Nerve pain through my stomach

[Chris H]

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. 

[GFinDC]

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

[Chris H]

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. 

[Jennis74]

28 minutes ago, Chris H said:

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. 

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

[Fredo]

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

 

[cyclinglady]

@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!  

[GFinDC]

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.

[Chris H]

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. 

[Chris H]

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 

[Chris H]

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 

[Chris H]

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

[cyclinglady]

On 8/22/2019 at 5:37 AM, 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

Sometimes when I bend over, I get a pain in my stomach area.  It is enough to take my breath away, literally.  I thought I was getting gluten somehow into my diet, but even after the Fasano diet, I would  still get this “pinching feeling” and GERD like symptoms that would come and go.  I finally caved in and had a repeat endoscopy.  My GI found healthy small intestinal villi.  I had healed from celiac disease.  However, stomach biopsies revealed Chronic Autoimmune Gastritis (AIG)  That was and is the cause of my stomach pinching, it was not active celiac disease.  AIG ebbs and flows.  I try to exercise, reduce stress, short fasts, and I eat a clean diet that has few non-processed foods.    Anything  that might calm down inflammation/autoimmune response without the use of drugs (except for thyroid hormone replacement).    I also have Hashimoto’s as well.  This strategy seems to be working for me. 

Edited August 23, 2019 by cyclinglady

[GFinDC]

9 hours ago, Chris H said:

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. 

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

 

[Chris H]

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. ?

[GFinDC]

1 hour ago, Chris H said:

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. ?

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.

Edited August 24, 2019 by GFinDC

[Chris H]

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

[GFinDC]

5 hours ago, Chris H said:

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

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.

 

Edited September 1, 2019 by GFinDC

[pikakegirl]

Diagnosed Celiac 3 biopsies 2007. Been gluten-free and tested every 6 months since. Lots of nerve pain. Found my folic acid crashed and have the MTHFR gene so 3000k l-methyfolate daily helps the nerve pain. Also on FODMAP helps bloat. Found an inolerance to citrus/citric acid/ascorbic acid. Causes stomach and bladder pain immediately. Read that citric acid can be a dangerous allergy like peanuts/shellfish/sesame/eggs/dairy. Also legumes, poisonous uncooked plants and other plants that have high defenses against pests make me ill. Hope you get relief.

[Chris H]

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. 

[GFinDC]

I hope the nutritionist had some good info for you Chris.  You might try doing a search for celiac and your city name.  There are sometimes support groups at hospitals or on Facebook where you can find info on doctors who are celiac aware.

[Laurie61]

Last summer, after 2 milkshakes from fast food, (nothing else gluten-free) I got gut issues. They progressed to pain last winter, esp right after eating.  By spring was nearly ready to cave in and find a doctor.  One week of taking 1 tsp of coconut oil morning and last thing before bed, cured it. No problem all summer. Waiting until my stomach was growling hungry before eating when it was problematic and eating gluten-free licorice gummies helped reduce pain. Even now, I try to only eat when I feel hunger in my stomach.