A New Strand To The Puzzle

[CR5442]

Well, yesterday, at the University Herbal Clinic I went for my own consultation with a third year student and the top lecturer, who is basically one of the best herbalists in the county.

I told them about the major gluten intolerance, and a whole history but also about my coconut oil intolerance. The senior Lecturer started nodding knowingly... Anyway, my main issue at the moment is not staying gluten free... with me and the children eating gluten free at home it is pretty easy. My key problem is liver congestion (or a feeling of congestion) and itchiness and sometimes a general overall feeling of tiredness/heaviness and irritability. At the end of the session after blood pressure, tongue analysis etc. the lecturer started to ask me more about where my mother and father came from. They are both of meditteranean descent from one side of their family. My Dad has a lot of the digestive symptoms I have but apparently no itching and clearly no pregnancy problems or pmt!!

He then told me of a condition that can occur in the Liver from conception in people of Mediterranean descent (so hereditary) that means my liver cannot cope with certain chemicals, one set of which is the complex oils in coconut oil. It is a liver processing fault - presumably genetic in origin. He said that whilst they can help my symptoms and through diet changes I can hopefully avoid some of the more challenging chemicals (type diet as well) they can not fix the underlying problem. I suspect there are some of these oils in nuts and other grains too as I certainly feel nauseous with all of these.

I cannot tell you how relieved I am finally to know that there was a source to all my childhood digestive problems (one of which is probably severe intolerance to gluten) and that hopefully soon I will be well on the way to fixing my liver and feeling much much better! I'm waiting for him to send me a research paper he has on this. Next week I go for liver investigations (this will be palpating the liver and surrounding areas to figure out where the damage is) and also for my herbal formula.

Has anyone else found they have some wierd liver condition that has been exacerbated by gluten/certain foods? How did you get a diagnosis?

[Gemini]

Well, yesterday, at the University Herbal Clinic I went for my own consultation with a third year student and the top lecturer, who is basically one of the best herbalists in the county.

I told them about the major gluten intolerance, and a whole history but also about my coconut oil intolerance. The senior Lecturer started nodding knowingly... Anyway, my main issue at the moment is not staying gluten free... with me and the children eating gluten free at home it is pretty easy. My key problem is liver congestion (or a feeling of congestion) and itchiness and sometimes a general overall feeling of tiredness/heaviness and irritability. At the end of the session after blood pressure, tongue analysis etc. the lecturer started to ask me more about where my mother and father came from. They are both of meditteranean descent from one side of their family. My Dad has a lot of the digestive symptoms I have but apparently no itching and clearly no pregnancy problems or pmt!!

He then told me of a condition that can occur in the Liver from conception in people of Mediterranean descent (so hereditary) that means my liver cannot cope with certain chemicals, one set of which is the complex oils in coconut oil. It is a liver processing fault - presumably genetic in origin. He said that whilst they can help my symptoms and through diet changes I can hopefully avoid some of the more challenging chemicals (type diet as well) they can not fix the underlying problem. I suspect there are some of these oils in nuts and other grains too as I certainly feel nauseous with all of these.

I cannot tell you how relieved I am finally to know that there was a source to all my childhood digestive problems (one of which is probably severe intolerance to gluten) and that hopefully soon I will be well on the way to fixing my liver and feeling much much better! I'm waiting for him to send me a research paper he has on this. Next week I go for liver investigations (this will be palpating the liver and surrounding areas to figure out where the damage is) and also for my herbal formula.

Has anyone else found they have some wierd liver condition that has been exacerbated by gluten/certain foods? How did you get a diagnosis?

Caroline.....liver malfunction can result from Celiac Disease...it's one of the most common related issues. My liver enzymes were elevated prior to diagnosis and are fine now that I am gluten-free. There was a lot of inflammation in my liver which has now totally resolved. Sounds like this herbalist is not a doctor and just the step of going gluten-free should eventually make your liver function improve.

Coconut oil is very high in fat...a good fat but a fat none the less. I have trouble to this day digesting higher amounts of fat and coconut oil will bother me if I consume too much. By too much I mean not a whole lot. This is probably why you cannot tolerate coconut oil yourself....it's from the Celiac, not a genetic liver problem. Be careful of people who want you to buy herbs to correct a problem. I am not saying herbs are bad, they have their uses but your liver issues most likely will resolve after a while on the gluten-free diet.

Good luck!

[CR5442]

Caroline.....liver malfunction can result from Celiac Disease...it's one of the most common related issues. My liver enzymes were elevated prior to diagnosis and are fine now that I am gluten-free. There was a lot of inflammation in my liver which has now totally resolved. Sounds like this herbalist is not a doctor and just the step of going gluten-free should eventually make your liver function improve.

Coconut oil is very high in fat...a good fat but a fat none the less. I have trouble to this day digesting higher amounts of fat and coconut oil will bother me if I consume too much. By too much I mean not a whole lot. This is probably why you cannot tolerate coconut oil yourself....it's from the Celiac, not a genetic liver problem. Be careful of people who want you to buy herbs to correct a problem. I am not saying herbs are bad, they have their uses but your liver issues most likely will resolve after a while on the gluten-free diet.

Good luck!

Hi there, thanks for your thoughts! I have to say that I'm pretty sure that my herbal guy... I'm studying Herbalism too under him at the same uni, is more on the mark than anyone else has ever been. My Dad has the same symptoms and so does my daughter and they are not classic Celiac. The itching and liver pain only some people experience, as with cholestasis of pregnancy. I understand what you are saying but I'm certain that there is something going on with our livers as a family collectively. And really he just confirmed this. I told the dietician (NHS) that I itched and she said -that's not normal- even for Celiac... so there had to be something else. Even off the coconut oil and gluten I still have liver pain and itching. That's why the gluten elimination has only partially solved the issue - stomach discomfort and migraine. My Dad has MS and my brother has Aspergers... both autoimmune related. I am the only girl in five generations of the Spanish side of my family to have children... so it goes to say that if this is genetic perhaps the hormone/pregnancy issues have just brought everything to the fore in a way that would not have been noticed with male members of the family. Input from anyone else very very welcome.

As I said, totally appreciate what you are saying!

[ravenwoodglass]

Hi there, thanks for your thoughts! I have to say that I'm pretty sure that my herbal guy... I'm studying Herbalism too under him at the same uni, is more on the mark than anyone else has ever been. My Dad has the same symptoms and so does my daughter and they are not classic Celiac. The itching and liver pain only some people experience, as with cholestasis of pregnancy. I understand what you are saying but I'm certain that there is something going on with our livers as a family collectively. And really he just confirmed this. I told the dietician (NHS) that I itched and she said -that's not normal- even for Celiac... so there had to be something else. Even off the coconut oil and gluten I still have liver pain and itching. That's why the gluten elimination has only partially solved the issue - stomach discomfort and migraine. My Dad has MS and my brother has Aspergers... both autoimmune related. I am the only girl in five generations of the Spanish side of my family to have children... so it goes to say that if this is genetic perhaps the hormone/pregnancy issues have just brought everything to the fore in a way that would not have been noticed with male members of the family. Input from anyone else very very welcome.

As I said, totally appreciate what you are saying!

I have to agree with the previous poster. Itching really is quite common with celiac as it can lead to numerous skin conditions. It can also be a direct cause of elevated liver enzymes. Has your Dad been tested for celiac? When celiac attacks the brain the symptoms can be very similiar to MS and can also include brain lesions very much like MS lesions. Only assume he has MS if he has had a spinal tap where they found the debris that is found with MS. Also Aspergers is not an autoimmune disease. What causes the Autism spectrum is not fully know but it is not autoimmune. If he is celiac he may see some relief from some of the Aspergers issues if he is gluten free.

You may want to give the diet a bit more time to heal you before you do any herbal remedies. This applies especially to tinctures. You will do what you are comfortable with but do know that the body once it has been gluten free for a while and healed does a very good job of healing itself. Make sure you are supplementing any vitamins you are deficient in. Your regular MD can test you to see what you need to supplement.

[Takala]

They're not calling Asperger's or Autism auto immune right now, but I predict there is a good chance in the future that "they" might be.

I had gallstone/gallbladder symptoms but no diagnosis before going gluten free, which resolved my inability to digest fats.

My rule: if something bothers you, don't eat it.

[CR5442]

I have to agree with the previous poster. Itching really is quite common with celiac as it can lead to numerous skin conditions. It can also be a direct cause of elevated liver enzymes. Has your Dad been tested for celiac? When celiac attacks the brain the symptoms can be very similiar to MS and can also include brain lesions very much like MS lesions. Only assume he has MS if he has had a spinal tap where they found the debris that is found with MS. Also Aspergers is not an autoimmune disease. What causes the Autism spectrum is not fully know but it is not autoimmune. If he is celiac he may see some relief from some of the Aspergers issues if he is gluten free.

You may want to give the diet a bit more time to heal you before you do any herbal remedies. This applies especially to tinctures. You will do what you are comfortable with but do know that the body once it has been gluten free for a while and healed does a very good job of healing itself. Make sure you are supplementing any vitamins you are deficient in. Your regular MD can test you to see what you need to supplement.

Hi Ravenwoodglass. Yes, my Dad has had the lumbar puncture and is classic MS. Luckily not in a wheelchair. There is always the potential for other conditions that complicate Celiac though and I think it is always important to have an open mind. I have been on the diet for nearly four months and whilst there are some improvements with some things, other things are getting worse (the itching and liver pain namely). Others on here have discovered thyroid and other conditions. There is nothing to say that my herbalist is wrong... or right. But I would like to think that his 25 years experience isn't all in vain!! I have been on milk thistle on and off since having obstetric cholestasis in my pregnancy and it really does help me. Dandelion I have tried but it is very drying for me individually. Yesterday we tested rosemary as part of our materia medica and this herb seems really good for me. My liver had no problems emptying of bile last night, where as normally it doesn't fully empty. Personally I would much rather take herbs (preferably fresh like the rosemary) than any drugs. For cholestasis they have Urso (an acid of some sort which is meant to help the liver) but what it doesn't do is rebuild liver cells in the way that Silybum Marianum does. There are obviously preferences for all of us!

I will certainly be sticking to the celiac diet as it does make some of my issues much much better... but will keep on searching for the solution to the other problems. Autism I have read an awful lot on and have been speaking to one of the foremost professors on the subject, Tony Atwood, as my husband and my brother have suspected (not officially diagnosed) aspergers. My husband, when his diet is radically modified, shows significant signs of improvement (and even when he still eats gluten) mentally. I am certain as the above poster says that there are elements of autoimmunity to the autistic spectrum... particularly in exacerbation of symptoms.

[ravenwoodglass]

Hi Ravenwoodglass. Yes, my Dad has had the lumbar puncture and is classic MS. Luckily not in a wheelchair. There is always the potential for other conditions that complicate Celiac though and I think it is always important to have an open mind. I have been on the diet for nearly four months and whilst there are some improvements with some things, other things are getting worse (the itching and liver pain namely). Others on here have discovered thyroid and other conditions. There is nothing to say that my herbalist is wrong... or right. But I would like to think that his 25 years experience isn't all in vain!! I have been on milk thistle on and off since having obstetric cholestasis in my pregnancy and it really does help me. Dandelion I have tried but it is very drying for me individually. Yesterday we tested rosemary as part of our materia medica and this herb seems really good for me. My liver had no problems emptying of bile last night, where as normally it doesn't fully empty. Personally I would much rather take herbs (preferably fresh like the rosemary) than any drugs. For cholestasis they have Urso (an acid of some sort which is meant to help the liver) but what it doesn't do is rebuild liver cells in the way that Silybum Marianum does. There are obviously preferences for all of us!

I will certainly be sticking to the celiac diet as it does make some of my issues much much better... but will keep on searching for the solution to the other problems. Autism I have read an awful lot on and have been speaking to one of the foremost professors on the subject, Tony Atwood, as my husband and my brother have suspected (not officially diagnosed) aspergers. My husband, when his diet is radically modified, shows significant signs of improvement (and even when he still eats gluten) mentally. I am certain as the above poster says that there are elements of autoimmunity to the autistic spectrum... particularly in exacerbation of symptoms.

Not glad to hear your Dad has MS but I am glad to hear he wasn't just diagnosed based on symptoms. There are folks that have been and it has turned out to be ataxia rather than MS.

Glad you seem to be finding stuff that is working for you and I hope you continue to improve. My own experience with a naturopathic doctor was awful he either soyed or glutened me with every very expensive formula he prescribed and had the attitude that a 'little bit' of gluten wouldn't hurt. There are some who really do know what they are doing and when they do they can be very helpful.

[lovegrov]

Umm, what does "liver congestion" feel like?

richard

[CR5442]

Not glad to hear your Dad has MS but I am glad to hear he wasn't just diagnosed based on symptoms. There are folks that have been and it has turned out to be ataxia rather than MS.

Glad you seem to be finding stuff that is working for you and I hope you continue to improve. My own experience with a naturopathic doctor was awful he either soyed or glutened me with every very expensive formula he prescribed and had the attitude that a 'little bit' of gluten wouldn't hurt. There are some who really do know what they are doing and when they do they can be very helpful.

Yes, I heard that in another post you made. I can really understand your reticence! I had a particularly useless Nutritionist who never explained anything to me and just went, oh that's odd, when I told her about the itching during my first pregnancy. I feel much safer with the Uni clinic as it has the best reputation in the country (UK) and also we are undergoing statutory regulation of herbalists to bring us in line with the same regulations that govern Doctors and other NHS practitioners. Which can only be a good thing when it comes to being prescribed sometimes very powerful herbs! I suppose it also helps that I know exactly where the tinctures and powders come from at the clinic and what goes in to them! Thanks for your concern. My poor Dad has had MS since he was 21. He was in the RAF, flew on exercise to the middle east, came to get out of the plane and couldn't move. Very scary. My friend's mum also has bad MS (she is about 50 in a wheelchair) and it is turning in to myelinitis in her neck, so now she is finding it hard to swallow and breathe!

[CR5442]

Umm, what does "liver congestion" feel like?

richard

I suppose where you wouldn't notice or feel your liver at all, with liver congestion (or basically where it is struggling from excess toxins or inability to process them) the liver can swell or become inflammed slightly, as can the gallbladder. You notice the position of the liver more in this circumstance and sometimes that will lead to discomfort and distention with some pain, also referred at times to the back and to the right shoulder. Does that make sense?

[Skylark]

You need to get a lot more details from this herbalist on the so-called liver disorder. He should be able to provide you with enough information to go research it on your own.

I am skeptical because inborn errors in fatty acid metabolism have severe and sometimes fatal symptoms, not a little "liver congestion." The most common metabolic defect that might interfere with coconut oil metabolism is MCAD deficiency, and there are diagnostic tests for it. It's a fairly severe disorder and unlikely you have it, although it is a remote possibility your father has it and you are a carrier.

If you are having referred liver pain, you should be tested for hepatitis C immediately.

[CR5442]

You need to get a lot more details from this herbalist on the so-called liver disorder. He should be able to provide you with enough information to go research it on your own.

I am skeptical because inborn errors in fatty acid metabolism have severe and sometimes fatal symptoms, not a little "liver congestion." The most common metabolic defect that might interfere with coconut oil metabolism is MCAD deficiency, and there are diagnostic tests for it. It's a fairly severe disorder and unlikely you have it, although it is a remote possibility your father has it and you are a carrier.

If you are having referred liver pain, you should be tested for hepatitis C immediately.

Here in the UK it is obligatory to have Hep B/C, HIV and other serious disorder tests when pregnant. I have none of these from both my tests and have had liver pain since I was a teen. There is no pathology on my liver at all. All the bloods are normal... which is why this is all so odd. My lecturer is looking out the paper on the disorder for me for next Monday... though I'm sure he is aware that it may not be this. If the liver pathology showed anything at all it would be a lot easier to diagnose. But really useful info above on MCAD Skylark. Thanks, I'll look it up. He said it was Chemicals, not particularly fatty acids. Does Coconut oil have anything other than fatty acids?!

[CR5442]

Here in the UK it is obligatory to have Hep B/C, HIV and other serious disorder tests when pregnant. I have none of these from both my tests and have had liver pain since I was a teen. There is no pathology on my liver at all. All the bloods are normal... which is why this is all so odd. My lecturer is looking out the paper on the disorder for me for next Monday... though I'm sure he is aware that it may not be this. If the liver pathology showed anything at all it would be a lot easier to diagnose. But really useful info above on MCAD Skylark. Thanks, I'll look it up. He said it was Chemicals, not particularly fatty acids. Does Coconut oil have anything other than fatty acids?!

Skylark, had a quick look at this condition and i'm certain this is not what we have in our family. There is def. something inherited though as my Dad and I have the same symptoms even on completely different diets. He said something about meditteranean people... ring any bells?

[CR5442]

Here's a link showing all the tests in the UK done automatically for pregnant mothers. Open Original Shared Link As i said I have had digestive problems since I was 2.5 in hospital with malnutrition (may have been attributable at that point to gluten intolerance) and liver pains (much more vague earlier on) for as long as I can remember since beginning my menstrual cycle.

[Skylark]

Here in the UK it is obligatory to have Hep B/C, HIV and other serious disorder tests when pregnant. I have none of these from both my tests and have had liver pain since I was a teen. There is no pathology on my liver at all. All the bloods are normal... which is why this is all so odd. My lecturer is looking out the paper on the disorder for me for next Monday... though I'm sure he is aware that it may not be this. If the liver pathology showed anything at all it would be a lot easier to diagnose. But really useful info above on MCAD Skylark. Thanks, I'll look it up. He said it was Chemicals, not particularly fatty acids. Does Coconut oil have anything other than fatty acids?!

I'm glad MCAD deficiency doesn't fit! Also glad you have no signs of hepatitis.

If it's specific to chemicals, he may be talking about cytochrome P450 polymorphisms. The P450 system is your hepatic "detox" system for chemicals and drugs. There are a LOT of differences in P450 enzymes between individuals, and among other things P450 differences can change the way people metabolize certain drugs. I looked for connections between P450 and coconut and didn't track anything down, I could have missed it. If he gives you a peer-reviewed paper or something we can look up, please post the link or reference. I'm sure a lot of us would be curious to see.