Are these symptoms normal after going gluten free?

[Salomon]

So I'm over a couple of months into going gluten-free. Some of my symptoms have continued to lessen, but some haven't. I had these symptoms I'm mentioning here since March, and they aren't going away.

My veins in my body have been more popping out than normal, and if I raise my hands above my hand, my hands go cold. Tingling in hands and feet are mildly present, but much more noticeable if I do something that causes pressure like lifting weights and playing guitar. (the tingling goes away moments after) Fingers are sore.

Whenever I wake up, my body feels like it's pulsating. My heartbeat will be normal, but it feels like 100 little heartbeats across my body going double faster, I can feel it when I touch my body. Blood flow? Nerves?

I went to the doctor 3 times and told them about these symptoms every time, and they had nothing at all to say about it. I mean, they ask the questions about tingling in hands and feet, and I say yes and tell them about the other things. 2 visits, and 1 physical, and he said he sees nothing remarkable.

Only thing that stood out from my *basic blood test, was high cortisol, which I definitely knew I would have because I could feel it for months, I had insomnia bad, sometimes even a sleeping pill wouldn't work. It felt like permanently being on way too much coffee, except I wasn't drinking coffee. It's not as bad now though.

Just wondering if anyone experienced this, knows anything about it (couldn't find anything in a web search) I just don't want to overlook something while thinking 'oh it's just a celiac thing, it'll go away in time' when I could be in danger of something else.

*not a celiac test, should note I haven't been diagnosed through any test, I couldn't do a gluten challenge, I failed after 2 weeks, things were at the point of unbearable. I don't want to be damaging myself any further, I've likely had this disease for many years.

[Wheatwacked]

When you eat gluten free you are not getting the vitamins that are required in non gluten free foods to be fortified.

It's not that a gluten free diet is inherently deficient, but the Western Diet is and we continue to eat a Western Diet just without the gluten.

There are several different vitamins that could be causing your peripheral neuropathy. 

First on the list would be Thiamin.  There isn't an easy test for deficiency.  The WHO recommends supplementing and assessing if there is improvement.  Start with 100 - 500 mg a day, or Benfothiamine is a fat soluable synthetic that works better for some.  Unlike many drugs that take months to work, if you are deficient in a vitamin or mineral supplementing it works in in hours or days.

Iodine  Why You NEED Iodine - Discussion with Dr. David Brownstein

Potassium 100% DV recommended in the US is 4700 mg a day.  Most Americans only get less than 3000 mg.  Instead if increasing Potassium, the DASH diet limits salt.  Bottom line for heart health is a 2:1 or greater potassium to sodium ratio.

As an example here is what I take.

• 10,000 IU vitamin D to control autoimmune.
• 500 mg Thiamine - neurologic symptoms
• 500 mg Nicotinic Acid - increase capillary blood flow
• 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.).
• 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine.
• Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  I eat Nori and Kelp

[Salomon]

8 minutes ago, Wheatwacked said:

When you eat gluten free you are not getting the vitamins that are required in non gluten free foods to be fortified.

It's not that a gluten free diet is inherently deficient, but the Western Diet is and we continue to eat a Western Diet just without the gluten.

There are several different vitamins that could be causing your peripheral neuropathy. 

 

Thank you very much for the reply and info. 

[plumbago]

Cortisol is tricky to measure given how much it fluctuates. I've never seen it ordered on routine blood tests, which makes me wonder which doctor ordered it and the reason he/she gave you for ordering it. High cortisol may explain the lack of sleep which in turn can explain high cortisol and round and round we go in a vicious cycle. I'm so sorry. Curious to know if you had any blood tests for b12 or anything else like vitamin D.

Plumbago

[Salomon]

4 hours ago, plumbago said:

Cortisol is tricky to measure given how much it fluctuates. I've never seen it ordered on routine blood tests, which makes me wonder which doctor ordered it and the reason he/she gave you for ordering it. High cortisol may explain the lack of sleep which in turn can explain high cortisol and round and round we go in a vicious cycle. I'm so sorry. Curious to know if you had any blood tests for b12 or anything else like vitamin D.

Plumbago

The doctor ordered the cortisol test because I asked them. Honestly I'm not sure what else happened with my blood test, or what kind of test it was overall. I was told I have high cortisol, was given no solution, and that my cholesterol is slightly above normal. Was given no paper on the test either. 

[Scott Adams]

It's possible you have celiac disease, but since you can't eat gluten long enough to be tested it's hard to know for sure, and I mention this only because you could also have non-celiac gluten sensitivity--one causes villi damage and the other doesn't. Has your diet been 100% gluten-free? Do you eat out in restaurants? If so, you may be getting contamination in your diet. The first step is to verify this.

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[plumbago]

Ok, @Salomon - one thing I've learned, is that doctors are not fond of ordering blood tests unless they know exactly why they are ordering them, so that may explain the lack of action on your doctor's part. (It may, not necessarily does.) There are good reasons for this.

If you feel the high cortisol is significant, then I would do more research and maybe check in with an endocrinologist at some point. Again, cortisol tests are tricky to get accurate readings on because of the daily fluctuations.

Otherwise, I agree with what Scott wrote. You could also do a genetic test for Celiac, but a positive could just mean that you could get it, not necessarily that you have.

Plumbago

[Raquel2021]

I find exercise causes me to have insomnia.  I have exercise intolerance.  Try maybe cutting down on exercise and see what happens for the sleep issue.  Also eating a good variety of vegetables especially cruciferous vegetables has help with insomnia. Minimum of 5 cups of vegetables in a day. Doing green smoothies  and soups easy to digest and highly nutritious. Cutting out processed food, sugar. Eating a good variety of meat/fish. Wild caught fish and grass fed meat can help as well. If possible I know is hard to follow such a diet.

[Salomon]

On 11/3/2023 at 12:40 PM, Scott Adams said:

It's possible you have celiac disease, but since you can't eat gluten long enough to be tested it's hard to know for sure, and I mention this only because you could also have non-celiac gluten sensitivity--one causes villi damage and the other doesn't. Has your diet been 100% gluten-free? Do you eat out in restaurants? If so, you may be getting contamination in your diet. The first step is to verify this.

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

I had symptoms for years, and I only kept getting more of them (inflammation in my chest, depression, then anxiety and insomnia) and randomly tried a gluten free diet to lose weight. Felt better than I've felt in many years in just 3 days, and the weight started melting off. I stayed gluten free from Jun 20 of this year, to Aug. 6 went I started a gluten challenge. Felt horrible all over again by the next day, and for the next 2 weeks until it was unbearable. I felt good the whole time before I started the gluten challenge. Accidently ate gluten on Sept 6 and felt bad again for a couple of days. I don't seem to get any of the symptoms people get with gluten sensitivity from what I've read. I'll try not eating those foods you listed to see what happens.

[Jujuconnor]

On 11/2/2023 at 10:17 PM, Salomon said:

So I'm over a couple of months into going gluten-free. Some of my symptoms have continued to lessen, but some haven't. I had these symptoms I'm mentioning here since March, and they aren't going away.

My veins in my body have been more popping out than normal, and if I raise my hands above my hand, my hands go cold. Tingling in hands and feet are mildly present, but much more noticeable if I do something that causes pressure like lifting weights and playing guitar. (the tingling goes away moments after) Fingers are sore.

Whenever I wake up, my body feels like it's pulsating. My heartbeat will be normal, but it feels like 100 little heartbeats across my body going double faster, I can feel it when I touch my body. Blood flow? Nerves?

I went to the doctor 3 times and told them about these symptoms every time, and they had nothing at all to say about it. I mean, they ask the questions about tingling in hands and feet, and I say yes and tell them about the other things. 2 visits, and 1 physical, and he said he sees nothing remarkable.

Only thing that stood out from my *basic blood test, was high cortisol, which I definitely knew I would have because I could feel it for months, I had insomnia bad, sometimes even a sleeping pill wouldn't work. It felt like permanently being on way too much coffee, except I wasn't drinking coffee. It's not as bad now though.

Just wondering if anyone experienced this, knows anything about it (couldn't find anything in a web search) I just don't want to overlook something while thinking 'oh it's just a celiac thing, it'll go away in time' when I could be in danger of something else.

*not a celiac test, should note I haven't been diagnosed through any test, I couldn't do a gluten challenge, I failed after 2 weeks, things were at the point of unbearable. I don't want to be damaging myself any further, I've likely had this disease for many years.

A simple blood test will confirm if your celiac or not…..

[Salomon]

On 11/7/2023 at 10:05 AM, Jujuconnor said:

A simple blood test will confirm if your celiac or not…..

Why does anyone do the gluten challenge then?

[Jujuconnor]

5 hours ago, Salomon said:

Why does anyone do the gluten challenge then?

Is that an internet or social media thing?  I would ignore that and get the blood test if you’re really concerned about it.  There has been diet fads forever. There’s the no carb, grapefruit only, etc., etc.  The gluten challenge might be good for gluten sensitivity or intolerance. Celiac disease is a real medical condition.  My small intestines are almost completely destroyed.  I’ve had a Double lung transplant, life support for 40 days, icu for 90 days, died 3X, kidney failure, diabetes, panic attacks so bad they had to sedate me and the panic attacks were from fear of me soiling myself constantly.  We counted 14 times one day.  Now, finally about 6 weeks ago I was diagnosed with celiac disease.  That has changed my life tremendously .  

[Jujuconnor]

And when I say almost completely destroyed, I mean almost completely destroyed. While on life support and about 4 weeks after I woke up I had a feeding tube.  About 3 months.  They pump oats and barley into your stomach, that’s it.  Oats and barley, big no no for celiacs.  Not knowing I was celiac that continued and when I learned how to eat again there was no gluten restrictions.  I continued to eat gluten (I love bread & pasta) until 6 weeks ago.  Finally, just for a couple days, I think I’m getting better.  

[Teresa Dean]

On 11/2/2023 at 10:17 PM, Salomon said:

So I'm over a couple of months into going gluten-free. Some of my symptoms have continued to lessen, but some haven't. I had these symptoms I'm mentioning here since March, and they aren't going away.

My veins in my body have been more popping out than normal, and if I raise my hands above my hand, my hands go cold. Tingling in hands and feet are mildly present, but much more noticeable if I do something that causes pressure like lifting weights and playing guitar. (the tingling goes away moments after) Fingers are sore.

Whenever I wake up, my body feels like it's pulsating. My heartbeat will be normal, but it feels like 100 little heartbeats across my body going double faster, I can feel it when I touch my body. Blood flow? Nerves?

I went to the doctor 3 times and told them about these symptoms every time, and they had nothing at all to say about it. I mean, they ask the questions about tingling in hands and feet, and I say yes and tell them about the other things. 2 visits, and 1 physical, and he said he sees nothing remarkable.

Only thing that stood out from my *basic blood test, was high cortisol, which I definitely knew I would have because I could feel it for months, I had insomnia bad, sometimes even a sleeping pill wouldn't work. It felt like permanently being on way too much coffee, except I wasn't drinking coffee. It's not as bad now though.

Just wondering if anyone experienced this, knows anything about it (couldn't find anything in a web search) I just don't want to overlook something while thinking 'oh it's just a celiac thing, it'll go away in time' when I could be in danger of something else.

*not a celiac test, should note I haven't been diagnosed through any test, I couldn't do a gluten challenge, I failed after 2 weeks, things were at the point of unbearable. I don't want to be damaging myself any further, I've likely had this disease for many years.

My symptoms are nothing as yours sound….. and I am better…… I just feel I have found the safest foods for me to eat (few but good to me) because so much I have zero desire to eat anyway. My blood test in June for yearly physical (I asked they check for decencies too)…….I’m not sure any decencies were truly checked but EVERYTHING thyroid was.  I was absolutely shocked when all my blood test (Complete Blood Panel) results were all absolutely normal!!!!!!! Thankful but shocked……. The food pyramid that we all are suggested to use as a guide to a balanced diet…… I think the food pyramid is phonie balognie!!!!!

1 hour ago, Jujuconnor said:

And when I say almost completely destroyed, I mean almost completely destroyed. While on life support and about 4 weeks after I woke up I had a feeding tube.  About 3 months.  They pump oats and barley into your stomach, that’s it.  Oats and barley, big no no for celiacs.  Not knowing I was celiac that continued and when I learned how to eat again there was no gluten restrictions.  I continued to eat gluten (I love bread & pasta) until 6 weeks ago.  Finally, just for a couple days, I think I’m getting better.  

Bless your heart!!!!!    

[Teresa Dean]

2 hours ago, Jujuconnor said:

Is that an internet or social media thing?  I would ignore that and get the blood test if you’re really concerned about it.  There has been diet fads forever. There’s the no carb, grapefruit only, etc., etc.  The gluten challenge might be good for gluten sensitivity or intolerance. Celiac disease is a real medical condition.  My small intestines are almost completely destroyed.  I’ve had a Double lung transplant, life support for 40 days, icu for 90 days, died 3X, kidney failure, diabetes, panic attacks so bad they had to sedate me and the panic attacks were from fear of me soiling myself constantly.  We counted 14 times one day.  Now, finally about 6 weeks ago I was diagnosed with celiac disease.  That has changed my life tremendously .  

Wow you’ve had and have your share of health related issues……… yes, I know celiac disease is a real medical condition.  So is microscopic colitis.  
After my nephew was just recently diagnosed with celiac disease I have read several articles and all the articles imply that often celiac contributes to MC  and that MC can contribute to celiacs!!! All this gut stuff is so hard to believe but it changes so much for a persons life.  

[Scott Adams]

8 hours ago, Salomon said:

Why does anyone do the gluten challenge then?

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[Jujuconnor]

2 hours ago, Teresa Dean said:

Wow you’ve had and have your share of health related issues……… yes, I know celiac disease is a real medical condition.  So is microscopic colitis.  
After my nephew was just recently diagnosed with celiac disease I have read several articles and all the articles imply that often celiac contributes to MC  and that MC can contribute to celiacs!!! All this gut stuff is so hard to believe but it changes so much for a persons life.  

Celiac is an autoimmune disease, and with autoimmune diseases they come in 2’s or more……RA started all my problems.  They think the surgery from the transplant started the celiac.  They say sometimes surgery causes it for no reason….I’m no expert, all I can do is share my experience.  I wish you and your nephew the best….

[Salomon]

So yeah, my point was, it isn't a 'simple' blood test if I have to torture and destroy myself for weeks. (I'm already destroyed)

And unless there are other things this could be, I don't see the reason to. I eat gluten, I get celiac symptoms, not allergy or sensitivity symptoms, (I wouldn't feel symptoms for allergy or sensitivity two months later anyway, right?) and some of those symptoms have become perpetual ones until my gut heals.

 

[Jujuconnor]

I didn’t prepare or do anything for the blood test.  For the colonoscopy I had to do the prep…..I get my medical work done at Mayo Clinic, I trust they know what they’re doing.  I’m sure there’s all kinds of tests out there, mine was a simple blood draw and the colonoscopy.  No further testing was needed.  My treatment plan…….gluten free for life.  Good luck to you and whatever you decide to do.  

[plumbago]

8 hours ago, Jujuconnor said:

I didn’t prepare or do anything for the blood test.

I think @Salomon meant that he/she would have to eat something with gluten in it.

[Jujuconnor]

20 hours ago, Scott Adams said:

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

 

14 hours ago, Salomon said:

So yeah, my point was, it isn't a 'simple' blood test if I have to torture and destroy myself for weeks. (I'm already destroyed)

And unless there are other things this could be, I don't see the reason to. I eat gluten, I get celiac symptoms, not allergy or sensitivity symptoms, (I wouldn't feel symptoms for allergy or sensitivity two months later anyway, right?) and some of those symptoms have become perpetual ones until my gut heals.

 

 

[Jujuconnor]

I wouldn’t eat gluten again for a test……..there is no benefit in a official diagnosis that I know of and there is no cure.  The only treatment is a gluten free diet.  Trust your doctors and if you don’t - get a new one.  If I were in your position I would just go gluten free and make sure there’s no other hidden problem.  Good luck!

[mbr22m]

Have you been tested for other autoimmune diseases (ANA test)?  Have you been tested for vitamin deficiencies (iron, vitamin D, B12)? And also, have you had your thyroid checked (TSH, T3, T4 and thyroid antibody tests)? 

[Jujuconnor]

22 hours ago, mbr22m said:

Have you been tested for other autoimmune diseases (ANA test)?  Have you been tested for vitamin deficiencies (iron, vitamin D, B12)? And also, have you had your thyroid checked (TSH, T3, T4 and thyroid antibody tests)? 

Yes, on vitamin D 1000 mg.  Yes I have hashimotos.  I think the runs are from the anti rejection medications from the lung transplant.  

[Jujuconnor]

25 minutes ago, Jujuconnor said:

Yes, on vitamin D 1000 mg.  Yes I have hashimotos.  I think the runs are from the anti rejection medications from the lung transplant.  

Have RA, osteoarthritis, degenerative arthritis and kidney disease.