Do your ME symptoms improve when you exclude wheat/gluten?

[brenda]

It was cutting cross reactive grains or rather all grains that caused my PEM to cease and if l have a busy day, l just feel a little sluggish next morning but do not have to rest all day like before, or fir a few days for that matter. And l can push myself beyond what l think l am capable of.

 

[Ysabelle-S]

Giving up gluten fixed my daily stomach problems. It may have helped other things, but I can't say for sure because I think menopause was exacerbating stuff, and that's largely over now. I can't go back on gluten because I have a problem with wheat at the very least - always gives me cystitis when I take it if I've been off it for any length of time.

 

[L'engle]

I don't eat a lot of the processed 'gluten free' products. They are expensive and generally have other ingredients that cause me problems. I eat a lot of rice and rice pasta.

 

[hellytheelephant]

@L'engle - I have the same reaction as you to highly processed foods- at least if I make it myself I know what is in it. I try to judge whether to buy on the number of ingredients- if no more than a couple then I'm fine.
I am on Day 17 of GF: I had GF pizza base, then a Genius roll yesterday- today I feel as if a steamroller has rolled over me. I woke with a slight headache and blocked sinuses, a bit of wheezing and a sugar craving( which I haven't had for days).

 

[Thinktank]

Since i quit gluten (and all grains) the bodywide inflammation has lessened and i have no more stabbing pain in my brain. I have a leaky gut and elevated zonulin so stopping gluten was an easy choice.
It was hard in the beginning because i love bread, pastries, pasta etc. The first month i had a serious withdrawal effect with increased brain fog and joint pain. I attempted to quit gluten a few times before but always failed because of the withdrawal effect.

Other things that are helping tremendously in regards of food;
Eating low FODMAP
Low salicylate
Avoiding IgG reactive foods (all grains, eggs, all dairy)
Limiting nightshades like white potatoes
No nuts / legumes, or at least the safe ones properly sprouted and soaked (low lectin)
NO processed food at all, cook everything fresh
Low-medium fat (high fat aggrevates my IBD)

 

[Hip]

Used to have gluten intolerance before I developed ME/CFS. Eating a gluten-containing meal would reliably precipitate dark gloomy depression within 1 hour (and this depression would last for around 6 to 8 hours before wearing off). Such brief episodes of depression are a classic symptom of gluten intolerance.

I had this gluten intolerance all my life. However, since developing ME/CFS, I observed that this gluten intolerance disappeared, which is interesting.

But an individual who caught the same virus as me, the coxsackievirus B4 virus that likely triggered my ME/CFS, they actually developed gluten intolerance after catching the virus (in that eating gluten causes digestive upset).

So it seems that catching a viral infection can change the status of your gluten intolerance: either triggering gluten intolerance, or eliminating an existing gluten intolerance.

Since gluten intolerance is immune system mediated, this is perhaps not surprising that a chronic viral infection like coxsackievirus B can alter gluten intolerance status.


Incidentally, according to fascinating research by Dr Alessio Fasano, the difference between gluten intolerance and Crohn's disease is that former arises when gluten activates the innate immune response (but not the adaptive immune response) in the intestinal lining. Whereas in Crohn's, both the innate and adaptive immune response are switched on by the presence of gluten, and it is the adaptive immune response that causes all the bowel damage in Crohn's. But this bowel damage does not occur in gluten intolerance.

 

[hellytheelephant]

Thank You both

I am on Day 18 and feeling some improvement in pain levels. ( Hurray!)..if this carries on I will continue for another month. @Thinktank - I was interested in your comment that you had bad brain fog during the first month. I have been hopeless all month- particularly getting my sentences muddled when I speak. Do you find it hard to find things you can eat? I am realising that it is not as simple as swapping processed bread for GF processed bread as my body does not enjoy processed foods at all.

@Hip thank you for putting the bit about the difference between intolerance and Crohn's- really helpful. I am glad you can now eat gluten. ( at last an upside to ME!!)

 

[perchance dreamer]

I rarely eat gluten anymore, and when I do indulge, my joint pain is much worse.

It really hasn't been that difficult to cut gluten. I make a delicious gluten-free bread and have just gotten used to not eating it.

I largely stay away from other grains, also, and have started using cauliflower rice (cauliflower cut to the size of rice in the processor) as a rice substitute.

 

[Thinktank]

Do you find it hard to find things you can eat? I am realising that it is not as simple as swapping processed bread for GF processed bread as my body does not enjoy processed foods at all.

Not really. There's still tons of food that i can eat.
I basicly eat dinner three times a day and never the same food more than once every 4 days.

 

[erin]

I tried gluten free diet for 3 months 2 years ago. I felt less bloated, no other improvements to notice.

 

[taniaaust1]

I've cut it nearly completely out of my diet as I have a lot of celiac disease in my family and have the gene for that. (it makes me feel sluggish and possibly give me pain in my neck) so I choose the first open saying cut it out for other reasons.

 

[taniaaust1]

ME/CFS, gluten sensitivity and the importance of excluding coeliac disease before going on a gluten free diet:

http://www.meassociation.org.uk/201...cuses-on-coeliac-disease-testing-2-july-2015/

Ohhhhh. I have lots of celiac disease in my family (severe celiacs) and do have that celiac gene but by the blood tests for celiac disease I dont the antibody to gluten.

I do get at times mouth sores, anemia issues.. problems with all of B12, folate and iron (all low..the low folate issue I related to having MTHFR mutation, the low ferritin I related to having ME) and have had abnormal liver function tests early ME (which Ive put down to having ME) and do have tooth enemal issues.

@charles shepherd what kind of tooth enemal issues exactly are related to celic disease? I've got very thin enemal to the point the dentist told me I may have to start wearing a mouth guard while sleeping. I thought I'd got the thin enemal due to drinking sports drinks due to the POTS as I'd read this can eat away the enemal.

I also though had enemal issues due to what they thought was florosis (too much floride) or my teeth being damaged due to antibotics (my tooth enamal was already damaged when my teeth came through with my front teeth all pitted and splotches). Ive had to have them capped to hide their deformaties and look.

And if you have ongoing symptoms that suggest coeliac disease, but have had a negative blood test, ask your GP to check to see if you have been tested for IgA deficiency.

I had no IgA or IgE (i cant remember now which one of those it was but it appeared to be a selective immunity deficiency)

 

[MeSci]

I cut out gluten a few years ago and experienced a lot of improvement. From my profile:

"Leaky-gut diet

I cut out gluten, and also oats and buckwheat due to a possible reaction to them, and generally reduced grains and sugar."

However, in March I experienced a downturn. I'm still gluten-free. No one knows what's wrong.

I am not good now. I've been ill for 21 years.

I get my gluten-free bread from https://uk.bfreefoods.com/ but am not sure how long I've been doing that.

 

[hellytheelephant]

Thanks @MeSci

Going GF and reducing sugar seems to be where the smart money is. I can't believe I could ever have sugar without it causing problems. - it is such a vile drug.
I am sorry to hear about the downturn. It can sometimes feel like this illness is just very good at outsmarting us....
I will try the bfree bread as I know that Asda stocks it and the sweet potato wraps look good too.

 

[MeSci]

Thanks @MeSci

Going GF and reducing sugar seems to be where the smart money is. I can't believe I could ever have sugar without it causing problems. - it is such a vile drug.
I am sorry to hear about the downturn. It can sometimes feel like this illness is just very good at outsmarting us....
I will try the bfree bread as I know that Asda stocks it and the sweet potato wraps look good too.

Trouble is, some BFree stuff has buckwheat in it. I may try going back to Schar stuff without buckwheat and maize (I think there is some) to see if that improves things. I don't seem to be able to digest maize - don't know why I keep trying it again!

 

[Thinktank]

Another improvement i just noticed is that all joint pain in my fingers and toes has vanished.
I still have a stabbing pain in my right knee when i walk but i guess that's something else.

 

[Thinktank]

The dysphagia (difficulty swallowing) is gone too!
I found another trigger that causes dysphagia and my thyroid to swell up; white potatoes.
White potatoes belong to the nightshade family which may aggrevate symptoms in autoimmune diseases.
But strangely i do not react that way to tomatoes and bell peppers.

So far since going gluten free:
Less inflammation
Stabbing pain in brain is gone
Pain in base of neck is gone
No more joint pain (except in my right knee)
No more dysphagia
Improved digestion / better looking stool
Less dermatitis on face

 

[hopeful2]

My ME/CFS comes with a LOT of GI problems. I gave up gluten once years ago and my digestive tract felt so much better that I stupidly thought that I could reintroduce it. When I slowly reintroduced it I didn't notice any difference at first so I thought I had gotten away with it and could now tolerate it. It was just a matter of time though before my GI problems started acting up again and unfortunately because it was such a slow process, I didn't make the connection to the reintroduction of gluten until things got really bad again.

I removed gluten from my diet again a couple of years ago and doubt I will ever reintroduce it again. When my digestive problems are at their worst, my entire digestive tract from one end to the other will burn badly. This has stopped since going gluten free again. I also don't eat any sugar since being diagnosed with severe reactive hypoglycemia back in 1983. The only grains I currently eat are some gluten free oatmeal from Bob's Red Mill, rice and occasionally some quinoa. I do eat potatoes for starch and have not noticed any problems from doing that.

 

[hellytheelephant]

UPDATE: I have now done 38 days GF,I survived without any slips apart from one choc chip cookie and some non GF wafers at church.

Pain seems to be the thing that is primarily affected ( hurray!!), although I am still experimenting with the proportion of protein I have compared with carbs.

Alas, as the temperature has dropped in the last days and I had my stressful PIP ( disability benefit) assesment I am now in flare up and the pain is telling me it does not like the cold!

Inspired by those of you who are also Gluten Gree I am continuing on and will update this thread.

NB: regarding sugar, a friend said to me:'You know sugar is a drug! It's white powder that makes you feel good and when you don't have it you crave it!' Hx

 

[hellytheelephant]

As of today 40.7% of those who have voted are non- gluten eaters. I would have thought that is much higher than in the general population- although of course those who are GF are bound to be more responsive to this thread..