Gluten Intolerance Withdrawal and Healing Process

[Shamogi]

Hi,

I have just joined the forum.

I have had CFS for around twenty years now.I have also suffered with depression,anxiety,paranoia,brain fog/confusion,chronic stiffness in my joints,mood swings,difficulty concentrating,racing thoughts/mania,feverish chills,shallow breath.I found it hard to stretch my body and use my muscles correctly.I had to give up yoga classes after seven years because I lacked muscle memory and was 'bypassing' my joints to try and get into poses,causing more problems.

I have tried all sorts of things,had many tests done.Although the doctors have tended to view things as mental health related,I have always felt there was a physical origin to the issue.The tests showed I have reactive hypoglycemia.I cut out sugar and high sugar fruits and found it easier to manage moods by recognising when I was going hypo,which would lead to irritation,anger,frustration.I learned how to combat depression.

But I still had the fatigue,the feeling of heaviness,the tension in my muscles and joints,the anxiety,paranoia and mood swings.I felt so uncomfortable in my body.I still couldn't access muscles and use them properly,I felt like my brain was bursting out of my skull.My head and neck still felt like they were held in a vice.I had a lot of tension headaches.I had to constantly remind myself to breath.I felt crap in general.

I have been seeing an osteopath regularly for four years now.This has helped me to regain some flexibility.

I recently visited an herbalist,who believes I am gluten and dairy intolerant.I therefore went on a gluten and dairy free diet five and a half weeks ago.Since then I have noticed an improvement in my ability to access and use my muscles correctly.I am regaining flexibility.I am feeling power returning to my body.My head feels less swollen.I am regaining my senses,which felt like they were receiving sensory data from behind a barrier.

I gather that gluten can cause inflammation in individuals who have gluten sensitivity,as the body's auto-immune response kicks in to fight the threat.And this inflammation can cause many different symptoms.For myself,I appear to have had inflammation in my brain,affecting my nervous system,breathing,co-ordination,mobility.

Since changing my diet,I have had some strange pains in my head/face at times.I have felt more lethargic than usual.I have been feeling emotionally volatile.I had a manic episode.(This is not normal for me,I have generally been too tired to get manic and energised,though I have had bipolar tendencies).During this episode I felt marvellous,super confident,played guitar better than ever,hardly slept in three days.

I would like to ask if there are others who have had similar symptoms of gluten intolerance and/or similar experiences during the adjustment to a gluten free diet?

How long did it take to feel better?

And has anybody had mental health diagnoses/issues which cleared up after going gluten-free?

Thanks,

Shamogi

 

[trents]

1 hour ago, Shamogi said:

Hi,

I have just joined the forum.

I have had CFS for around twenty years now.I have also suffered with depression,anxiety,paranoia,brain fog/confusion,chronic stiffness in my joints,mood swings,difficulty concentrating,racing thoughts/mania,feverish chills,shallow breath.I found it hard to stretch my body and use my muscles correctly.I had to give up yoga classes after seven years because I lacked muscle memory and was 'bypassing' my joints to try and get into poses,causing more problems.

I have tried all sorts of things,had many tests done.Although the doctors have tended to view things as mental health related,I have always felt there was a physical origin to the issue.The tests showed I have reactive hypoglycemia.I cut out sugar and high sugar fruits and found it easier to manage moods by recognising when I was going hypo,which would lead to irritation,anger,frustration.I learned how to combat depression.

But I still had the fatigue,the feeling of heaviness,the tension in my muscles and joints,the anxiety,paranoia and mood swings.I felt so uncomfortable in my body.I still couldn't access muscles and use them properly,I felt like my brain was bursting out of my skull.My head and neck still felt like they were held in a vice.I had a lot of tension headaches.I had to constantly remind myself to breath.I felt crap in general.

I have been seeing an osteopath regularly for four years now.This has helped me to regain some flexibility.

I recently visited an herbalist,who believes I am gluten and dairy intolerant.I therefore went on a gluten and dairy free diet five and a half weeks ago.Since then I have noticed an improvement in my ability to access and use my muscles correctly.I am regaining flexibility.I am feeling power returning to my body.My head feels less swollen.I am regaining my senses,which felt like they were receiving sensory data from behind a barrier.

I gather that gluten can cause inflammation in individuals who have gluten sensitivity,as the body's auto-immune response kicks in to fight the threat.And this inflammation can cause many different symptoms.For myself,I appear to have had inflammation in my brain,affecting my nervous system,breathing,co-ordination,mobility.

Since changing my diet,I have had some strange pains in my head/face at times.I have felt more lethargic than usual.I have been feeling emotionally volatile.I had a manic episode.(This is not normal for me,I have generally been too tired to get manic and energised,though I have had bipolar tendencies).During this episode I felt marvellous,super confident,played guitar better than ever,hardly slept in three days.

I would like to ask if there are others who have had similar symptoms of gluten intolerance and/or similar experiences during the adjustment to a gluten free diet?

How long did it take to feel better?

And has anybody had mental health diagnoses/issues which cleared up after going gluten-free?

Thanks,

Shamogi

 

Welcome to the forum, Shamogi!

I can answer one of your questions at least. Yes, we have had many forum participants report definite improvement in mental health issues when going off gluten.

A number of the symptoms you describe are common to celiac disease and most are related to vitamin and mineral deficiencies. Celiac disease is an autoimmune condition that triggers inflammation in the small bowel lining (the "villi")  when gluten is ingested. This damages the villi over time which, in turn, reduces the ability to absorb nutrition from the food we eat. Essentially all nutrient absorption happens here. Even though a person may be eating a healthy diet, they will not be absorbing nutrients efficiently if they have celiac disease.

Shamogi, you really do need to be tested for celiac disease. The first stage of testing is a simple blood test that checks for specific antibodies produced by the inflammation. Here is a primer explaining what tests can be done: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ You would want to ask for a "full celiac panel" and not just the tTG-IGA.

If the serum antibody testing shows positive, your physician may want to follow that up with an endoscopy/biopsy to have the villi microscopically inspected for damage to confirm what the antibody tests show. But here's the catch. You would need to go back on regular amounts of gluten (2 slices of wheat bread daily or the equivalent) for 6-8 weeks before the antibody test and for two weeks before the endoscopy/biopsy.

If your testing demonstrates you have celiac disease you should also put yourself on vitamin mineral supplementation in order to more quickly correct your nutritional deficiencies. B-complex, D3, Magnesium are commonly recommended by our experienced members.

[Shamogi]

Hi trents,

 

thank-you for your reply.That is very encouraging to hear about the mental health improvements.And thanks for the information about celiac disease.

I had a celiac test a few years ago,which came back negative.I do not have any severe gastrointestinal issues,apart from noticing bloating and wind after consuming milk and sometimes I had some pain in my guts after eating wheat products.Is it possible to have celiac without experiencing many digestive/gut issues?

I had been planning on calling my doctor today to order some blood tests,I shall add celiac to the list,in case things have deteriorated since then.

I have been going on the assumption that I have non-celiac gluten intolerance.I have been taking probiotics,magnesium,vitamins  D3 and C,and plan to get some B complex too.

A couple of days ago,I noticed my D3 has 'microcrystalline cellulose' listed in the ingredients.As the bottle does not have 'gluten free' on it,I am assuming the above ingredient is wheat derived.I will be buying a gluten/dairy free alternative.

All the best,

Shamogi

[trents]

Yes, it is certainly possible to have celiac disease without significant gastrointestinal issues, at least until the disease gets pretty advanced and there is significant damage to the villi. We call that "silent celiac disease" and it is not uncommon. But the pain in your gut when you consume wheat products is certainly a classic symptom of celiac disease. Unless your consumption of gluten is regular for 6-8 weeks before testing, it is likely the testing will show negatives, even if you do have celiac disease. No gluten, no inflammation. No inflammation, no celiac antibodies are produced. The Mayo clinic recommends a pretest gluten challenge of 2 slices of wheat bread daily (or the equivalent) for 6-8 weeks leading up to the blood draw. Regardless of whether you have celiac disease or NCGS the antidote is the same: total avoidance of gluten. Sounds like you may need to double down on your commitment to a gluten-free lifestyle.

[Scott Adams]

Welcome to the forum! I just wanted to also mention, given your long history of symptoms and prior negative celiac blood test, than you indeed may have non-celiac gluten sensitivity, especially if your symptoms improve on a gluten-free diet. If you can get a copy of your old blood test results and share them they could reveal more info, so perhaps you can get those results?

Another thing is that there is a well-known issue called gluten withdrawal when you first go gluten-free, and it's due to gluten's addictive qualities and how it affects your brain, and these take a few weeks before going away. It's your call if you want to eat gluten again to get another celiac test, but if you are feeling better you may want to just stay the course and stay gluten-free.

[Shamogi]

1 hour ago, Scott Adams said:

Welcome to the forum! I just wanted to also mention, given your long history of symptoms and prior negative celiac blood test, than you indeed may have non-celiac gluten sensitivity, especially if your symptoms improve on a gluten-free diet. If you can get a copy of your old blood test results and share them they could reveal more info, so perhaps you can get those results?

Another thing is that there is a well-known issue called gluten withdrawal when you first go gluten-free, and it's due to gluten's addictive qualities and how it affects your brain, and these take a few weeks before going away. It's your call if you want to eat gluten again to get another celiac test, but if you are feeling better you may want to just stay the course and stay gluten-free.

Hi Scott,

thanks for your reply.I shall ask my doctor about the old celiac test results.Its encouraging to hear that I am not alone in this withdrawal process (nor going mad)!I will be looking on the forum for more information.

All the best,

Shamogi

[Shamogi]

4 hours ago, trents said:

Yes, it is certainly possible to have celiac disease without significant gastrointestinal issues, at least until the disease gets pretty advanced and there is significant damage to the villi. We call that "silent celiac disease" and it is not uncommon. But the pain in your gut when you consume wheat products is certainly a classic symptom of celiac disease. Unless your consumption of gluten is regular for 6-8 weeks before testing, it is likely the testing will show negatives, even if you do have celiac disease. No gluten, no inflammation. No inflammation, no celiac antibodies are produced. The Mayo clinic recommends a pretest gluten challenge of 2 slices of wheat bread daily (or the equivalent) for 6-8 weeks leading up to the blood draw. Regardless of whether you have celiac disease or NCGS the antidote is the same: total avoidance of gluten. Sounds like you may need to double down on your commitment to a gluten-free lifestyle.

Thanks for the information.I have been gluten-free five and a half weeks and,apart from withdrawals,am experiencing some significant improvements.The thought of eating bread now sounds horrendous!I think I will go without the test.As you say,at the end of the day whatever the exact diagnosis I am going to have to stick to the gluten-free diet.I am working on healing my gut anyhow and will look into this more on the forum etc.

All the best,

Shamogi