the tests, was

diagnosed with fibromyalgia years ago and has been suffering terribly with

it -- could this

be related? God, I hope I'm not developing something like that.

I'd appreciate any thoughts/advice you'd have.

best,