Chris H

So I’ve been gluten free for 18 months now, and am still having some trouble with some nerve pain. On this journey since I realised that gluten was causing me chronic pain, I have discovered that dairy does as well, rice seems to be an issue as well as bananas. Now I’ve been off those foods and had a bad day yesterday as well as today. My diet is clean as possible. My question is, what other possibilities could it be? Bananas tend to make my feet hurt and make my legs really tight. If bananas do that, what else could cause similar problems? Could it be the fructose? Anyone else have these problems, my main source of carb is sweet potato. I’m at the point where I’m worried about almost everything I eat. Is it a potassium problem? Do I just eat too much and I need to take down my calories? Pretty rough times at the moment, if anyone could give me some helpful hints, I’d appreciate it 

16 hours ago, GFinDC said:

Hi Chris,

There is a thing called FODMAP intolerance that they think causes some NCGS (non-celiac gluten sensitive) people problems.  They (researchers) think it may explain a lot of the NCGS symptoms people have.   NCGS can cause symptoms similar to celiac disease but not show up on celiac tests.  There are more people with NCGS than there are with celiac disease.  So FODMAP/fructose testing might be worthwhile.  Oranges would fall into the FODMAP/fructose realm.  Dairy would also because of the lactose. 

https://www.healthline.com/nutrition/fodmaps-101

So it may be helpful to try a low FODMAP diet for a month?  Can't know without trying it I guess.  Although there is some testing available, your body can tell you the answer also.

It can take some time to work out the kinks in our diet and health.  I had about 5 years of symptoms after going gluten-free that were mostly due to various food intolerances that showed up.  I ended up doing food elimination diets to determine the culprit foods.

 

Thanks again for the reply, the fructose/fodmap line of thinking is where I’m at as well I think, I’m heading to my dietician tomorrow night, I’ll mention it to her. It’s disheartening but at the same time I feel like I’m getting closer to the answer. And then hopefully things can start to heal. Hopefully in the future I can reintroduce things I’ve taken out of my diet. 

On 8/24/2019 at 11:28 PM, GFinDC said:

Hi Chris,

That sounds rough!  My brother has peripheral neuropathy.  He has type 2 diabetes.  He craves sweets and carbs too.  I've tried to get him to stick with meats and veggies and nuts, but he came with a built-in stubborn streak a mile wide.  He is half blind from diabetes but still won't give up his sweets.

It's entirely possible to have more than one condition at the same time.  Which can make diagnosing from symptoms harder and confusing.  My other brother had both Crohn's and celiac disease.  Both conditions that share similar symptoms in some ways.

I don't remember if you were tested for diabetes?  It's a sneaky condition that can get worse over time.  And also very common.  For any nerve symptoms we generally suggest B-vitamins, as they are important for nerve health.  But if it is blood glucose/diabetes related, just vitamins won't solve the problem.  I think you can get a blood glucose meter fairly inexpensively at CVS and test yourself or an A1C test kit could help too.

The great thing about celiac and T2 diabetes is we can treat both conditions ourselves through diet.  So a little will power and diet change can make a huge difference in our health.

I had slightly high blood glucose for a while.  But I changed my diet and it went away.

Hey thanks for the reply. Actually ten years ago I had an episode I guess you can call it, where I had some sweets and an energy drink, felt really unwell, tired and uncontrollable thirst for a few weeks that went away, and the doctor told me I had pre-diabetes. Now since then, I’ve had countless blood tests. Especially since the chronic pain in my feet come on, I have probably had 4-5 blood tests on diabetes and celiac, pre diabetes and had glucose diabetes test. All of them negative. Every time. I just steer clear of sugars now. Now as soon as I have anything sweet, it goes to my head. I’m doing some reintroducing of foods this week, first was yoghurt last night, and have had a cloudy and foggy head all day. So I guess that counts that out? I’m going to try butter in a few days when things clear up again. Now I know that orange juice and yoghurt are both definitely triggers. Orange juice because of the sugars or the acidic nature of it? Not sure, tho I did have a glass a day for a week. I really appreciate the replies, it’s hard to go through this alone, this site helps a lot

16 hours ago, GFinDC said:

Hi Chris,

I am not sure what you mean by nerve pain, everyone tends to describe things in their own way.  But there are celiac related effects that could cause nerve pain.  One is known as peripheral nueropathy.  Gluten ataxia is similar and caused by an autoimmune attack on the brain.  People with gluten ataxia may have difficulty controlling their muscles.  Another possible cause is lack B vitamins or minerals.  Celiac can cause malasorption and interfere with our ability to get enough of critical nutrients.  Your doctor can test you for vitamin and mineral deficits.

This verywell health link describe peripheral nueropathy.

https://www.verywellhealth.com/gluten-and-neuropathy-562315

 

Yeh that’s what I think I have. Peripheral neuropathy. So at night my feet can get really hot or really cold. And weight bearing pain is really brutal. There’s obviously a lot more to it but that’s the base of it. I had dizzy spells when taking out the gluten due to withdrawal symptoms, but now when I do get glutened I get minor dizziness, which makes me think I might have ataxia. It’s really hard as my symptoms aren’t normal. Nothing is straight forward with me. ?

21 hours ago, Jennis74 said:

Literally just went to the doctor about this .  I described the pain as my funny bone being hit and it would even take my breath away . Started having random bloating too. I said I was feeling like I was when I was on gluten . I even did the rest the stomach clear liquid diet . Dr suggested starting a probiotic for 3-4 weeks. Feels I’m in a state of just plain malabsorption and inflammation . In no improvement or not feeling better than scanning and further work up.   I can say tomorrow is a week . Still having issues but not bloated so maybe helping. I chose a probiotic with Tumeric in it ... knock on wood this does the trick

Good luck with the probiotic! I just started a week ago taking them as well. I’ve been drinking kombucha when I can as well, though not too much as it’s a bit sweet and I don’t want to aggravate my nerve pain with the sugars. I hope the probiotic helps

21 hours ago, Fredo said:

Have you been diagnosed with Celiac?  It's not a fun process, but depending on your age it may be time for a colonoscopy / endoscopy any way...  It's really difficult to treat something without solid diagnosis...  That being said...   I use to endure consistent lower gut pain, specifically lower left side.  To this day I don't "know" why, but it was almost like that area of my intestines would swell and stay that way.  Sometimes from that area, I wold get the sensation that the circulation was being choked off from my legs...  Some days worse than others.  

I have been unable to work for many years, so I receive my medical "oversight" from a clinic.  Well, on my last visit, I told my dr. once again about the issue, and that I was suffering regular fatigue still, even after following a celiac diet for 4 years now after diagnosis.  

The dr. ordered a full blood panel to include vitamin levels.  The results came back B12 and D deficient.  So I started B12 shots and began taking 2000IU Vitamin D.   The pain in that lower left part of my gut is all but a memory, and my fatigue has lifted to where I feel closer to normal than I have in decades.... 

So....   Bottom line...  You can tinker with 'theory'  all day long, but it's best to at least go to a dr. and get the lab work done to know for sure.  Then work at seeing what is going to function best for you and your body.    Good luck to ya

 

Yeh All ive wanted for 6 years now was a doctor to just tell me what the problem is, and how I go about fixing it. I’ve had so many blood tests, all came back negative to celiac when I was eating gluten. But then I took gluten out when my nerve pain was at its worst and the pain relief was huge. That says a lot. But I’d LOVE a diagnosis. Just don’t know where to go next, my GP is stumped, neurologist told me he doesn’t know what it is. 

22 hours ago, GFinDC said:

Have you been checked for a stomach ulcer?  Orange juice is acidic and can make an ulcer feel worse.

Nah I haven’t been checked for an ulcer, but I’m having no pain in my stomach 

14 hours ago, cyclinglady said:

@Fredo

Excellent advice.  One of the main reasons why celiac disease can be so hard to diagnosis is because symptoms for it overlap with so many other illnesses.  

I kept thinking that gluten was somehow getting into my diet.  Turns out, I have healed from celiac disease. A repeat biopsy confirmed this.  Unfortunately, they found Chronic Autoimmune Gastritis.  I had had even trialed the Dr. Fasano diet (super strict gluten-free) and that did not help.  So, not everything is about celiac disease.  

@Chris H

If you can, get to a GI.  It might be worth to do a gluten challenge and get tested for celiac disease.   If you can’t and you want to continue to experiment, make sure you are really gluten free.  Avoid processed foods as much as possible and do not eat out until you are well.  

I kept thinking my niece had celiac disease, turns out she has Crohn’s.  Good thing she finally found a good GI!  

I’ve been really strict with the gluten, I feel like I have anyway. I hardly ever eat out, and cook most of my meals. The GI sounds like a good idea, I’ve  been looking into it. Thanks for your message, I really appreciate it, I’ve read a lot of your posts on other forums, you really know your stuff. It’s really comforting to read, thank you 

11 hours ago, GFinDC said:

A GI visit is a good idea.  Crohn's or ulcerative colitis are possibilities also.  The D could be caused by celiac disease, or something else.  People with Crohn's sometimes do better on a gluten-free diet.  Lots of sugar (fruits) could be a problem for any of those conditions.  Lots of fiber can be a problem for Crohn's.  Nuts can be hard to digest and tend to have lots of fiber.  But people with celiac can have difficulty with nuts also.

Too much water can dilute the acid in your stomach and interfere with digestion.  There is also the possibility of gall bladder issues causing pain.

All these things are great business for a GI to investigate.  And they are the ones to consult in most cases.  It is a good idea to do an internet search for celiac, doctor, city name.  You may find a doctor in your area who treats or knows about celiac disease.

Thanks so much for your message back, I’ve been googling GI’s all day. Hopefully one knows something about nerve pain caused by gluten. Thanks for the tips on the other stuff as well, I’ve made a point to sip my water the last few days instead of gulping it. I’ve put a lot of things in place to try and take the pressure off my gut. It’s so frustrating at times. 

6 minutes ago, GFinDC said:

Have you been checked for a stomach ulcer?  Orange juice is acidic and can make an ulcer feel worse.

No I haven’t, but I have no pain in my stomach. Which makes my condition really hard to pinpoint, I have no actual stomach pain or discomfort, but I feel it in my feet and body, sometimes straight away, sometimes hours later. I also haven’t had a solid bowel movement in a very long time. 

Hello I’m just posting on here to get some advice on my diet. I suffer from nerve pain that comes from my stomach, I haven’t been diagnosed but that’s what is happening, I took gluten out, had pain relief, then it came back, took out dairy and same thing, became sensitive to something else.  I’ve been strict gluten free for nearly a year now, and now dairy free. My diet consists of veggies, eggs, fruit, meat, nuts and seeds mostly. After reading a lot of posts on here, I’m beginning to think I have a leaky gut that is causing me the nerve pain, as my gut is so sensitive. I drank orange juice a few days in a row last week and my pain flared up. I think it was the orange juice but it’s so hard to tell. Does anyone have any tips on what to take out of my diet next? Is 4-5 servings of fruit a day too much sugar for someone with a leaky gut? Is it possible to drink too much water with my food in turn putting pressure on my stomach? Are almonds tough on the stomach? Is cross reaction a thing? I’ve taken out rice but without it my energy levels are at a really low level, as a carpenter it’s so tough to get through a day without carbs  If these are stupid questions I apologise, but I’m really at a loss as to where I go from here. ANY advice is welcomed. 

On 7/17/2019 at 2:25 AM, Solafide3 said:

Hi everyone,

I apologize if this is a long post, but I am in desperate need of help. I started having neurological symptoms in Dec 2018. Muscle twitching, muscle weakness, balance problems, joint and muscle pain. Became TERRIFIED of ALS. Went to the neurologist. She did a blood test and diagnosed me with Non-Celiac Gluten Sensitivity.

1.This is where my first problem starts. Other doctors have told me that NCGS isn’t real. I have also read the blood tests aren’t reliable, but this neurologist is swearing by it?

2.I admit I haven’t managed to stay gluten free for a whole 2 weeks yet. It seems that my muscle twitching (I have no vitamin deficiencies) gets way worse when I stop eating gluten, and gets better when I reintroduce gluten. Is this some sort of weird withdrawal?

3.I have a dull ache that only happens on the right side of my body. On my palm, my butt bone, and bottom of my foot. It also feels like my ankle and wrist are weak when I walk. Does anybody else have this?

I will be so grateful if someone can answer these questions. I live in Alabama and unfortunately gluten free is laughed at around here which has led me to believe I have ALS even though I have had 2 clean EMGs. I don’t mean to be dramatic but I just can’t function with this worry. Thank you

Erica

 

 

•  

Hello Erica, my name is chris and I’m from Australia. I have nervous system issues as well, mild balance problems, chronic nerve pain in my feet, fatigue. I went gluten free as a desperate attempt to try and help the pain in my feet as I had become addicted to painkillers and struggled through every day at work. Since going gluten free my pain has gone from a 9/10 while standing to a 5/10. It’s been a rocky road though, as I went gluten free over a year ago, and had really awful withdrawals, dizzy, fatigue, sore/weak neck, nauseous, headache, which lasted about 2-3 months. I’m now past the worst of that, but still have some pain in my feet. But have discovered new foods that aggregate my feet, fatty foods like red meat and coconut cream, dairy and corn all aggravate my symptoms. I’m seeing a dietician and working on exactly what is triggering me, as she thinks my stomach is trying to heal and I keep giving it triggers. There are tough days but I can almost see the light. I hope this message helps you to know you’re not on your own, diet is everything. How are you going now? If anyone has any other advice please comment, none of my doctors I’ve been to have been able to diagnose me, I’ve had to do the whole thing from the internet. 

Sadly my nerve pain has gone back to where it was 9 months ago. With really slight numbness in my left toe. Since quitting gluten I haven’t felt the numbing of my toe. I’m getting a food intolerance test next Thursday. My diet is so strict I don’t know where I’m going wrong. But something is definitely affecting my nerves, not as bad as gluten does but it definitely affects them. I’m hoping it’s just a setback. Feel like I’m so close but so far away. 

9 minutes ago, GFinDC said:

Hi Chris,

Have you looked into diabetic nerve pain and also plantar fascitis?  Both of those conditions can cause foot pain.  The diabetic nueropathy would react to carby foods like rice and sugar though.

B-12 is often suggested for nerve problems, but other B vitamins can help too.

I’ve had exhaustive tests for both PF and diabetes, as that’s what the doctors thought it was. I’ve spent about $30,000 on trying to get a diagnosis on my feet, and I finally landed on gluten ataxia. When I took gluten out of my diet, for the first time in years I actually had pain relief. I also had all these very hardcore withdrawal symptoms, dizziness, fatigue, weak neck, lump in throat, balance problems. All neurological, they finally subsided and the pain in the feet was still better, but I’ve been a bit up and down since. I’ve become a lot more sensitive to certain foods now, I’m gluten free, dairy free and corn free, but I still feel like I’m reacting to something. It’s hard

20 hours ago, Ennis_TX said:

Look up Paleo Diet, and since your mention sugar, I would try the Keto version with no carbs. Ketosummit has a bunch of recipes. Just use coconut oil in place of anything for butter or ghee, and full fat coconut milk canned in place of heavy cream recipes. I also have some simple meals on my blog here. 

Neuropathy, if it is caused by nerve damage (gluten ataxia) then you will have years of slow healing. If it is just a reaction or certain foods/chemicals interfere with nerve issues then a few months it will clear up

So does that mean quinoa as well? I work in construction, 10 hours a day, which is obviously very uncomfortable with my sore feet, but it also means I need to have carbs to get through a day, as my work is very labour intensive. I’ve decided to cut out rice for a week and see if there is any improvement. Thanks for your help, any more advice is appreciated.

Hello I’m just messaging to see how your neuropathy is going? Have you had gradual improvements as the years gone on? Reading your post, you are having really similar symptoms to me. I’ve been 9 months gluten free now, but have had a lot of slip ups. Big improvement at the start, then has been a roller coaster since. Dairy fires my nerves up, so does corn, and obviously gluten, sugar. Now I’m thinking rice might fire up my nerves. Not leaving me a lot of food to eat 

In case anyone was following this thread, my head has finally adjusted to the no gluten. It took a long time though, I put it down to sever withdrawals, all up it took about 5-6 months for all my neurological symptoms to calm down. The foot pain had been really good up to about 2 weeks ago, where I had a flare up, and I think it may have had to do with dairy. Which is something new again, so I’ve had to cut dairy out as well as gluten, hoping my feet will settle down and start healing the nerves. I have a long way to go, but hoping I’m on the right path. Thanks for all the replies. If anyone stumbles onto this thread, and you have chronic pain in your feet and it can’t be diagnosed by any doctors, consider eliminating gluten out of your diet! 

Thanks for all the replies, after a few weeks testing with food, I’ve figured out that I’m really sensitive to caffeine, alcohol and sugar. I eat or drink either of those, my brain just goes fuzzy, I get real short bursts of dizziness, and I just get tired and head gets super cloudy. Is this normal? Should I see a neurologist about this? I was hoping that it would just be the transition period but it’s been months and it’s still hanging around 

So I’ve had chronic pain in my feet for 5 years, and a dietician recommended I try a gluten free diet, which seen improvements in my feet, first time in years, and I was ecstatic with it, but with the relief of pain in my feet, I had all these other symptoms show up, mild dizziness/loss of balance, tiredness, spacey head feeling, anxiousness. I went back on gluten for a week to confirm it was gluten causing the pain, and the night of having a bowl of pasta, my feet were on fire and pain again for days after it. So I’m confident I have a gluten intolerance, but now I’ve been on the gluten free diet for about a week again, and all the symptoms in my head have come back. The first time I was on the diet it was for about 5 weeks and I was still getting those synptoms. Do I need to just wait longer for my body and brain to adjust? I’ve had all blood tests and mri’s done, everything is normal. Just wondering if anyone else has had Iva long of an adjustment period? I want to feel normal again 

Hello I’m just curious if anyone else had lightheadedness/dizziness when they quit gluten. This is my 4th week now and I still have these short instances where my head will be a bit dizzy, or just a bit slow when I move; it’s like it’s in slow-mo.  Like really mild vertigo, has anyone else had this or should I be worried? As I’ve had chronic pain for years now, and I’m a bit worried somewhere deep down I have an autoimmune disease. I never had the issue before quitting gluten, which makes me think it is that.  Thanks for your input

13 hours ago, Ennis_TX said:

You should probably consider going back on gluten and getting tested for celiac disease before moving on. You have to be eating it for 8-12 weeks prior, some do not have noticeable digestive issues but have the disease manifest in other ways.
Open Original Shared Link
I get gluten ataxia with exposure leading to lack of pain/feeling/temperature sensitivity. And it can wane in waves for over a week after a accidental exposure and seems to be more sensitive then my gut to it.

I’ve had several blood tests with my GP and neurologist and neither of them mentioned anything about celiac or gluten intolerance, though I’m not sure they tested for it. This is my only option that makes the pain ease, so I’m going to push ahead with it and hope it clears up. The diet doesn’t bother me, I like to eat healthy anyway. But I think it is manifestin, as 2 weeks in I was slightly glutened and my toe tingled for a few days. It’s been a tough 5 years, hopefully this is the way through it. If it’s not this I’m lost

Hello I’m new here, I’ve had chronic foot pain for 5 years, with no improvement no matter what was done or prescribed to me, after some heavy google work, I read that it was possible to get neuropathy, nerve pain in feet if gluten intolerant. I was skeptical at first, but after quitting gluten, one week in my pain halved. For the first time in 5 years in improved. Now since that first week in it has relapsed a few times, with the pain coming back and also dealing with gluten withdrawals. I’m 3 and half weeks in, with the hope that my nerve pain continues to slowly improve. Just wondering if anyone else on here has something similar? I’m just wondering if the relapsed pain might be more to do with the withdrawal pain. Thanks for the help, it’s appreciated