Very high liver enzymes

[pasqualeb]

Has anyone had very high liver enzyme readings and has Celiac.

thank you, Pasquale 

[trents]

Elevated liver enzymes is one of the established symptoms of celiac disease. In fact, this is what led to my diagnosis of celiac disease about 20 years ago. They were just moderately high in my case and returned to normal levels within a few months of going gluten free.

[pasqualeb]

Thank you for your input. We're you taking any steroids to bring the numbers down?  Thanks,Pasquale

[trents]

No, I did not take steriods. Just eating gluten-free was enough to bring the enzyme levels down to normal. Have you been officially diagnosed with celiac disease?

[pasqualeb]

Yes, I was diagnosed in 2002, I was asking for my son who has very high enzymes and he also has Celiac. His doctor put him on regiment or cortisone as well as  being gluten-free.....

[trents]

46 minutes ago, pasqualeb said:

Yes, I was diagnosed in 2002, I was asking for my son who has very high enzymes and he also has Celiac. His doctor put him on regiment or cortisone as well as  being gluten-free.....

Sounds like a good plan to me. Cortisone is practically a miracle drug when not overused. It's important to get that liver inflammation under control. The liver has remarkable recuperative ability but not without limits. Has he been checked for fatty liver disease?

[pasqualeb]

5 minutes ago, trents said:

Sounds like a good plan to me. Cortisone is practically a miracle drug when not overused. It's important to get that liver inflammation under control. The liver has remarkable recuperative ability but not without limits. Has he been checked for fatty liver disease?

Okay, thanks again 

[pasqualeb]

The response I received was helpful, essentially felt better that this was not unique to our case. A little peace of mind is  this gave our family and that’s 

always welcome.  Pasquale 

[trents]

About 1 out of 5 celiacs experience elevated liver enzymes.

[Wheatwacked]

I was on prednisone for gout pain. It took 30 mg a day. As a secondary effect it took away my fibromyagia that nothing else touched so was continued on it. Once I started gluten free my dose came down to 5 or 10 a day. Unfortunately the two years on prednisone controlling the pains caused by gluten shut down my adrenal cortex causing secondary adrenal insufficiency so I need to continue it as maintenance. Short course of prednisone is good. My brother also has taken it for gout twice. A friend of mine was diagnosed with 6 months to live from liver cancer. On prednisone she died 7 years later. great stuff but short term is best.

Make sure he is eating enough choline. Choline can be a cause of liver and gall bladder issues. 3 ounces of beef liver or 3 eggs or  a 20 oz top round beef steak are the best sources. Or 10 cups a day of cooked brocolli for the minimum RDA.

 Choline Fact Sheet for Health Professionals "Most people in the United States consume less than the AI for choline. Choline deficiency can cause muscle damage, liver damage, and nonalcoholic fatty liver disease (NAFLD or hepatosteatosis) Choline, especially phosphatidylcholine, is essential for transporting lipids from the liver [1]. Therefore, in choline deficiency, fat accumulates in the liver, which can result in NAFLD ...A pilot study in 15 adults on TPN found that NAFLD resolved completely in all patients who received their usual TPN regimen with an additional 2 g choline and in none of the patients who received their usual TPN regimen only

Could we be overlooking a potential choline crisis in the United Kingdom? "the amount produced endogenously (in the liver) is not sufficient to meet human requirements,6 it therefore needs to be obtained from dietary and supplement sources. Physiologically, choline is critical for a number of functions across the life cycle which include wide-ranging roles in human metabolism from neurotransmitter synthesis to cell structure and methylation, with choline deficiency being linked to liver disease, offspring cognitive function and potential neurological disorders." 

 

[pasqualeb]

18 hours ago, Wheatwacked said:

I was on prednisone for gout pain. It took 30 mg a day. As a secondary effect it took away my fibromyagia that nothing else touched so was continued on it. Once I started gluten free my dose came down to 5 or 10 a day. Unfortunately the two years on prednisone controlling the pains caused by gluten shut down my adrenal cortex causing secondary adrenal insufficiency so I need to continue it as maintenance. Short course of prednisone is good. My brother also has taken it for gout twice. A friend of mine was diagnosed with 6 months to live from liver cancer. On prednisone she died 7 years later. great stuff but short term is best.

Make sure he is eating enough choline. Choline can be a cause of liver and gall bladder issues. 3 ounces of beef liver or 3 eggs or  a 20 oz top round beef steak are the best sources. Or 10 cups a day of cooked brocolli for the minimum RDA.

 Choline Fact Sheet for Health Professionals "Most people in the United States consume less than the AI for choline. Choline deficiency can cause muscle damage, liver damage, and nonalcoholic fatty liver disease (NAFLD or hepatosteatosis) Choline, especially phosphatidylcholine, is essential for transporting lipids from the liver [1]. Therefore, in choline deficiency, fat accumulates in the liver, which can result in NAFLD ...A pilot study in 15 adults on TPN found that NAFLD resolved completely in all patients who received their usual TPN regimen with an additional 2 g choline and in none of the patients who received their usual TPN regimen only

Could we be overlooking a potential choline crisis in the United Kingdom? "the amount produced endogenously (in the liver) is not sufficient to meet human requirements,6 it therefore needs to be obtained from dietary and supplement sources. Physiologically, choline is critical for a number of functions across the life cycle which include wide-ranging roles in human metabolism from neurotransmitter synthesis to cell structure and methylation, with choline deficiency being linked to liver disease, offspring cognitive function and potential neurological disorders." 

 

Many thanks, good information 

pasquale

[Havnsumfn]

I have to reply to this. My entire family, as we age to our 30s-50s, have NASH. I have lost several family members to gastrointestinal bleeds. We are always assumed by our doctors to be alcoholics, or sometimes, just overweight and eating too much fat, not enough exercise. My family, is very active, and most are athletes or in military. I was an athlete, and do not drink alcohol. My mother developed cirrhosis, as did my younger brother, uncle, cousin, and I myself was starting to. Eliminating gluten, quickly lowered our enzymes.  My enzymes always are found to spike, right after I get glutened and my symptoms last for several weeks. My nephews, and myself, used to have strage body odors, and I have smelled this on patients I work with who have cirrhosis, and are given usually less than a year to live. They are jaundiced. After elimination of gluten, we have had this odor finally abate. I have had it return, when I have been seriously glutened. It is terrible, and often used to air out my home, even in the winter. Now, after 5 years gluten free, it is a symptom I have often forgotten about!

Just now, Havnsumfn said:

I have to reply to this. My entire family, as we age to our 30s-50s, have NASH. I have lost several family members to gastrointestinal bleeds. We are always assumed by our doctors to be alcoholics, or sometimes, just overweight and eating too much fat, not enough exercise. My family, is very active, and most are athletes or in military. I was an athlete, and do not drink alcohol. My mother developed cirrhosis, as did my younger brother, uncle, cousin, and I myself was starting to. Eliminating gluten, quickly lowered our enzymes.  My enzymes always are found to spike, right after I get glutened and my symptoms last for several weeks. My nephews, and myself, used to have strage body odors, and I have smelled this on patients I work with who have cirrhosis, and are given usually less than a year to live. They are jaundiced. After elimination of gluten, we have had this odor finally abate. I have had it return, when I have been seriously glutened. It is terrible, and often used to air out my home, even in the winter. Now, after 5 years gluten free, it is a symptom I have often forgotten about! My family is high risk, as I was found to have 2 celiac genes, and most my family members all have symptoms, and many autoimmune diseases. 

 

[Wheatwacked]

You mention body odor. "fishy body odor" is a reported side effect of consuming around 7 grams of choline a day. The safe tolerable limit is therefore set at 3.5 grams a day. I wonder if it has anything to do with you homocysteine level?

"In summary, evidence to date suggests cholesterol and TG dysregulation, along with the phosphatidylcholine-to-phosphatidylethanolamine ratio of various hepatic membranes, could be the key to the changes that are seen with choline/phosphatidylcholine" deficiency. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4717871/

[Havnsumfn]

On 4/7/2023 at 1:00 AM, Wheatwacked said:

You mention body odor. "fishy body odor" is a reported side effect of consuming around 7 grams of choline a day. The safe tolerable limit is therefore set at 3.5 grams a day. I wonder if it has anything to do with you homocysteine level?

"In summary, evidence to date suggests cholesterol and TG dysregulation, along with the phosphatidylcholine-to-phosphatidylethanolamine ratio of various hepatic membranes, could be the key to the changes that are seen with choline/phosphatidylcholine" deficiency. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4717871/

Not, a "fishy body odor". It is referred to as "fetor hepaticus". I have worked in Healthcare, about 29 years. I have worked with countless patients with end stage liver disease, most who died within 6 months to a year of me working with them. They were jaundiced. I couldn't understand, how my nephews, myself, and even my (now deceased) mother and brother, had this smell, until after several of my family members were eventually diagnosed with cirrhosis, NASH, or celiac disease. We all learned of our gluten intolerances, later. After eliminating the gluten, the odor faded away. I have been glutened a few times, and the odor returned for only a couple of days, including greasy, pale colored stools when I get glutened. This does not happen, when my glucose levels are high, unless they are elevated for a prolonged period of several days. I don't let myself get that high, it feels terrible. My mother, experiencing this when her ammonia levels were high, and she had to have lactulose to clear the levels, and her cognitive symptoms. 

1 minute ago, Havnsumfn said:

Not, a "fishy body odor". It is referred to as "fetor hepaticus". I have worked in Healthcare, about 29 years. I have worked with countless patients with end stage liver disease, most who died within 6 months to a year of me working with them. They were jaundiced. I couldn't understand, how my nephews, myself, and even my (now deceased) mother and brother, had this smell, until after several of my family members were eventually diagnosed with cirrhosis, NASH, or celiac disease. We all learned of our gluten intolerances, later. After eliminating the gluten, the odor faded away. I have been glutened a few times, and the odor returned for only a couple of days, including greasy, pale colored and loose stools when I get glutened. This does not happen, when my glucose levels are high, unless they are elevated for a prolonged period of several days. I don't let myself get that high, it feels terrible. My mother, experiencing this when her ammonia levels were high, and she had to have lactulose to clear the levels, and her cognitive symptoms. 

 

[Guest 648]

On 3/13/2023 at 11:10 AM, trents said:

Elevated liver enzymes is one of the established symptoms of celiac disease. In fact, this is what led to my diagnosis of celiac disease about 20 years ago. They were just moderately high in my case and returned to normal levels within a few months of going gluten free.

May I ask?  How long were your liver enzymes elevated for before you were told of your celiac dx?  I mean like were they elevated for a few months, or years or what?

 

[trents]

Seven years. I first became aware of it when I went to donate blood at a Red Cross bloodmobile in about 1987 and they sent me notice that they couldn't use my blood because of the elevated liver enzymes because it suggested hepatitis. I made an appointment with my primary care doc to check that out and I did not have hepatitis. At the same time my iron levels were slowly dropping and as was my albumin and total protein. I had occasional diarrhea and fatty stools but I didn't think much of it. I really wasn't experiencing abdominal discomfort or, if I was, it was minimal and I didn't get my attention. I worked in a healthcare environment so as part of my benefits I got a complete CBC and CMP every year which made it easy to track the lab values that were getting slowly more out of norm with time. My primary care doc check for all types of hepatitis and some other disorders but never checked for celiac disease. Finally, he said to me, "I don't know why your liver enzymes are elevated. Maybe that's just the way you are." Well, his answer was ridiculous of course so I took thing into my own hands and made an appointment with a GI doc. Write away he did testing for celiac disease and the rest is history. Within a few months of going gluten-free my liver enzymes were normal. But by that time bone scans showed osteopenia. Sometimes I look back and get angry at my primary care doc who has since moved out of the area but this was back in the late 1980's and mid 1990's when celiac disease was not on anyone's radar. I should also add that my albumin and total protein remain borderline low and I'm not sure why that is or if there is a connection between that and the years of elevated liver enzymes. Was some irreversible damage done to my liver? Docs can't give me an answer on that one but I do know this is not unusual in the celiac community.

Edited May 28, 2023 by trents

[Guest 648]

14 hours ago, trents said:

Seven years. I first became aware of it when I went to donate blood at a Red Cross bloodmobile in about 1987 and they sent me notice that they couldn't use my blood because of the elevated liver enzymes because it suggested hepatitis. I made an appointment with my primary care doc to check that out and I did not have hepatitis. At the same time my iron levels were slowly dropping and as was my albumin and total protein. I had occasional diarrhea and fatty stools but I didn't think much of it. I really wasn't experiencing abdominal discomfort or, if I was, it was minimal and I didn't get my attention. I worked in a healthcare environment so as part of my benefits I got a complete CBC and CMP every year which made it easy to track the lab values that were getting slowly more out of norm with time. My primary care doc check for all types of hepatitis and some other disorders but never checked for celiac disease. Finally, he said to me, "I don't know why your liver enzymes are elevated. Maybe that's just the way you are." Well, his answer was ridiculous of course so I took thing into my own hands and made an appointment with a GI doc. Write away he did testing for celiac disease and the rest is history. Within a few months of going gluten-free my liver enzymes were normal. But by that time bone scans showed osteopenia. Sometimes I look back and get angry at my primary care doc who has since moved out of the area but this was back in the late 1980's and mid 1990's when celiac disease was not on anyone's radar. I should also add that my albumin and total protein remain borderline low and I'm not sure why that is or if there is a connection between that and the years of elevated liver enzymes. Was some irreversible damage done to my liver? Docs can't give me an answer on that one but I do know this is not unusual in the celiac community.

Thanks for that story trents.  I am kind of the opposite of that situation.  I got an appt with a GI doc for celiace investigation.  She scheduled an endoscope in July(they are really backed up).  Then she says I notice some of your liver enzymes are elevated.  I said, Yes I know.  They have been mildily elevated for over 20 year and that I had an ultrasound that confirmed Non-Alcoholic Fatty Liver.  She said she'd like to do some blood work.  I said thats fine.  After about 20 labs about 12 were elevated(mildlly).  She said Celiac can cause this.  She wants me to have a liver biopsy.  I guess I'll do it but most of the abnormal blood tests are like that because I have other AI diseases(Lupus, Sjogrens).  They will show up each positive each time no matter what because my AI diseases are always active.  The only test, in my opinion, that indicated Autoimmune Hepatits was a Smooth Muscle Antiboy test...and that one the result was "weak positive"  I don't have any symptoms, well I do but my sysmptoms can be due to Celiac, Lupus, SJS or a number of other issues.  I'm not looking forward to a liver biopsy.  I have a problem going to appointments/procedures like this because they don't want me to drive and want someone 18 years or older with me ALL the time.  I have no immediately family or friends I could ask.  My wife does not drive and I'd prefer he to stay home because she has issues too and its hard for her to go out.  So I already told this doctor that if I cannot find a driver and companion I would have to cancel the biopsies.  Not what I want but I have no choice.

Anywho, good luck...

[trents]

Did your testing demonstrate that, in fact, you do have celiac disease?

12 minutes ago, 648 said:

Thanks for that story trents.  I am kind of the opposite of that situation.  I got an appt with a GI doc for celiace investigation.  She scheduled an endoscope in July(they are really backed up).  Then she says I notice some of your liver enzymes are elevated.  I said, Yes I know.  They have been mildily elevated for over 20 year and that I had an ultrasound that confirmed Non-Alcoholic Fatty Liver.  She said she'd like to do some blood work.  I said thats fine.  After about 20 labs about 12 were elevated(mildlly).  She said Celiac can cause this.  She wants me to have a liver biopsy.  I guess I'll do it but most of the abnormal blood tests are like that because I have other AI diseases(Lupus, Sjogrens).  They will show up each positive each time no matter what because my AI diseases are always active.  The only test, in my opinion, that indicated Autoimmune Hepatits was a Smooth Muscle Antiboy test...and that one the result was "weak positive"  I don't have any symptoms, well I do but my sysmptoms can be due to Celiac, Lupus, SJS or a number of other issues.  I'm not looking forward to a liver biopsy.  I have a problem going to appointments/procedures like this because they don't want me to drive and want someone 18 years or older with me ALL the time.  I have no immediately family or friends I could ask.  My wife does not drive and I'd prefer he to stay home because she has issues too and its hard for her to go out.  So I already told this doctor that if I cannot find a driver and companion I would have to cancel the biopsies.  Not what I want but I have no choice.

Anywho, good luck...

Did your testing indicate that, in fact, you do have celiac disease?

[trents]

Actually, let me correct myself. It was not seven years between first evidence of elevated liver enzymes and celiac diagnosis. But it was about seven years after I began seeking answers in earnest.

[Guest 648]

Just now, trents said:

Did your testing demonstrate that, in fact, you do have celiac disease?

Of the serum tests taken only 1 showed positive and that is:

Gliadin IgA Antibody  MY VALUE:  168 U/mL  Standard Range<15 U/mL  Flag H
Gliadin Ab IgA Interpretation  MY VALUE: Positive  Standard Range = Negative
Flag A

The Others:

---

Endomysial Antibody IgA:  NEGATIVE

---

G6PD Qualitative:   NORMAL

---

IgA MY VALUE:  352 mg/dL  Standard Range  40 - 350 mg/dL Flag H

---

TTGA MY VALUE: 8 U/mL Standard Range<15 U/mL

TTGA Interp MY VALUE Negative  NEGATIVE  Standard Range

---

TTGG MY VALUE  <1 U/mL  Standard Range<15 U/mL
TTGG Interp MY VALUE Negative  Standard Range

--

And yes, I was eating >2 slices of wheat bread and other gluten for months before the test.

I also had 2 punch biopsies of my rash and it was confirmed DH. (This is the main reason for me to see a GI doc)

 

 

 

 

 

 

[Wheatwacked]

How much choline is needed to reverse fatty liver disease?

"Choline is essential for healthy liver function, and research links choline deficiency to fatty liver disease. There is no evidence to suggest that choline can reverse fatty liver disease but it may help to prevent the condition."

Aside from the fact that only 10% eating the western diet (low eggs, liver, beeF) in a misguided attempt to reduce cholesteral, choline is absorbed in the small intestine and so a double whammy, not eating enough as a member of the western cultrure and poor absorbtion due to villi damage from Celiac antibodies.

We need either 3 eggs, or a 12 ounce steak, or 10 cups of cooked brocolli or a combination of foods, to just barely meet the minimum AI.   Patients on parenteral feedings in the US are dying because there is no choline product available to add to the parenteral solution. It is however available in Europe. 

Phoshpatidyl choline makes up 80% of the mitochondia membrane (home of the Krebbs Cycle) so can affect energy levels and it is needed for acetylcholine for nerve transmission in the brain so can cause poor memory and brain fog.  The Safe Tolerable Upper Limit is 3500 mg but the side effects of low blood pressure and fishy odor don't kick in until around 7000 mg.  They set the ul at one half the level of too much to "protect us from ourselves". ???  

     National Institutes of Health: Choline Fact Sheet for Health Professionals     "Adequate Intake (AI): Intake at this level is assumed to ensure nutritional adequacy... when evidence is insufficient to develop an RDA.the FNB established AIs for all ages that are based on the prevention of liver damage as measured by serum alanine aminostransferase levels [2]. The amount of choline that individuals need is influenced by the amount of methionine, betaine, and folate in the diet; gender; pregnancy; lactation; stage of development; ability to produce choline endogenously; and genetic mutations that affect choline needs? 

Edited May 28, 2023 by Wheatwacked
typos

[trents]

29 minutes ago, 648 said:

Of the serum tests taken only 1 showed positive and that is:

Gliadin IgA Antibody  MY VALUE:  168 U/mL  Standard Range<15 U/mL  Flag H
Gliadin Ab IgA Interpretation  MY VALUE: Positive  Standard Range = Negative
Flag A

The Others:

---

Endomysial Antibody IgA:  NEGATIVE

---

G6PD Qualitative:   NORMAL

---

IgA MY VALUE:  352 mg/dL  Standard Range  40 - 350 mg/dL Flag H

---

TTGA MY VALUE: 8 U/mL Standard Range<15 U/mL

TTGA Interp MY VALUE Negative  NEGATIVE  Standard Range

---

TTGG MY VALUE  <1 U/mL  Standard Range<15 U/mL
TTGG Interp MY VALUE Negative  Standard Range

--

And yes, I was eating >2 slices of wheat bread and other gluten for months before the test.

I also had 2 punch biopsies of my rash and it was confirmed DH. (This is the main reason for me to see a GI doc)

 

 

 

 

 

 

Yours is a very interesting case. Normally, having DH is proof positive that one has celiac disease. Yet, your only positive for celiac disease is the IGG and that is a secondary, less specific test for celiac disease that could be caused by other things. I would have expected a positive for tTG-IGA. We do know that a small percentage of those who have DH do not have gut manifestations of celiac disease. I wonder if you are one of them.

Are you eating gluten free now?

[Wheatwacked]

And again: The left hand knoweth not what the right hand is doth do.  That right there should be enough for a doctor to recommend GFD for life with out the need for you to suffer while waiting for endless testing.

1 hour ago, 648 said:

I also had 2 punch biopsies of my rash and it was confirmed DH.

 

Edited May 28, 2023 by Wheatwacked

[Guest 648]

On 5/28/2023 at 11:33 AM, trents said:

Yours is a very interesting case. Normally, having DH is proof positive that one has celiac disease. Yet, your only positive for celiac disease is the IGG and that is a secondary, less specific test for celiac disease that could be caused by other things. I would have expected a positive for tTG-IGA. We do know that a small percentage of those who have DH do not have gut manifestations of celiac disease. I wonder if you are one of them.

Are you eating gluten free now?

I do not have gut manifestations of celiac disease.  I eat gluten everyday beginning with 2 pieces of wheat toast in the morning.  If it wasn't by chance that my rheumatologist sent me to the dermatologist because of my new rash I would never know.  I have other AI diseases lupus(cutaneous and systemic, Sjogrens) so many of  my AI antibodies are always going to show positive.  I get an endoscope/biopsy in late July.  Until then and until told otherwise I will continue eating gluten(one reason is for celiac testing).  I hope I can follow a gluten-free diet if required.  It just seems so hard to comply with without reading or looking up everything.

FYI.  My dermatologist told me that there have been rare cases of DH in lupus patients who are not celiac. 

 

Best of luck!

 

[trents]

5 minutes ago, 648 said:

FYI.  My dermatologist told me that there have been rare cases of DH in lupus patients who are not celiac. 

 

Best of luck!

 

I suppose we could quibble over terminology but one way to understand DH is that it is an epidermal expression of celiac disease in addition to or in place of (in a small percentage of cases) the gut manifestation. So, what I am saying is that the dermatologist's understanding of celiac disease may be too narrow. In other words, a small percentage of people with celiac disease have no gut manifestation but they still have celiac disease. But the more important question in your case is, is the DH in response to gluten ingestion? Also, don't be surprised if the biopsy shows damage to your small bowel villi even though you seem to be asymptomatic.