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[shericeliac2010]

Hi All,

I've been gluten-free since Feb.13 of this year. I've 'had' a variety of illnesses until then, everything from IBS(irritable bowel syndrome), OBS(overactive bladder syndrome),CFS(chronic fatigue syndrome),acid reflux (to the point of very little enamel being left on most of my front teeth, headaches(severe)for over 30 yrs., fibromyalgia(most painful), swollen ankles. Nothing except being gluten-free has taken all of this away..with the exception of CFS and headaches. The headaches I am hoping will subside overtime being gluten-free and most days I can handle them as I've grow accustomed to them-mind you I do take up to 6-9 excedrin's a day. Up until almost two weeks ago, I was pretty much symptom free of anything except the headaches-I lay here typing with fairly severe chronic fatigue. I wake as was in the past yawning, sluggish, usually within 5 mins. of waking I'm finding myself back in bed. Not able to get myself out of the door for work. I just remembered something, I do have shoulder aching., something I had from time to time with the fibro.(more severe then though), most days I have it now.. down in the joints. Anyway, I could ramble on forever as I am sure most of us could, ...I am looking for anyone with similar stories, mostly successful ones I would like as my husband has noted I am irritable now as before I guess I was not? lol..dont know. I do know I am having a hard time staying positive, before going gluten-free I could see the 'light' so to speak but now........idk, maybe I'm expecting too much too soon out of my body. I am having to nap throughout the day in order to function as well as 'push' myself into doing most things on most days-something that had stopped completly until 2 weeks back. Also, I cannot seem to fall asleep until 2-3ish most nights despite laying head on pillows, eyes fluttering in want of sleep and seemingly feeling head-exhaustion. IF I try to push through the day and not nap I am absolutely NO good for doing anything, I must nap in order to function!... !HELP! I am aware it can take a yr. to 2 for healing and that gluten-free IS for life!

PS...side-note, my mother has gone gluten-free as well and swelling (severe fluid retention) she had in her ankles has completely subsided. She says she has energy she has not had in decades, she is 67. As a newborn she was sensitive to everything except 'soy'...she almost died as an infant as a result of these sensitivities.

PSS..TY honey for insisting I 'blog-in'!! *kiss*

[shericeliac2010]

I need to add somethings to previous post. I have also been having some on and off again symptoms of IBS these last few weeks as well. I'm thinking maybe I should do the basics of meat, veggies and fruits only and learn to live with that. I do take probiotics, a multi-vitamin mineral and calcium+magnesium supplements (all gluten-free). I also had many more aliments than previously stated such as tingling/numbness in extremities, slight vertigo, memory issues, the infamous 'fibro-fog',shooting pains in various places throughout my body including my face and ears. My ankles had been swollen the better part of two years prior to going gluten-free. No one, including this wonderful treasure trove of info. called the internet ever linked it to Celiac's until now. Right before discovering what it REALLY was that was wrong with me, I was to the point of being nauseated/nauseous for three or more weeks then I began vomiting each time I ate. This led to more tears and more praying out to God. Also, I'd like to add, never have had issues with depression, etc., which some thought I did due to my CFS, however, these last few weeks I've been very weepy and I do not know why, not normal for me!! But then again it seems I'm going through a growing process in all of this with my Spirituality... being very aware of how judgmental I can be, where before I thought(mistakenly) I was not. Being very aware of how irritable I've been these last few weeks, not feeling guilty but getting weepy over it as it is not normal for me to be like this on a regualar basis and not knowing what to do about it!

I came across a song another user posted called "Courage Is"...it is a most beautiful song, moved me to tears as it reverberated things I've had in my mind for many years and tried to live by-I've lost my way somewhat, I think, as a result of my my body being so very sickly, my mental attitude has changed or had, but hearing this song and looking up the lyrics has helped me to put some things back into perspective today, ty Kurzemiete.

Here are the lyrics:

Take all my vicious words

And turn them into something good

Take all my preconceptions

And let the truth be understood

Take all my prized possessions

Leave only what I need

Take all my pieces of doubt

And let me be what's underneath

Courage is when you're afraid,

But you keep on moving anyway

Courage is when you're in pain,

But you keep on living anyway

We all have excuses why

Living in fear something in us dies

Like a bird with broken wings

It's not how high he flies,

But the song he sings

Courage is when you're afraid,

But you keep on moving anyway

Courage is when you're in pain,

But you keep on living anyway

You keep on living anyway

It's not how many times you've been knocked down

It's how many times you get back up

Courage is when you've lost your way,

But you find your strength anyway

Courage is when you're afraid

Courage is when it all seems grey

Courage is when you make a change,

And you keep on living anyway

You keep on moving anyway

You keep on giving anyway

You keep on loving anyway.

PS..Forgive me my husband for you have been the recipient of some of what I've written today.

The words in this song that I've put in bold are for you Keith.

[keithceliac2010]

Hang in their Sheri. I feel your pain. Had it for decades. Even though we can't be together everyday and everynite, you are still in my heart. It does not seem fair that you diagnosed me, and after 4 weeks my body and mind have been transformed and my symptoms have disappeared. On the other hand, it seems we have switch bodies(and minds). Now it seems that I have your health and positive outlook and energy, and you've got all my old symptoms. Well you dealt with my negative symptoms of celiac for 8 years and did not give up on me, so now its my turn to support you as we try to tweak your diet and find you some relief. If anyone who reads sheri's post above, and has any insight into why she felt so much better during the first 2-3 weeks of going gluten free but then took a turn for the worse and her symptoms have come back even though she remains gluten free, please let us hear from you people who have more experience with celiac. I cannot offer any advice since her and I are both newbies. It's like the blind, leading the blind. Please let us hear some suggestions or similar stories, and let us have some hope that she will come through to the other side again, and her symptoms will reside. Thank you all for your support of Sheri and I, in this new and foreign land we have been placed in.

[mushroom]

Hi Sheri. I am sorry you have reverted to having problems again. Actually, it is not that uncommon to at first feel on top of the world and then relapse. Part of the reason is gluten withdrawal, which can really make you feel like cr*p. This usually only lasts a few weeks, just like nicotine. The other part of the equation is that it happens often that people discover additional intolerances - things that were masked by the gluten response but once the gluten is withdrawn make their presence felt. No.l is lactose intolerance because the part of the gut that digests lactose is killed by the gluten until it heals itself. No.2 is soy for most celiacs; apparently the protein structure is similar to gluten, and most gluten free substitute foods contain lots of soy; No.3 is corn (see reason #2).

So don't give up yet - you are only six weeks in and just this side of regaining your health. Try dropping these three items from your diet (along with most processed foods) and eat only things which don't need a label or a package (I would make an exception for rice and gluten free pasta); i.e., meat, fish, veggies, fruit, rice, pasta, nuts, seeds, olive oil. You can use Earth Balance soy-free spread, hemp or almond milk, coconut milk and ice cream (for treats). Do that for a couple of weeks and see if it doesn't make you feel better. Then add in other things one at a time, discarding anything that triggers a a reaction, and find your personal culprits.

[shericeliac2010]

Hi Sheri. I am sorry you have reverted to having problems again. Actually, it is not that uncommon to at first feel on top of the world and then relapse. Part of the reason is gluten withdrawal, which can really make you feel like cr*p. This usually only lasts a few weeks, just like nicotine. The other part of the equation is that it happens often that people discover additional intolerances - things that were masked by the gluten response but once the gluten is withdrawn make their presence felt. No.l is lactose intolerance because the part of the gut that digests lactose is killed by the gluten until it heals itself. No.2 is soy for most celiacs; apparently the protein structure is similar to gluten, and most gluten free substitute foods contain lots of soy; No.3 is corn (see reason #2).

So don't give up yet - you are only six weeks in and just this side of regaining your health. Try dropping these three items from your diet (along with most processed foods) and eat only things which don't need a label or a package (I would make an exception for rice and gluten free pasta); i.e., meat, fish, veggies, fruit, rice, pasta, nuts, seeds, olive oil. You can use Earth Balance soy-free spread, hemp or almond milk, coconut milk and ice cream (for treats). Do that for a couple of weeks and see if it doesn't make you feel better. Then add in other things one at a time, discarding anything that triggers a a reaction, and find your personal culprits.

Thank you mushroom.

[txplowgirl]

Hey Sheri and Keith, Welcome to the forums!

I know exactly where you're coming from girl and I empathize with you.

I have Fibro and CFS, It can be a challange but you need to hang in there.

Like Mushroom says it sounds alot like gluten withdrawal and more food intolerences. Not only does the gluten affect me but so does the soy and dairy. Both of those give me depression and fatigue. I know that weepy feeling believe me. We fibro sufferers know that pain and fatigue all too well. Go straight whole foods nothing gluten free processed for about 6 months to see if you feel any better. Also, the nightshade vegetables, ie tomatoes, potatoes, all bell peppers and eggplant. These cause swelling and pain in our joints and muscles. My pain level has come down from a 9 to a 4 most days but my fatigue level has only come down from a 9 to a 7 but that might be because I push myself too much everyday with my job. I'm a truck driver. Bills still gotta be paid. I have to cook in my truck, don't eat out if I can help it.

But I am no where near as bad as I was 2 years ago. If I get a bit of gluten, dairy or soy. Well the next couple of days my significant other calls me the snarly witch bi^^h.

This is for Keith, you are a great man to go gluten free with sheri and to find out you both have problems to me is the ideal situation because you both can help each other. Awesome!

Now, couple of questions. Did you 2 replace your cookware, toaster, collander, any wooden utensils or cutting boards? You could still be getting cross contamination from that. If you have children would be a good idea to take the household gluten free because of cross contamination also. Pets too. Same thing there.

Oh also before I forget. Another thing that causes fatigue and pain for us fibromites is aspertame. Bad stuff for us.

Also have you had your blood checked to see where you are at with your vitamins and your thyroid? That could be a reason for fatigue.

6 weeks in is just taking a little baby step. You have years worth of healing to catch up on. It's not gonna go away real quick. I was 3 months in before I really started feeling better and i've had all this since I was 8. I have heard that for some of us it can take up to 6 or 7 years before we totally heal. If I keep healing like I am I will be where I want to be in another 3 years. It just takes time and patience. Believe me in this line of work that i'm in you come to learn that real quick. Hurry up and wait. Anyway, enough of that.

Sheri, feel free to pm me any time with questions. I'll be glad to help you out.

txplowgirl