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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Need help/advice with symptoms

Snowdrop

Rebel without a biscuit
Messages
2,933
Tried going gluten free for just over a week, the fatigue is getting worse (I can now barely do anything). My mind has cleared slightly, but my body is experiencing bone-crushing fatigue, even with much more sleep than normal. (Am I so tired now that the pain is simply harder to endure?)

Has anyone else experienced changes like this, or have ideas to help?
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
Tried going gluten free for just over a week, the fatigue is getting worse (I can now barely do anything). My mind has cleared slightly, but my body is experiencing bone-crushing fatigue, even with much more sleep than normal. (Am I so tired now that the pain is simply harder to endure?)

Has anyone else experienced changes like this, or have ideas to help?


You've probably posted elsewhere more about your general condition, testing, symptoms, diagnoses etc. Maybe you could edit this post and add some of that information.

There isn't really enough information in this post to help people comment thoughtfully, and I'm sure people would like to offer helpful ideas.

Wish you the best!
Sushi
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
could be gluten withdrawal. It's common with autistic
children so specialist recommend going slow.

could be a food you're eating more of now too.

since your head has cleared a bit, mine did too within
the first 24 hours, that's a good sign.

I'd try Epsom salt baths or take magnesium for pain.

Fwiw a lot of people wind up on the paleo diet because
it eliminates all common food intolerances. Dr wahls
and Dr myhill explain this.

tc ... x
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Sorry, You're right. I have gradual onset ME. I meet all the criteria (Canadian consensus I think).
I guess I'll try to fill in some details as I haven't posted this elsewhere.

I have been ill all my life although not initially with ME. First epilepsy from toddlerhood. I was medicated for that until I stopped medication as a teenager (I simply couldn't be bothered with three times a day and it made me somewhat of a zombie.

Also as a result I have always had trouble organising my thoughts I rely a lot on external help). I've also had since childhood tinnitus. As a teenager I experienced hormonal trouble. Killer PMS, headaches that overtime became more aggressive migraine and accompanying vomitting.

Then came other difficulties, Reynaud's, swollen lymph nodes, at some point I realised I had had a sore throat for a long time. I've been sensitive to bright light, smells. (these all have been going on for at least twenty years) At some point after that I developed insomnia.

I think I naturally worked within a certain energy envelope and after I married I stayed home, I have two children now grown by raising them challenged me energetically and about 7 years ago I crashed onto the couch~extreme pain, fatigue (that I later discovered would definitely worsen with exertion)...,

cognitive breakdown, aching sore throat, more trouble sleeping, and from reading here I realise that I also have POTS and have fainted several times over the past few years often after taking a shower. I have also experienced anxiety attacks sometimes panic that wakes me up at night.

I may have missed a few things but that's the gist. The difficulty is that I'm asking for help but I have nothing to offer with regards to tests.
Since I've had a long history with Dr's I've mostly avoided them.

Occasionally going for help for this or that symptom
and getting no relieve I tried simply to carry on and coped as best I could. The only test I ever remember taking was a cortisol test with a naturopath. I don't have those results for several years ago but she gave me liquorice tincture.

I have no money to spend on tests presently. My husband also has health issues and has been early retired. I can't even buy the vitamin supplements I've used in the past.

I've tried a variety of supplements, the only ones I've done with any sort of organisation were the methylation ones suggested by Rich vanK. I gave those up as I felt worse. I would have tried again at lower dose but cannot afford to at the moment.

I have achieved some mental clarity just by taking vitamin D in larger doses (it's not expensive) and drinking water has helped the POTS a little.
I thought, given that there is so little I can do that gluten free might help.

My formal ME diagnosis came when we moved back to Toronto from Vancouver (three years ago). I went to my new Dr. simply to establish that I had one and he agree that I had ME. But he doesn't really know what to do about it.

He immediately gave me codeine for the pain and lorazapam for sleeping/relaxant. I was hoping after the gluten free that I would feel good enough to make the trip downtown and enquire about Low Dose Naltrexone next.

My apologies for such a long post, but then it's been a long road down the rabbit hole. My thanks in advance if you got this far.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
could be gluten withdrawal. It's common with autistic
children so specialist recommend going slow.

could be a food you're eating more of now too.

since your head has cleared a bit, mine did too within
the first 24 hours, that's a good sign.

I'd try Epsom salt baths or take magnesium for pain.

Fwiw a lot of people wind up on the paleo diet because
it eliminates all common food intolerances. Dr wahls
and Dr myhill explain this.

tc ... x
Yes, I'm glad for the clearer head at least. I'll stick with it for a bit longer although I'm starting to want to just munch a cracker to see if I can relieve this new level of blah. I do have tramadol for pain but I don't use it routinely I'm always afraid it will stop working but I've been relying on it more of late. If I can get it together I just might try the epsom salts.
I'm thinking I may as well give up cheese ~ I've given up the pasta and pizza crust it goes on : )
Thanks for your response.
 

aimossy

Senior Member
Messages
1,106
I went through a period of adjustment feeling worse after stopping gluten so I decided to do it slowly it was like I was addicted. was worth it eventually for me.:)
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I went through a period of adjustment feeling worse after stopping gluten so I decided to do it slowly it was like I was addicted. was worth it eventually for me.:)
Do you mean that you went back to eating gluten but less and less over time? Are you gluten free now? And what kind of difference did it make? If you don't mind my asking.
 

aimossy

Senior Member
Messages
1,106
yes it was massive withdrawl went I went cold turkey. so I cut back slowly and it that way I didn't get quite so overwhelmed with the pressure of change and figuring out substitutes. Gluten is in lots of foods so I found it easier to get my head around going slowly with it as well.
I am pretty much gluten free for almost two years but some sneaks in with things.
I found it reduced my fog and physical heaviness and decreased some bloating.general bowel discomfort I was tolerating better and I had lessening of some achyness. less constipation discomfort.
I have a very bad gut still though and really notice if I do have gluten.
and I have tried FODMAPS and no caffeine and all sorts. finding a balance for me is really hard.
but people are different and I have heard of people doing heaps better off gluten all over the show.
Its a definitely worth a go.:)
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Tried going gluten free for just over a week, the fatigue is getting worse (I can now barely do anything). My mind has cleared slightly, but my body is experiencing bone-crushing fatigue, even with much more sleep than normal. (Am I so tired now that the pain is simply harder to endure?)

Has anyone else experienced changes like this, or have ideas to help?

if you have IBS you may find a low FODMAPS diet helps more thatn just gluten free - it allows some gluten
google Sue Shepherd for the accurate info - it i really helpful for most of us.

you may want ot get tested for coeliac to rule that out - if you ar not coeliac thatn low FODMAPS will help more than gluten -free

also are you on a high salt diet? that helps too - or add electrolyte drinks or coconut water may help

good luck

ally
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
good info from Allyson there snow drop FODMAPS works for lots and all that other stuff she said.im too sluggish now.lol


cheers aimossy - the other thing to do is a lactose challenge as if you are lactose intolerant that has a big impact too and you can avoid lactose or take lactase enzymes with it to counteract it.

the other thing you might do is check out if you have POTs/OI - as often it is being upright that is making you ill or tired - not the gluten - but you do not make the connection between being upright unless you look for it

A
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Fwiw a lot of people wind up on the paleo diet because
it eliminates all common food intolerances. Dr wahls
and Dr myhill explain this.

tc ... x

yes i agree xchoc, paleo diet is good for us - it is low GI for the most part and high protein and interestingly very similar to low fodmaps in that it excludes a lot of high fructose foods as protein is no GI and wo Fodmaps

cheers

Ally
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
A little gluten still causes me to get high antibodies
on my stool test so it's out for me. Imho, it's best to just
avoid it completely. There's a ton of info on the web
now about how it affects our bodies. Those of us with
chronic illnesses are by far the most affected from what
I've seen. People with ms, lyme, anxiety, autism, etc
are seeing improvements by avoiding gluten, dairy,
corn, soy, chemicals, etc.

There are gf certified foods that are safer than those
that aren't certified. Or at least that's the goal.

tc ... x
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
yes i agree xchoc, paleo diet is good for us - it is low GI for the most part and high protein and interestingly very similar to low fodmaps in that it excludes a lot of high fructose foods as protein is no GI and wo Fodmaps

cheers

Ally

paleo is just organic meats, fruits and veggies. Not
high protein or low gi. Dr cordain has good info on this.

basically it's just what a caveman could've eaten. He could've
eaten fruit all day if he hadn't killed an animal.

Those of us with glucose problems can't function
on high fruit diet but some can.

tc ... x
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Hi all
Thank you all for the replies. I haven't read everything at the moment~hopefully tomorrow. I appreciate the input.
I may consider other food challenges down the road but would first like to get a grip on the gluten-free for a few more weeks to see how that goes. I didn't really anticipate such a reaction as I had. The anxiety is at least subsiding.
SD
 

Snowdrop

Rebel without a biscuit
Messages
2,933
if you have IBS you may find a low FODMAPS diet helps more thatn just gluten free - it allows some gluten
google Sue Shepherd for the accurate info - it i really helpful for most of us.

you may want ot get tested for coeliac to rule that out - if you ar not coeliac thatn low FODMAPS will help more than gluten -free

also are you on a high salt diet? that helps too - or add electrolyte drinks or coconut water may help

good luck

ally
Hi Ally
Thanks for your info. I've had a look at the FODMAPS diet. I'll keep it in mind for me and my spouse.

Ironically, the whole story of my gluten-free odyssey is that my husband was having increasing cognitive fog. He does the groceries and cooking. I knew others with ME said they had benefitted so I joined him eating without gluten. He has all the symptoms of IBS and he's doing fine gluten free. My GI tract seemed to be the only thing that functioned well for me so it just goes to show these things are hard to pin down.

I am always finding it complicated to try and deal with this illness and the medical system. Now that I'm gluten free I'd have to go back to eating gluten to be tested. My cousin was just diagnosed coeliac though. It's a big deal for me to go to the Dr. just to get my prescriptions renewed. I don't own a car anymore to get around and I have no fight left in me to press for much from the medical estbl.

As for salt. I'm known for my excessive salt intake. This predates my awareness of POTS by years. I've just always craved salt and since my BP was always on the low side I never worried.

I've been thinking I should try and find an electrolyte powder to mix with my water intake. Sounds like a good idea.
regards
Snowdrop