26 years old and feel like an 80 year old

[Cramper]

I'm 26, 183cm and 85KG, male and living in the UK which unfortunately means I have to advocate for my own care as I'm lucky to get ten minutes with a Doctor. I am sober for 2 years, vape only and do not take any drugs or supplements prescribed or otherwise and have no medical conditions but I am diagnosed with ADHD.

I've been suffering for the last 5 years with my body, My symptoms seem to come in waves that last a few days at a time but are getting much worse and consist of;

• Bloating (I look pregnant and have to undo my belt)
• Diarrhea/Constipation - sometimes both at once
• Stomach cramps
• Flatulation (which is foul smelling and sometimes productive with mucus)
• Low mood, fatigue and terrible brain fog
• Weak muscles and slow recovery time from exercise
• Loss of co-ordination - feeling unsteady on my feet

More recently I have started to experience migraines with aura, which end almost instantly after vomiting/diarrhea and always seem to occur during these "waves".

I first started noticing these problem after eating Pizza, my stomach would bloat and cramp almost immediately and I'd be ill for days after. Initially I thought it could be the cheese so cut out lactose and even tried making my own pizzas from scratch until one time the cooking process put me to bed with my first ever migraine.

I've since cut out alcohol and been sober for 2 years but nothing is working to make me feel better. 

I went to the Doctors recently and had some blood tests, everything is in range apart from two tests for liver function which were described as borderline.

My TTG ABS (IGA) result was 1.9CU [0.0 - 19.9] which is the test for Celiac disease as far as I am aware

And my abnormal results (described as borderline by my Doctor) were

• AST Serum level 36 u/L [0.0 - 35.0]
• Serum Alanine aminotransferase level 80 u/L [0.0 - 50]

I just can't go on like this for much longer. I'm 26 years old and feel like I'm 80, I am scared and embarrassed to go to the toilet as constipated diarrhea is perhaps the most disgusting thing I've ever had to deal with and the only way to get it out is to use the shower water pressure as an enema. I am fatigued all the time and can't do much exercise as the recovery period with aching muscles and soreness is so lengthy. 

I guess I am here looking for advice on if Celiac diagnosis is worth pursuing in your opinion. The test above seems to be negative but I can't find any other answer for my problems which are getting worse and I really relate to being "glutened" - while I can't identify my trigger when these symptoms come on it feels like I have been poisoned.

 

[T burd]

1 hour ago, Cramper said:

I'm 26, 183cm and 85KG, male and living in the UK which unfortunately means I have to advocate for my own care as I'm lucky to get ten minutes with a Doctor. I am sober for 2 years, vape only and do not take any drugs or supplements prescribed or otherwise and have no medical conditions but I am diagnosed with ADHD.

I've been suffering for the last 5 years with my body, My symptoms seem to come in waves that last a few days at a time but are getting much worse and consist of;

• Bloating (I look pregnant and have to undo my belt)
• Diarrhea/Constipation - sometimes both at once
• Stomach cramps
• Flatulation (which is foul smelling and sometimes productive with mucus)
• Low mood, fatigue and terrible brain fog
• Weak muscles and slow recovery time from exercise
• Loss of co-ordination - feeling unsteady on my feet

More recently I have started to experience migraines with aura, which end almost instantly after vomiting/diarrhea and always seem to occur during these "waves".

I first started noticing these problem after eating Pizza, my stomach would bloat and cramp almost immediately and I'd be ill for days after. Initially I thought it could be the cheese so cut out lactose and even tried making my own pizzas from scratch until one time the cooking process put me to bed with my first ever migraine.

I've since cut out alcohol and been sober for 2 years but nothing is working to make me feel better. 

I went to the Doctors recently and had some blood tests, everything is in range apart from two tests for liver function which were described as borderline.

My TTG ABS (IGA) result was 1.9CU [0.0 - 19.9] which is the test for Celiac disease as far as I am aware

And my abnormal results (described as borderline by my Doctor) were

• AST Serum level 36 u/L [0.0 - 35.0]
• Serum Alanine aminotransferase level 80 u/L [0.0 - 50]

I just can't go on like this for much longer. I'm 26 years old and feel like I'm 80, I am scared and embarrassed to go to the toilet as constipated diarrhea is perhaps the most disgusting thing I've ever had to deal with and the only way to get it out is to use the shower water pressure as an enema. I am fatigued all the time and can't do much exercise as the recovery period with aching muscles and soreness is so lengthy. 

I guess I am here looking for advice on if Celiac diagnosis is worth pursuing in your opinion. The test above seems to be negative but I can't find any other answer for my problems which are getting worse and I really relate to being "glutened" - while I can't identify my trigger when these symptoms come on it feels like I have been poisoned.

 

It sounds like you have a bad case of celiac. I’m sure somebody else will chime in but I don’t think they gave you all the test if that was your only test. Did they give you any other labs? 

[Cramper]

11 minutes ago, T burd said:

It sounds like you have a bad case of celiac. I’m sure somebody else will chime in but I don’t think they gave you all the test if that was your only test. Did they give you any other labs? 

Hi T Burd,

There are all the tests I had 6 weeks ago. 

• Full Blood Count
• Haemoglobin Concentration
• Total White Blood Count
• Platelet Count
• Red Blood Cell Count
• Haematocrit
• Urea and electrolytes
• Serum Sodium level
• Serum Potassium level
• Serum urea level
• Serum Creatinine level
• Thyroid Function Test
• Serum TSH level
• Differential White Blood Cell Count
• Serum ferritin level
• Haemogloblin A1c Level
• Liver Function Tests
• Serum Alkaline phosphatase level
• Serum Alanine aminotransferase level
• Serum total bilburin level
• Serum albumin level
• Anti tissue transglutaminase level
• AST Serum level

Everything was within normal range apart from the Liver tests, two of which came back slightly above normal

• Ast Serum Level 36 u/L [0.0 - 35.0] Above High Reference Limit
• Serum alanine aminotransferase 80 iu/L [0-50]

There was also a note that said

TTG ABS (IGA) < 1.9 CU [0.0 - 19.9]; Negative results make Ceoliac Disease unlikely if individuals have been on a diet containing adequate gluten for 6 weeks prior to test. However if symptoms persist suggest check immunoglobulins. 

Today my Doctor had me back for the following blood tests (to repeat the Liver tests and rule out Hepatitis)

• Hepatitis B Surface Antigen
• Hep C Antibody (HCV)
• Autoimmune Liver Screen
• Immunoglobins & Electrophesis
• Liver Function Tests (LFT)

Ever since he saw these "Borderline" Liver results he has totally ignored all my other issues and is only focused on the Liver, but the other symptoms  have been around a lot longer than these Liver issues and I had a blood test for something else that included these Liver tests 3 years ago which proves this.

Unfortunately in the UK right now the healthcare system is not in the best shape and the way it works at my GP is a receptionist reviews the results and if anything is reported as out of range a very stressed and busy doctor rings you for 5 minutes and reviews them on the phone with you, paying little mind to the reason you had them in the first place.

 

[Rogol72]

3 hours ago, Cramper said:

I'm 26, 183cm and 85KG, male and living in the UK which unfortunately means I have to advocate for my own care as I'm lucky to get ten minutes with a Doctor. I am sober for 2 years, vape only and do not take any drugs or supplements prescribed or otherwise and have no medical conditions but I am diagnosed with ADHD.

I've been suffering for the last 5 years with my body, My symptoms seem to come in waves that last a few days at a time but are getting much worse and consist of;

• Bloating (I look pregnant and have to undo my belt)
• Diarrhea/Constipation - sometimes both at once
• Stomach cramps
• Flatulation (which is foul smelling and sometimes productive with mucus)
• Low mood, fatigue and terrible brain fog
• Weak muscles and slow recovery time from exercise
• Loss of co-ordination - feeling unsteady on my feet

More recently I have started to experience migraines with aura, which end almost instantly after vomiting/diarrhea and always seem to occur during these "waves".

I first started noticing these problem after eating Pizza, my stomach would bloat and cramp almost immediately and I'd be ill for days after. Initially I thought it could be the cheese so cut out lactose and even tried making my own pizzas from scratch until one time the cooking process put me to bed with my first ever migraine.

I've since cut out alcohol and been sober for 2 years but nothing is working to make me feel better. 

I went to the Doctors recently and had some blood tests, everything is in range apart from two tests for liver function which were described as borderline.

My TTG ABS (IGA) result was 1.9CU [0.0 - 19.9] which is the test for Celiac disease as far as I am aware

And my abnormal results (described as borderline by my Doctor) were

• AST Serum level 36 u/L [0.0 - 35.0]
• Serum Alanine aminotransferase level 80 u/L [0.0 - 50]

I just can't go on like this for much longer. I'm 26 years old and feel like I'm 80, I am scared and embarrassed to go to the toilet as constipated diarrhea is perhaps the most disgusting thing I've ever had to deal with and the only way to get it out is to use the shower water pressure as an enema. I am fatigued all the time and can't do much exercise as the recovery period with aching muscles and soreness is so lengthy. 

I guess I am here looking for advice on if Celiac diagnosis is worth pursuing in your opinion. The test above seems to be negative but I can't find any other answer for my problems which are getting worse and I really relate to being "glutened" - while I can't identify my trigger when these symptoms come on it feels like I have been poisoned.

 

@Cramper, The moderators here (all Coeliac) are excellent and may offer better advice. First of all it is definitely worth pursuing a definitive diagnosis of Coeliac Disease either way if you can relate to being "glutened", as you may have Non Coeliac Gluten Sensitivity. However, you mentioned mucus and foul smelling with flatulence above which caught my eye. This could point to IBD, Ulcerative Colitis or Crohn's Disease. Mucus or puss in the stool is a sign of inflammation and a symptom of UC. I have UC and Coeliac Disease and have experienced mucus during UC flare ups many years ago.

[Cramper]

28 minutes ago, Rogol72 said:

@Cramper, The moderators here (all Coeliac) are excellent and may offer better advice. First of all it is definitely worth pursuing a definitive diagnosis of Coeliac Disease either way if you can relate to being "glutened", as you may have Non Coeliac Gluten Sensitivity. However, you mentioned mucus and foul smelling with flatulence above which caught my eye. This could point to IBD, Ulcerative Colitis or Crohn's Disease. Mucus or puss in the stool is a sign of inflammation and a symptom of UC. I have UC and Coeliac Disease and have experienced mucus during UC flare ups many years ago.

Hi Rogol,

Thanks for the information,

The conditions you mentioned are what my Dr said we will be looking for in a process of elimination before we ultimately diagnose it as IBS, then the Liver stuff came up and it seems the process stalled completely.

I've done my own research into all the possibilities and I guess I am here on the Celiac forum despite my blood test being negative as I relate the most to this condition and slightly hoped it would be the answer and know that sometimes you have to push for things like this to be investigated properly.

At this point I'm ready to cut out whatever I have to if I could feel better. If I didn't already know I need to continue eating Gluten to be tested for Celiac I would just try it myself now.

Personally I'm doubtful about it being IBS (or at least just IBS) because the symptoms are becoming more frequent, more intense and my overall health feels to be getting worse. My partner even comments that my whole mood changes and I become depressed and short tempered when the episodes occur. I used to be full of energy and life but now I feel like I am aging 10 years a day.

 

 

 

 

 

[trents]

Welcome to the forum, Cramper!

It is unfortunate that your physician only ordered one test for celiac disease. There are a number of others that could have been run and should have been run. We call this collection of tests a "full celiac panel". In addition, if you had been avoiding gluten or cut way back on it prior to the testing it would invalidate the results.

Here is a primer outlining what blood tests can be run for celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Different people's immunes system will respond differently and there is also enormous variation between racial groups in how they respond to individual tests. Many physicians don't realize this and will only order the tTG-IGA test. It's important to have these other tests in the full panel run, especially if the symptoms "scream" celiac disease like your do, yet the tTG-IgA comes up negative. But you must be eating regular amounts of gluten leading up to the day of the blood draw. The Mayo Clinic guidelines are two slices of wheat bread (or an equivalent amount of gluten) daily for 6-8 weeks pretest.

Specifically, as the physician to run these tests:

Total IGA

tTG-IGA

IgA Endomysial antibody (EMA)

Deamidated gliadin peptide (DGP IgA and IgG)

 

You can also get a more or less complete pane done by ordering a home test from a place like Imaware for about $100 US.

Unfortunately, there is still a lot of ignorance withing the medical community regard gluten-related disorders and you have to be your own advocate. In addition, the UK healthcare system seems to be pretty rigid and proscribed in how they do things and it can be hard to get things done out of the box.

Edited September 30, 2022 by trents

[Cramper]

Hi @trents

Thanks for the information. I'll look into purchasing the home tests here or indeed going private if my Doctor is still unhelpful next time we speak and will of course update the thread with any conclusions for other people reading this in future.

You're summary of healthcare in the UK is spot on, the NHS is great if you are on deaths door and is better than nothing being free but there are lots of people who suffer through their whole life in this country with various mental and physical conditions because of a lack of support if there is no obvious cause and/or solution to symptoms.

Blanket diagnosis are often given for conditions that devastate peoples lives - Anxiety, depression, IBS are some of the favourites when these are symptoms of something else rather than the underlying issue itself.

While I understand the government doesn't want to just run tests unnecessarily, people are forced to jump through so many hoops and do so much research themselves you would think all the back and forth must cost them more overall than just running the full panel initially!

 

 

 

Sorry, I meant to say

Anxiety, depression, IBS are some of the favourites when these are often symptoms of something else rather than the underlying issue itself.

In my previous post, but was unable to edit.

[trents]

14 minutes ago, Cramper said:

Hi @trents

Thanks for the information. I'll look into purchasing the home tests here or indeed going private if my Doctor is still unhelpful next time we speak and will of course update the thread with any conclusions for other people reading this in future.

You're summary of healthcare in the UK is spot on, the NHS is great if you are on deaths door and is better than nothing being free but there are lots of people who suffer through their whole life in this country with various mental and physical conditions because of a lack of support if there is no obvious cause and/or solution to symptoms.

Blanket diagnosis are often given for conditions that devastate peoples lives - Anxiety, depression, IBS are some of the favourites when these are symptoms of something else rather than the underlying issue itself.

While I understand the government doesn't want to just run tests unnecessarily, people are forced to jump through so many hoops and do so much research themselves you would think all the back and forth must cost them more overall than just running the full panel initially!

 

 

 

Sorry, I meant to say

Anxiety, depression, IBS are some of the favourites when these are often symptoms of something else rather than the underlying issue itself.

In my previous post, but was unable to edit.

You have a limited time to edit once you submit a post. The forum is purposefully set up that way to discourage spammers.

Yes, all medical care that is paid for by governments and insurance companies is driven (and limited) by probability statistics.

[knitty kitty]

@Cramper,

Welcome to the forum!  

Your symptoms sound like what I experienced.  I had Gastrointestinal Beriberi.  Celiac Disease damages the small intestine so vitamin absorption is affected.  Alcohol damages the small intestine, too, and vitamin absorption is affected.  Even though you quit drinking a couple of years ago, the subclinical Thiamine deficiency can still be there.  Symptoms mysteriously wax and wane, varying with how much Thiamine is consumed in the daily diet.  A twenty percent increase of Thiamine in the diet will produce an eighty percent improvement in symptoms.

Vitamin B1 is Thiamine.  When low in Thiamine, Gastrointestinal Beriberi can occur.  Gastrointestinal Beriberi has symptoms similar to Celiac Disease.  

Thiamine deficiency symptoms can be the same as ADHD symptoms, irritability, inability to concentrate, etc.

Thiamine deficiency can cause migraines.

Thiamine deficiency can cause Non Alcoholic Fatty Liver Disease (NAFLD) and cirrhosis.  

Every cell in our bodies needs Thiamine and magnesium to provide energy for living.  We can't store thiamine.  We have to get it from our diets, but the Standard American Diet (SAD) with an excess of carbohydrates doesn't provide enough Thiamine.

Thiamine in the form called Benfotiamine is a fat soluble form that gets into cells easily and helps our mitochondria to produce energy again.

Please read these articles and share them with your doctor.

Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/

And...

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

And...

High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition 

https://journals.biologists.com/dmm/article/14/3/dmm048355/237831/High-dose-vitamin-B1-therapy-prevents-the

And...

The Role of Vitamin Deficiency in Liver Disease: To Supplement or Not Supplement?

https://www.mdpi.com/2072-6643/13/11/4014/htm

 

[T burd]

6 hours ago, Cramper said:

Hi @trents

Thanks for the information. I'll look into purchasing the home tests here or indeed going private if my Doctor is still unhelpful next time we speak and will of course update the thread with any conclusions for other people reading this in future.

You're summary of healthcare in the UK is spot on, the NHS is great if you are on deaths door and is better than nothing being free but there are lots of people who suffer through their whole life in this country with various mental and physical conditions because of a lack of support if there is no obvious cause and/or solution to symptoms.

Blanket diagnosis are often given for conditions that devastate peoples lives - Anxiety, depression, IBS are some of the favourites when these are symptoms of something else rather than the underlying issue itself.

While I understand the government doesn't want to just run tests unnecessarily, people are forced to jump through so many hoops and do so much research themselves you would think all the back and forth must cost them more overall than just running the full panel initially!

 

 

 

Sorry, I meant to say

Anxiety, depression, IBS are some of the favourites when these are often symptoms of something else rather than the underlying issue itself.

In my previous post, but was unable to edit.

With you saying you throw up that brings me immediately to think celiac because I don’t think the other conditions cause you to vomit. I don’t know very much about them though. And yes I think Trents  has the list of tests you need to tell your doctor to run for you. My sister went to a gastroenterologist last year who is supposed to be an expert at diagnosing celiac and they only ran the same one test that you had. He was an older doctor here in the states. Then when she went to a regular family doctor they knew to run the whole panel. Doctors are not all equally knowledgeable.
 

does NHS have a online portal system, where are you can message your last doctor to ask them to write orders for those labs, or do you have to go in? 
 

good luck getting answers sooner than later because throwing up is terrible reaction, that I’m glad I do not have. 
 

 

[shadycharacter]

21 hours ago, Cramper said:

Hi T Burd,

There are all the tests I had 6 weeks ago. 

• Full Blood Count
• Haemoglobin Concentration
• Total White Blood Count
• Platelet Count
• Red Blood Cell Count
• Haematocrit
• Urea and electrolytes
• Serum Sodium level
• Serum Potassium level
• Serum urea level
• Serum Creatinine level
• Thyroid Function Test
• Serum TSH level
• Differential White Blood Cell Count
• Serum ferritin level
• Haemogloblin A1c Level
• Liver Function Tests
• Serum Alkaline phosphatase level
• Serum Alanine aminotransferase level
• Serum total bilburin level
• Serum albumin level
• Anti tissue transglutaminase level
• AST Serum level

Everything was within normal range apart from the Liver tests, two of which came back slightly above normal

• Ast Serum Level 36 u/L [0.0 - 35.0] Above High Reference Limit
• Serum alanine aminotransferase 80 iu/L [0-50]

There was also a note that said

TTG ABS (IGA) < 1.9 CU [0.0 - 19.9]; Negative results make Ceoliac Disease unlikely if individuals have been on a diet containing adequate gluten for 6 weeks prior to test. However if symptoms persist suggest check immunoglobulins. 

Today my Doctor had me back for the following blood tests (to repeat the Liver tests and rule out Hepatitis)

• Hepatitis B Surface Antigen
• Hep C Antibody (HCV)
• Autoimmune Liver Screen
• Immunoglobins & Electrophesis
• Liver Function Tests (LFT)

Ever since he saw these "Borderline" Liver results he has totally ignored all my other issues and is only focused on the Liver, but the other symptoms  have been around a lot longer than these Liver issues and I had a blood test for something else that included these Liver tests 3 years ago which proves this.

Unfortunately in the UK right now the healthcare system is not in the best shape and the way it works at my GP is a receptionist reviews the results and if anything is reported as out of range a very stressed and busy doctor rings you for 5 minutes and reviews them on the phone with you, paying little mind to the reason you had them in the first place.

 

Here's an article about a possible connection between gluten and elevated liver enzymes:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7868701/#!po=30.1980

"Many studies have shown improvement or normalization in aminotransferases with GFD [gluten free diet] and relapse with a gluten challenge." 

Also, about 1 in 40 to 1 in 60 people with celiac disease have a selective IgA deficiency that makes the ttgIgA test unreliable for excluding gluten intolerance:

https://en.wikipedia.org/wiki/Selective_immunoglobulin_A_deficiency

"SIgAD occurs in 1 in 39 to 1 in 57 people with celiac disease. This is much higher than the prevalence of selective IgA deficiency in the general population.[24] 

[...] 

It is more common in males than in females.[25]" 

[trents]

4 hours ago, shadycharacter said:

Here's an article about a possible connection between gluten and elevated liver enzymes:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7868701/#!po=30.1980

"Many studies have shown improvement or normalization in aminotransferases with GFD [gluten free diet] and relapse with a gluten challenge." 

Also, about 1 in 40 to 1 in 60 people with celiac disease have a selective IgA deficiency that makes the ttgIgA test unreliable for excluding gluten intolerance:

https://en.wikipedia.org/wiki/Selective_immunoglobulin_A_deficiency

"SIgAD occurs in 1 in 39 to 1 in 57 people with celiac disease. This is much higher than the prevalence of selective IgA deficiency in the general population.[24] 

[...] 

It is more common in males than in females.[25]" 

A recent research article posted on the forum showed that 20% of people of white European decent confirmed to have celiac disease by biopsy and 80% of people of black African decent having celiac disease confirmed by biopsy produced negative tTG-IGA scores.

Also, Scott recently posted a summary of the articles published on this forum over the years connecting liver inflammation with gluten disorders. Every doctor should be aware of this when patients present with elevated liver enzymes for which there seems to be no usual causes present such as the various hepatitises.

Edited October 1, 2022 by trents

[Cramper]

Thanks everyone, lots of information to take in here and to take back to my Doctor.

I'm waiting for the results from these follow up blood tests, hopefully they rule out Hepatitis (I have no idea where I could of got that from) and other liver issues. From my research my ALT ratio seems to be lower than what you can expect with Hep anyway (and in line with Celiac presentation.)

I'm still struggling, I ate out on Friday and shared Focaccia Bread with Hummus for a starter, then had a Burger with fries and a non-alcoholic beer for my main, instantly I was bloated and had stomach cramps and then was extremely tired and just felt awful by the end of the night and went to bed, the next morning at 6AM I woke up with a sharp stabbing pain behind my right eye and a nauseous feeling which is like my regular migraine symptoms just without the aura as I woke up with it.

Yesterday I had low appetite but had a sandwich and chicken in bread for my dinner, today I am still very bloated (uncomfortably so) and still feel rough. 

I'm going to write a diary of what I eat and then how I feel to see if I can draw any correlations, tempted to chug a pint of milk one day and eat a loaf of bread the next, to figure out what's going on for sure. I'm sure this is dietary and everything is related. 

 

[T burd]

2 hours ago, Cramper said:

Thanks everyone, lots of information to take in here and to take back to my Doctor.

I'm waiting for the results from these follow up blood tests, hopefully they rule out Hepatitis (I have no idea where I could of got that from) and other liver issues. From my research my ALT ratio seems to be lower than what you can expect with Hep anyway (and in line with Celiac presentation.)

I'm still struggling, I ate out on Friday and shared Focaccia Bread with Hummus for a starter, then had a Burger with fries and a non-alcoholic beer for my main, instantly I was bloated and had stomach cramps and then was extremely tired and just felt awful by the end of the night and went to bed, the next morning at 6AM I woke up with a sharp stabbing pain behind my right eye and a nauseous feeling which is like my regular migraine symptoms just without the aura as I woke up with it.

Yesterday I had low appetite but had a sandwich and chicken in bread for my dinner, today I am still very bloated (uncomfortably so) and still feel rough. 

I'm going to write a diary of what I eat and then how I feel to see if I can draw any correlations, tempted to chug a pint of milk one day and eat a loaf of bread the next, to figure out what's going on for sure. I'm sure this is dietary and everything is related. 

 

I was lactose intolerant when I was eating gluten. It damages your system for days or weeks or months so any kind of food can cause those symptoms until you heal if it is celiac. Hope you get all your testing soon so you can figure it out. 

[Cramper]

My results came back. Fortunately negative for hepatitis which is a good weight off my shoulder.

My liver tests are exactly the same apart from my Ast has gone down by 1 u/L is just within the reference limits this time around.

Which from my NHS Doctors perspective means no further action is necessary / no further investigation will take place.

The full list of bloods from this repeat test they took and there results are -

Hepatitis B surface Antigen - NEGATIVE
Hepatitis C antibody test - NEGATIVE

Result: Normal - No Further Action Required

Serum Total Protein level 74 g/L [60-80]
Serum albumin level 46 g/L [35-52]
Immunoglobulin G level 10.9 g/L [5.3 - 16.5]
Immunoglobulin A level 4.0G/L [0.7-4.0] 
Immunoglobulin M level 1.0 g/L [0.5-1.9]

Serum Alkaline Phosphatase level 76 u/L [40-150]
Serum alanine aminotransferase level 0 u/L [0-50] Above high reference limit
Serum total bilirubin level 12 umol/L [0 - 21.0]
Serum albumin level 46 g/L [35.0-52.0]
AST serum level 35 uL [0.0-35.0]

Result: Satisfactory - No Further Action Required

Clearly there is something else going on and I have decided to speak to my private Doctor through my work insurance scheme who is referring me to a gastroenterologist. This could take a while to kick into gear but I will update this thread in case someone else is in a similar situation to me once I have more information. 

 

[Cramper]

Edit: Serum alanine aminotransferase level 80 u/L [0-50] Above high reference limit (Missed the 8!)

[knitty kitty]

@Cramper,

I do wish you would give another thought to thiamine deficiency as Gastrointestinal Beriberi, and as a means to help your liver.  

see...  

Impact of thiamine supplementation in the reversal of ethanol induced toxicity in rats

https://pubmed.ncbi.nlm.nih.gov/24968580/

And...

The effects of thiamine and thiamine pyrophosphate on alcohol-induced hepatic damage biomarkers in rats

https://pubmed.ncbi.nlm.nih.gov/25753885/

And...

The effects of thiamine pyrophosphate on propofol-induced oxidative liver injury and effect on dysfunction

https://pubmed.ncbi.nlm.nih.gov/35253651/

And...

Thiamine Deficiency in a Nondrinker and Secondary Pulmonary Edema after Thiamine Replenishment

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7028406/

And...

Alcoholic hepatopathy, deficiency pathology and serum transaminases. Presentation of 2 clinical cases

https://pubmed.ncbi.nlm.nih.gov/1924989/

And...

Evaluation of thiamine as adjunctive therapy in COVID-19 critically ill patients: a two-center propensity score matched study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8242279/

 

[frieze]

On 10/4/2022 at 10:40 AM, Cramper said:

Edit: Serum alanine aminotransferase level 80 u/L [0-50] Above high reference limit (Missed the 8!)

Your ALT and AST reflect a high likelihood of celiac.  Good luck

[Marie Cooper]

Morning Cramper

 

I am going through numerous test. My son and my daughter also are all my blood test say normal range but if you get the NHS app then break all your results down into proper ranges I can assure you they will nor be normal. As mine are definitely not normal. My self 54 my son Josh 33 snd my daughter 36 are sll mow being tested for crohnes and ulcerative colitis and Diabetes type 1. Read the paper on the link between the two it states that the two are linked by a gene and this has only just been found put. My dad died from Ulcerative colitis when he was 36 so it is a very very serious chronic illness. Not only have we all got the same symptoms as you it has taken the doctors 50 years to diagnose me and noe my son and daughter are going through it. I would really hate for you to go through life like I have with a cronicly undiagnosed illness please please push for the test down your throat and your bowels called a colonoscopy. Also you could have all three and Diabetes type 1 also Celiac is linked to all these cronic illnesses. Also ranauds disease which effects your circulation. If you could like to contact me privately (by personal message) my name is Marie. I met two men this week, one with Ulcerative colitis and crohnes disease and diabetes type 1 and the other guy both IBDs and now he's going to get tested for diabetes type 1 after I spoke to him yesterday. I went blind for 30 mins when I was 17 and recently have had real problems with my vision disisiness and balance. Now my son has told me he's had numerous episodes of blindness this is linked to type 1 diabetes. Please call me I would like to help as the doctors dont seem to connect the links and why should we have to do all our own research just to get a proper diagnoses. I have recently got so ill my blood pressure from pain has been 230 over 120 and the consultant finally admitted that my blood pressure is due to pain. Really hope this helps you please call or what's app me.  Hopefully finally at 54 years old I will get the answers I need.

 

Marie

[Scott Adams]

Welcome to the forum @Marie Cooper. This thread is pretty old, so you may not get a reply from the original posters. 

Are you on a 100% gluten-free diet? 

[Cramper]

Hi All,

Long time no speak. I am still here though, over a year later.

My liver enzymes were back within tolerance over 6 months ago, but my stomach is still messed up.

I have been eating healthier and doing more exercise but this hasn't helped with anything other than fat loss.

I have diarrhoea constantly these days and must shower 3-4 times a day just to clean up, as the toilet paper doesn't cut it. Additionally, the stool is dark and gritty and sticks to the bowl.

I have tried to go back to the Drs, but they sent me away after asking "What do you want me to do about it?" when I described my symptoms - and claiming the only thing it can be is IBS. 

I don't know what to do,  If I didn't work from home I would be disabled and on welfare at this point.

@Marie Cooper - my father is diabetic as is my grandmother, but my blood sugar levels have always been in tolerance.

[Scott Adams]

Hi @Cramper, thanks for the update! Are you on a gluten-free diet? 

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:

 

 

[T burd]

Marie, did they test your ttg iga and ttg igg ever??? Are you eating 100% gluten free with no cross contact? 

[Taradaktull]

Have they checked you for microscopic colitis. The test is a colonoscopy with a biopsy. That can cause diarrhea. Good luck.

[Celiac16]

Going low carb helped me tremendously with postprandial bloating, fatigue, nausea, and sometimes vertigo. I was strict gluten and dairy free for years but I didn’t feel like it was enough. I eventually experimented eliminating grains and then cutting out all carbs and sugars and all my symptoms improved. I’ve been able to put on weight which was never possible for me and I feel a lot stronger.(I am doing high fat, medium protein, under 20g carb)

i feel like my energy was miss focused on the celiacs diagnosis- I kept going back to the drs and getting tons of tests which lead to “your fine” so really improving the quality of my diet helped me be proactive. I feel a lot more empowered and hopeful and focus on minimizing inflammation by keeping my blood sugars low.