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Marcos

35 yrs of Misdiagnosis & Pain

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Hello everyone

My story is pretty simple. I've had massive digestive issues since I was 16. I'm now 52. My late Mother and her Mother had both also suffered their entire lives, yet the condition was never diagnosed in either of them.

Perhaps the worst symptom for me initially was huge distension (Bloating) which would often strike late evening, 6 hours or so after eating, when I would bloat like I was 9 months pregnant before expelling huge amounts of air via very loud and long burps, that would last up to 8 hours, keeping me awake all night long. Acid reflux would sometimes occur and my tummy would always sound like a washing machine on full cycle.

At the age of 22 I began a career as a Police officer, however due to this debilitating condition having such a detrimental effect on my health, I was forced to retire on a ill health pension in 2005, in part also due to massive daily headaches, hemiplegic migraines and total loss of energy etc etc.

I underwent many tests in my life, including cameras in and out of most cavities, yet nothing was ever found.

In short, I lived my life afraid to eat, afraid to go out in case I needed to loo quickly and everything else associated with the condition, my Doctor had labelled as simply IBS.

As I got older, my symptoms worsened, I now have a permanently white tongue (Attractive), swollen submandibular glands, almost constant abdominal pain, total loss of energy where even walking upstairs becomes almost impossible, night sweats, dry eyes, facial dryness above eyebrows and a constant feeling in my tummy, like I have swallowed toy building blocks, covered in acid.

My blood tests always reveal inflammation, yet all the specialists I have ever seen, cannot find the source. I even paid £2500 for a pet scan of my swollen lymph nodes, due to concerns I may have had Lymphoma, as all the symptoms were there, but fortunately it was negative.

I was recently diagnosed with S.I.B.O and Addisons Disease (due to low blood pressure and dizziness), along with Fibromyalgia due to muscle pain. I've been on Codeine tablets for over 10 years which I'm sure don't help, and I recently stopped taking some nasty meds including Gabapentin and similar neuro style meds.

Yet, I had never been tested for Celiac or Gluten intolerance during all this time. Never, which I find shocking.

Two days ago, I purchased a home test kit for gluten which gave a strong positive result. To double check the result, I've booked a blood test with my Doctor for confirmation.

What really infuriates me, is that if I had been tested right at the beginning of all this, I could have lived a near normal life, kept my career and reduced the hellish suffering that this nasty condition brings.

I now wonder how much damage has been caused to my body. I often see undigested food in my waste, I often smell the acrid stench of bile and see either orange, bright green or even near black stools.

Thank God, for the simple home test that may be about to change my life and stop me feeling like some kind of hypochondriac due to the amount of different issues experienced by the body, all decreasing and reducing a good quality of life.

I just wanted to outline my story in the hope that it may help others who may still be undiagnosed but who have never been tested for Celiac or gluten intolerance. 

My regards and best wishes to you all

Marcos

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4 hours ago, Marcos said:

Hello everyone

My story is pretty simple. I've had massive digestive issues since I was 16. I'm now 52. My late Mother and her Mother had both also suffered their entire lives, yet the condition was never diagnosed in either of them.

Perhaps the worst symptom for me initially was huge distension (Bloating) which would often strike late evening, 6 hours or so after eating, when I would bloat like I was 9 months pregnant before expelling huge amounts of air via very loud and long burps, that would last up to 8 hours, keeping me awake all night long. Acid reflux would sometimes occur and my tummy would always sound like a washing machine on full cycle.

At the age of 22 I began a career as a Police officer, however due to this debilitating condition having such a detrimental effect on my health, I was forced to retire on a ill health pension in 2005, in part also due to massive daily headaches, hemiplegic migraines and total loss of energy etc etc.

I underwent many tests in my life, including cameras in and out of most cavities, yet nothing was ever found.

In short, I lived my life afraid to eat, afraid to go out in case I needed to loo quickly and everything else associated with the condition, my Doctor had labelled as simply IBS.

As I got older, my symptoms worsened, I now have a permanently white tongue (Attractive), swollen submandibular glands, almost constant abdominal pain, total loss of energy where even walking upstairs becomes almost impossible, night sweats, dry eyes, facial dryness above eyebrows and a constant feeling in my tummy, like I have swallowed toy building blocks, covered in acid.

My blood tests always reveal inflammation, yet all the specialists I have ever seen, cannot find the source. I even paid £2500 for a pet scan of my swollen lymph nodes, due to concerns I may have had Lymphoma, as all the symptoms were there, but fortunately it was negative.

I was recently diagnosed with S.I.B.O and Addisons Disease (due to low blood pressure and dizziness), along with Fibromyalgia due to muscle pain. I've been on Codeine tablets for over 10 years which I'm sure don't help, and I recently stopped taking some nasty meds including Gabapentin and similar neuro style meds.

Yet, I had never been tested for Celiac or Gluten intolerance during all this time. Never, which I find shocking.

Two days ago, I purchased a home test kit for gluten which gave a strong positive result. To double check the result, I've booked a blood test with my Doctor for confirmation.

What really infuriates me, is that if I had been tested right at the beginning of all this, I could have lived a near normal life, kept my career and reduced the hellish suffering that this nasty condition brings.

I now wonder how much damage has been caused to my body. I often see undigested food in my waste, I often smell the acrid stench of bile and see either orange, bright green or even near black stools.

Thank God, for the simple home test that may be about to change my life and stop me feeling like some kind of hypochondriac due to the amount of different issues experienced by the body, all decreasing and reducing a good quality of life.

I just wanted to outline my story in the hope that it may help others who may still be undiagnosed but who have never been tested for Celiac or gluten intolerance. 

My regards and best wishes to you all

Marcos

Welcome to the forum.  Thank you for sharing your story.  I am sorry that you have had to suffer for so long.  Celiac disease is so frustrating and still people (and that includes medical) are not aware if it.  Thank goodness for that home test kit.  

I hope your recovery is swift!  Please feel free to ask questions or simply vent.  We are all here for each other.  I wish you well.  

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Hi Marcos,

welcome to the community.

it is quite frustrating to go decades with this condition being undiagnosed 

I too was labeled IBS for 2 decades and you and I share some symptoms. 

All your feelings are valid, the regret over loss of our primary or chosen career and employment are terrible and often tragically befall us.

I am glad you are able to determine the illness that has silently , elusively , wreaked havoc on you and your life. You are one of many. 

It is gracious you joined us to share your story and aid any current or future visitors and members who may see themselves in some portion of your story.

I wish you luck on your healing path, may it be swift, may you find comfort and peace in the community you have been thrust into that you likely belonged to all along.

Edited by Awol cast iron stomach
Autocorrect incorrect
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Welcome. We have quite similiar stories as far as the length of time it took for diagnosis.  I want to assure you that you can heal. I had severe neurological issues and could not walk unaided by the time I was diagnosed and was covered in various places with the joy that is DH in addition to all the severe tummy issues. I didn't think it possible but I did heal. Please be patient with your body when you are able to get to the diet. While you are waiting (you have to be consuming gluten for your doctor to do celiac testing) do read the Newbie 101 thread at the top of the Coping section as it will have a lot of info that will help keep you safe. You can drop your gluten consumption down to the equivelent of a couple pieces of bread. I hope you are feeling better soon. Hang in there.

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Thank you both for such a warm and understanding welcome.

Sadly I visited my GP on friday armed with the test results of my home test kit which I was assured was 90+ percent reliable, but my GP replied that I'd had a test in the past which was negative.

I explained that every time I ate something with wheat in it, my stomach would distend massively followed by 8 hours of intense non stop extremely loud burping that would often keep me awake all night.

He hinted that I had been subjected to tests in the distant past but nothing was found and that it could be either  IBS or just simply in my head.

I had never seen this Doctor before so I politely and somewhat frustratingly informed him that a non-related scan had confirmed Diverticulitis and that I had recently been diagnosed with Addisons Disease following a Synacthen test and S.I.B.O following a positive hydrogen breath test.

To be honest and it's hard for me to say this as a man, when he said he wouldn't conduct a new test and that it might all be in my head, I felt so frustrated I didn't know whether to cry or storm out. Thankfully I did neither but it was obvious that I was upset by his remarks.

I further went on to explain that I had recently passed bright grass green stools, dark black stools and even pure foam and lots of it along with huge amounts of undigested matter and a foul and highly embrassing bile like stench.. I also had blood in my urine and pain in my kidneys area and even more embarrassing than this, I now had painful ejculation and severe night sweats forcing me to sleep apart from my lovely wife.

And to top all that off, I had been suffering from a badly swollen lymph node in my neck and raised nodes under my arms and in my groin.

I hate talking about all these symptoms and the only person I really talk to is my wife. I don't want to upload my medical problems onto others but after suffering from so much pain and disruption in my life, I do have days when I wish I wasn't here, as at least I would be pain free.

Don't worry, I'm not suicidal but I can certainly understand why some would choose this path.

Anyway, to add to my ever lengthening list of symptoms, I've recently also started to suffer from dry eye in my left eye only and dry flaky skin along my eyebrows and down the sides of my nose. The left side is also where the lymph is and I had put my extreme fatigue and dizziness down to a possible lymph gland infection which started some 5 years ago. I had fainted several times last summer and a blood test showed that my Thyroid levels were going up and down but not down low enough for them to worry. They also told me my blood pressure was dangerously low when I lay down and this is what led to the Synacthen test and them prescribing me Hydrocortisone.

( I'm getting to the point....Really I am )

So imagine my surprise when I conducted the home Celiac test ( on the advice of my wife who is a community nurse) and receiving a positive result. A little research into long term Celiac disease listed a whole range of conditions that can arise from not being treated correctly, many of which appear to relate to my current state of health.

Anyhooo, so that I don't bore you silly if you have managed to get this far, reading my ramblings. the Doctor eventually said he would let me take another test to confirm or refute the previous test results.

So, I have a blood test booked for this Monday morning and hopefully I will have confirmation by the end of the week.

All I want is an answer as to why I am suffering from so many different symptoms but my Doctor simply replied, "Well we can't treat everything".

I hope to update you shortly but as I have very recently and  deliberately consumed a large bowl of Honey Nut Loops to ensure that I have gluten in my system for the morning, I'm already starting to bloat and cramp. I hope to get to sleep tonight otherwise it could be another very long, bloated and burp filled night.

Thanks for listening to my ramblings and I apologise for going into so much detail but I thought I should expand a little further as to what happened at my Doctors.

Bless you all and be well

Marcos

 

Edited by Marcos
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30 minutes ago, Marcos said:

Thank you both for such a warm and understanding welcome.

Sadly I visited my GP on friday armed with the test results of my home test kit which I was assured was 90+ percent reliable, but my GP replied that I'd had a test in the past which was negative.

I explained that every time I ate something with wheat in it, my stomach would distend massively followed by 8 hours of intense non stop extremely loud burping that would often keep me awake all night.

He hinted that I had been subjected to tests in the distant past but nothing was found and that it could be either  IBS or just simply in my head.

I had never seen this Doctor before so I politely and somewhat frustratingly informed him that a non-related scan had confirmed Diverticulitis and that I had recently been diagnosed with Addisons Disease following a Synacthen test and S.I.B.O following a positive hydrogen breath test.

To be honest and it's hard for me to say this as a man, when he said he wouldn't conduct a new test and that it might all be in my head, I felt so frustrated I didn't know whether to cry or storm out. Thankfully I did neither but it was obvious that I was upset by his remarks.

I further went on to explain that I had recently passed bright grass green stools, dark black stools and even pure foam and lots of it along with huge amounts of undigested matter and a foul and highly embrassing bile like stench.. I also had blood in my urine and pain in my kidneys area and even more embarrassing than this, I now had painful ejculation and severe night sweats forcing me to sleep apart from my lovely wife.

And to top all that off, I had been suffering from a badly swollen lymph node in my neck and raised nodes under my arms and in my groin.

I hate talking about all these symptoms and the only person I really talk to is my wife. I don't want to upload my medical problems onto others but after suffering from so much pain and disruption in my life, I do have days when I wish I wasn't here, as at least I would be pain free.

Don't worry, I'm not suicidal but I can certainly understand why some would choose this path.

Anyway, to add to my ever lengthening list of symptoms, I've recently also started to suffer from dry eye in my left eye only and dry flaky skin along my eyebrows and down the sides of my nose. The left side is also where the lymph is and I had put my extreme fatigue and dizziness down to a possible lymph gland infection which started some 5 years ago. I had fainted several times last summer and a blood test showed that my Thyroid levels were going up and down but not down low enough for them to worry. They also told me my blood pressure was dangerously low when I lay down and this is what led to the Synacthen test and them prescribing me Hydrocortisone.

( I'm getting to the point....Really I am )

So imagine my surprise when I conducted the home Celiac test ( on the advice of my wife who is a community nurse) and receiving a positive result. A little research into long term Celiac disease listed a whole range of conditions that can arise from not being treated correctly, many of which appear to relate to my current state of health.

Anyhooo, so that I don't bore you silly if you have managed to get this far, reading my ramblings. the Doctor eventually said he would let me take another test to confirm or refute the previous test results.

So, I have a blood test booked for this Monday morning and hopefully I will have confirmation by the end of the week.

All I want is an answer as to why I am suffering from so many different symptoms but my Doctor simply replied, "Well we can't treat everything".

I hope to update you shortly but as I have very recently and  deliberately consumed a large bowl of Honey Nut Loops to ensure that I have gluten in my system for the morning, I'm already starting to bloat and cramp. I hope to get to sleep tonight otherwise it could be another very long, bloated and burp filled night.

Thanks for listening to my ramblings and I apologise for going into so much detail but I thought I should expand a little further as to what happened at my Doctors.

Bless you all and be well

Marcos

 

Have you been gluten free?  If so, one bowl of cereal isn't enough to get a positive blood test tomorrow.

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Karen is correct.  You need to be on a full gluten diet in order for the celiac tests to work (antibodies in the blood stream).  It can take a few days or weeks for those antibodies to build up enough.  It is an individual thing, so celiac experts err on the side of caution.   Since you had a positive on the bio card (home test), you might get a positive on the blood test or you might not.  If negative, consider a gluten challenge (8 to 12 weeks gluten daily).  

Your doctor is wrong.  You can develop celiac disease at any age.  My own daughter tested negative, but she will need to get retested every few years for life!  

Find another doctor.  This one is not celiac-savvy.  Shocking when a doctor can google anything.  

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4 hours ago, cyclinglady said:

Karen is correct.  You need to be on a full gluten diet in order for the celiac tests to work (antibodies in the blood stream).  It can take a few days or weeks for those antibodies to build up enough.  It is an individual thing, so celiac experts err on the side of caution.   Since you had a positive on the bio card (home test), you might get a positive on the blood test or you might not.  If negative, consider a gluten challenge (8 to 12 weeks gluten daily).  

Your doctor is wrong.  You can develop celiac disease at any age.  My own daughter tested negative, but she will need to get retested every few years for life!  

Find another doctor.  This one is not celiac-savvy.  Shocking when a doctor can google anything.  

Hi Marcos and welcome :)

Lot's of good advice above already. Some other suggestions.

Your GP sounds like they've tuned you out. As CL says above consider finding another one. Also, next time and frankly every time you go again prepare for the consult as if it were a work meeting. It's very difficult sometimes with an unsupportive or even confrontational Doctor to remember everything you wanted to say. You should take some very brief notes in bullet point form covering everything you want to relate and what you want to happen. Take your wife if it helps. Don't allow yourself to be fobbed off because a GP thinks they know best. That's not always the case!

These are the commonly used Celiac tests:

Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

You may want to request a copy of previous tests from the GP if testing proves inconclusive so you know which tests have been run in the past?

You need to have been eating gluten for at least 6-8 weeks beforehand. If you've not been you run the risk of a false negative. Although given your reaction to the store bought test maybe that won't be a problem for you. Regardless, don't go gluten free till the tests are complete. Not just the blood test, they may want an endoscopy and you need to be eating gluten for that too. 

If you get a negative test do consider the diet in any case. I had many of the same experiences as you, tested negative, but removing gluten worked where medications never did. So a negative test may not mean you've not found your answer. 

One final point, the emotional side of this is very difficult to process. I hope writing about it is helpful, it was for me. You will find this a supportive community and there's lots of good advice and support available here. Do consider however finding a counsellor who can help you come to terms with this. It's very difficult on your own and you may find it easier to confide some of this in a stranger. It helped me :)

 Best of luck!

Matt

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On 25/11/2017 at 6:35 PM, Awol cast iron stomach said:

Hi Marcos,

welcome to the community.

it is quite frustrating to go decades with this condition being undiagnosed 

I too was labeled IBS for 2 decades and you and I share some symptoms. 

All your feelings are valid, the regret over loss of our primary or chosen career and employment are terrible and often tragically befall us.

I am glad you are able to determine the illness that has silently , elusively , wreaked havoc on you and your life. You are one of many. 

It is gracious you joined us to share your story and aid any current or future visitors and members who may see themselves in some portion of your story.

I wish you luck on your healing path, may it be swift, may you find comfort and peace in the community you have been thrust into that you likely belonged to all along.

Thanks you for your reply and support Awol,

I now have a little more time to reply individually..... I think many practitioners hugely underestimate the effect and impact that a digestive condition can have on an individual.

I was employed as a serving Police officer here in the UK for 15yrs before being retired against my will on medical grounds.

I recall one specific example of being on duty in what we call the police carrier vehicle. This is basically a large van filled with Police officers on a Friday, tasked with responding to rowdy revellers leaving pubs and bars in our town. Also present was a supervising Police inspector and a sergeant. Whilst we were being driven around waiting for emergency calls to flood in, which was pretty normal for a Friday, my stomach suddenly began to bloat massively which in turn caused me to start a huge wave of uncontrolled burping much to the irritation of my fellow officers, however there was nothing I could physically do to stop. As the burps continued to rasp loudly from my body, I recall being severely reprimanded by my supervisor and ordered to cease burping immediately. It was a though he thought I was doing this deliberately to annoy the crew despite my repeated objections that I had no control over what was happening, he could not comprehend that these actions were involuntary. I tried so hard to hold the gas inside me and suffered four long hours of embarrassment and further harassment from my team.

There are numerous conditions which involve disabilities, yet because digestive conditions are an unseen condition, it sometimes appears that they don't count in this world.

Just because we have two legs and two arms and are able to walk, does not mean that we aren't at times suffering from considerable pain and discomfort that comes from such a condition.

In my case in the UK, I was told by my Sergeant that they were trying to get rid of me before new changes came into force relating to the disability at work act was to take effect later that same year. They were successful.

I now work for myself, as this is the only way that I can keep working when I am well enough and be able to stay at home when I am not.

Thank you once again for such a kind and warm welcome and I too wish you the very best possible outcome with your condition too.

Regards

Marcos

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On 25/11/2017 at 7:04 PM, ravenwoodglass said:

Welcome. We have quite similiar stories as far as the length of time it took for diagnosis.  I want to assure you that you can heal. I had severe neurological issues and could not walk unaided by the time I was diagnosed and was covered in various places with the joy that is DH in addition to all the severe tummy issues. I didn't think it possible but I did heal. Please be patient with your body when you are able to get to the diet. While you are waiting (you have to be consuming gluten for your doctor to do celiac testing) do read the Newbie 101 thread at the top of the Coping section as it will have a lot of info that will help keep you safe. You can drop your gluten consumption down to the equivelent of a couple pieces of bread. I hope you are feeling better soon. Hang in there.

Thank you for your advice Ravenwoodglass

I shall pop over to the threads mentioned and have a good read this morning.

I'm so glad that you have recovered to a degree of at least feeling better than did. I do love the sound of being able to heal as the thought of just a little respite at this moment seems so very far away.

I shall try to remain positive and wish to thank you for your kind words and valuable advice.

My respect to you

Marcos

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7 hours ago, kareng said:

Have you been gluten free?  If so, one bowl of cereal isn't enough to get a positive blood test tomorrow.

Hi Kareng

Thank you for your reply, no I haven't been on a gluten free diet as such. I can only seem to tolerate two meals a day. I have porridge oats every morning followed by one 'normal meal' of an evening. I've been eating just a very basic chicken casserole for the best part of the week since the home test as it doesn't appear to upset my tummy as much. I conducted the home test early last week. I think it was Monday when the home test was positive after eating that darn cereal and having a massive reaction like I had swallowed bleach in my tummy or had eaten square edge toy bricks which is how my stomach felt.

I just hope that the gluten may still be present in my system at the time of my blood test which I had first thing this morning. Fingers crossed.

Best regards

Marcos

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6 hours ago, cyclinglady said:

Karen is correct.  You need to be on a full gluten diet in order for the celiac tests to work (antibodies in the blood stream).  It can take a few days or weeks for those antibodies to build up enough.  It is an individual thing, so celiac experts err on the side of caution.   Since you had a positive on the bio card (home test), you might get a positive on the blood test or you might not.  If negative, consider a gluten challenge (8 to 12 weeks gluten daily).  

Your doctor is wrong.  You can develop celiac disease at any age.  My own daughter tested negative, but she will need to get retested every few years for life!  

Find another doctor.  This one is not celiac-savvy.  Shocking when a doctor can google anything.  

Thank you for taking the time to reply Cycling lady. 

I can only sit back and wait now as I had the blood taken this morning,

I'm sorry to hear your daughter is now suffering too, which reminds me that both my daughters now in their 20's have both been reporting digestive issues. One has even had to go Vegan, avoiding all gluten and dairy too to obtain any relief but as far as I know, she has never been tested for Celiac.

My poor old Mother suffered her entire life with massive bloating and she could never eat pastry or freshly baked bread or new bread as she called it. Her mother and her Gran also suffered too from what she told me.

I understand that there can be a hereditary link. I'm a non identical twin but my brother can eat anything and everything he likes lol. Luck of the draw I guess.

May I wish you both ever improving health and wellbeing

My very best wishes to you both

Marcos

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3 hours ago, Jmg said:

Hi Marcos and welcome :)

Lot's of good advice above already. Some other suggestions.

Your GP sounds like they've tuned you out. As CL says above consider finding another one. Also, next time and frankly every time you go again prepare for the consult as if it were a work meeting. It's very difficult sometimes with an unsupportive or even confrontational Doctor to remember everything you wanted to say. You should take some very brief notes in bullet point form covering everything you want to relate and what you want to happen. Take your wife if it helps. Don't allow yourself to be fobbed off because a GP thinks they know best. That's not always the case!

These are the commonly used Celiac tests:

Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

You may want to request a copy of previous tests from the GP if testing proves inconclusive so you know which tests have been run in the past?

You need to have been eating gluten for at least 6-8 weeks beforehand. If you've not been you run the risk of a false negative. Although given your reaction to the store bought test maybe that won't be a problem for you. Regardless, don't go gluten free till the tests are complete. Not just the blood test, they may want an endoscopy and you need to be eating gluten for that too. 

If you get a negative test do consider the diet in any case. I had many of the same experiences as you, tested negative, but removing gluten worked where medications never did. So a negative test may not mean you've not found your answer. 

One final point, the emotional side of this is very difficult to process. I hope writing about it is helpful, it was for me. You will find this a supportive community and there's lots of good advice and support available here. Do consider however finding a counsellor who can help you come to terms with this. It's very difficult on your own and you may find it easier to confide some of this in a stranger. It helped me :)

 Best of luck!

Matt

Thank You Matt for a very informative reply.

I actually said to the Doctor during my appointment, why is it that when I come into the surgery alone, you appear to speak to me as though I have mental health related symptoms yet when my wife attends also, I'm treated totally different.

I even asked if there was some kind of alert marker on my file which he denied. (  I really didn't want to ask that question for fear of being suspected of paranoia).

I explained that whilst I did not wish to come across as paranoid in any way, I was concerned regarding the approach to my medical issues and the disruption that it was causing to my family life.

I should perhaps explain the reason behind my asking that question.

Doctors initial replies.

Dr) So No, you don't need another test because you tested negative previously.

Me) Sorry, I didn't realise I had already been tested for Celiac. Yet the home test result was positive, does that mean the test was wrong?

Dr) I have no idea. So, what are you thinking?

Me) Pardon?

Dr) So what are you thinking?

Me) Thinking?  Sorry, I don't understand your question.

Dr) You've had a variety of test for you digestive issues over the years and all results are negative, so what are you thinking?

Me) I'm not thinking anything, I just came in to request a Celiac test following a positive home test result.

Dr) So what's on your mind?

Me) My mind? Are you suggesting this is all in my mind?

Dr) Well you have had several tests, all negative, so what do you want me to do? We can't fix everything, we don't have a magic wand.

Me) Ok, sorry to have bothered you, I will order my own private test and write a letter to the senior practice manager outlining my concerns.

Dr) Ok, I will do another Celiac test.

And that's the way my appointment went. He agreed somewhat reluctantly to undertake another blood test which was taken this morning.

As you say Matt, the emotional side is difficult to process, especially if you appear to be suffering from a wide range of symptoms, Not through manifestation, but real actual and in some cases visible symptoms.

I a  now starting to think that they think I may have mental health issues as it appears to be a fine line between expressing ones own frustrations at the lack of any form of treatment or resolution to very real and debilitating symptoms.

I absolutely hate visiting my surgery, I hate having to even speak about what is affecting me and how much of a toll the pain and discomfort is having on my life. I even told him that I wasn't there out of choice and that I didn't really want to come into the surgery and make a nuisance of myself, which is how they are starting to make me feel.

Sorry, I appear to be rambling on once again. I understand fully that I'm probably offloading as I have kept so much in for so very long, but I do despair when the only person that can help me, doesn't appear to take me seriously.

A frustrated Marcos

 

 

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Many of us have been thought to have psychological issues prediagnosis. I even had a neurologist look at the lesions on my brain scan and tell me they were normal (they were not they were diagnostic of antibodies attacking the brain) and he told me I just wanted to be sick. After I was finally diagnosed my GI asked me the best part and I told him sleeping through the night not being woken up by painful violent D. He said I should have told him that was happening as IBS doesn't wake someone up. I did he just wasn't listening.  I could go on but I won't just know you are not alone in having doctors that are useless.

It sounds like your doctor is one of the not so great ones. I hope your doctor ordered a full panel and if you can get copies of your test results it would be good to do so. If you can change doctors you want to have copies of all the tests to show the new doctor.  After all your testing is done do go gluten free strictly. No matter what the results. I would be willing to bet you get some relief before long.

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4 hours ago, Marcos said:

Me) Ok, sorry to have bothered you, I will order my own private test and write a letter to the senior practice manager outlining my concerns.

Outstanding, I'm doffing my cap in your direction. One thing I realised was my childhood placement of doctors on a pedestal wasn't helping me. They're human, there's good, bad and often indfifferent, just like policemen :P  You need to make sure if they're fobbing you off that you ask them some closed questions. eg. 'On what clinical basis have you excluded celiac given that up to 10% test seronegative and the standard NHS test doesn't include the latest DGP markers?' Of course that requires confidence and assertiveness, which is difficult to muster when you're unwell, tired and worried. So again, well said.  

If more info is helpful I collected some links in this post which include a very comprehensive list of associated symptoms. I found it useful as I made the mental leap connecting things which I'd hitherto thought of as separate. It may be you have other symptoms which when collated together strengthen your case. 

Like me you're in the UK. The standard NHS test I received didn't cover all the markers. Given you've tested positive on a home test this may not be an issue for you but do request a copy of the test when it arrives, especially if negative. I had to pay my surgery a fiver for this. :rolleyes: but worth it to find out what they had and hadn't tested. 

4 hours ago, Marcos said:

Sorry, I appear to be rambling on once again. I understand fully that I'm probably offloading as I have kept so much in for so very long, but I do despair when the only person that can help me, doesn't appear to take me seriously.

No apology necessary. This is the place to vent. Fwiw I could've written your paras about how you feel visiting the surgery. Remember the average GP has very little knowledge of this condition. Hopefully you can get a referral to a decent Gastroenterologist. But it may also be useful to reduce your own expectations of what the medical world can do for you beyond diagnosis. 

Hopefully diagnosis for you won't be as problematic. For now, stay the course and try not to get swept away by the emotional burden or the tendency to say 'what if' (which I find still very difficult). Focus on how this could be a very positive time for you and be optimistic. If you're going to have an illness, and there's no choice in that, then one which responds so well to a diet change isn't a bad one to draw.

Wishing you all the best,

Matt

 

 

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6 hours ago, Marcos said:

Thanks you for your reply and support Awol,

I now have a little more time to reply individually..... I think many practitioners hugely underestimate the effect and impact that a digestive condition can have on an individual.

I was employed as a serving Police officer here in the UK for 15yrs before being retired against my will on medical grounds.

I recall one specific example of being on duty in what we call the police carrier vehicle. This is basically a large van filled with Police officers on a Friday, tasked with responding to rowdy revellers leaving pubs and bars in our town. Also present was a supervising Police inspector and a sergeant. Whilst we were being driven around waiting for emergency calls to flood in, which was pretty normal for a Friday, my stomach suddenly began to bloat massively which in turn caused me to start a huge wave of uncontrolled burping much to the irritation of my fellow officers, however there was nothing I could physically do to stop. As the burps continued to rasp loudly from my body, I recall being severely reprimanded by my supervisor and ordered to cease burping immediately. It was a though he thought I was doing this deliberately to annoy the crew despite my repeated objections that I had no control over what was happening, he could not comprehend that these actions were involuntary. I tried so hard to hold the gas inside me and suffered four long hours of embarrassment and further harassment from my team.

There are numerous conditions which involve disabilities, yet because digestive conditions are an unseen condition, it sometimes appears that they don't count in this world.

Just because we have two legs and two arms and are able to walk, does not mean that we aren't at times suffering from considerable pain and discomfort that comes from such a condition.

In my case in the UK, I was told by my Sergeant that they were trying to get rid of me before new changes came into force relating to the disability at work act was to take effect later that same year. They were successful.

I now work for myself, as this is the only way that I can keep working when I am well enough and be able to stay at home when I am not.

Thank you once again for such a kind and warm welcome and I too wish you the very best possible outcome with your condition too.

Regards

Marcos

Hi Marcos,

I hope your testing goes well today. As others stated this Dr may not be the best fit for you especially bedside manner. It sounds like you nurse wife is golden and will aid you however she can to possibly locate another. I know NHS is different than US insurance based system so I am unsure of the complexities of changing Dr's and time lines.

Managed out prior to the work policy changes -wow 

I hear stories of things like that, but I never want to believe it really occurs. 

However I must. It seems to be a common thing for certain illnesses/ diseases.

I can also imagine the pressure of the superior being there telling you to cease a biological function. Additionally, your masculine profession further exacerbated the tough it out metality. A man and law enforcement double dose of you can not feel nor acknowledge pain. A societal label for your gender and profession.

I am glad you created your own employment now and it is a fit. 

We are here.

 

 

 

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On 11/24/2017 at 3:09 AM, Marcos said:

Hello everyone

My story is pretty simple. I've had massive digestive issues since I was 16. I'm now 52. My late Mother and her Mother had both also suffered their entire lives, yet the condition was never diagnosed in either of them.

Perhaps the worst symptom for me initially was huge distension (Bloating) which would often strike late evening, 6 hours or so after eating, when I would bloat like I was 9 months pregnant before expelling huge amounts of air via very loud and long burps, that would last up to 8 hours, keeping me awake all night long. Acid reflux would sometimes occur and my tummy would always sound like a washing machine on full cycle.

At the age of 22 I began a career as a Police officer, however due to this debilitating condition having such a detrimental effect on my health, I was forced to retire on a ill health pension in 2005, in part also due to massive daily headaches, hemiplegic migraines and total loss of energy etc etc.

I underwent many tests in my life, including cameras in and out of most cavities, yet nothing was ever found.

In short, I lived my life afraid to eat, afraid to go out in case I needed to loo quickly and everything else associated with the condition, my Doctor had labelled as simply IBS.

As I got older, my symptoms worsened, I now have a permanently white tongue (Attractive), swollen submandibular glands, almost constant abdominal pain, total loss of energy where even walking upstairs becomes almost impossible, night sweats, dry eyes, facial dryness above eyebrows and a constant feeling in my tummy, like I have swallowed toy building blocks, covered in acid.

My blood tests always reveal inflammation, yet all the specialists I have ever seen, cannot find the source. I even paid £2500 for a pet scan of my swollen lymph nodes, due to concerns I may have had Lymphoma, as all the symptoms were there, but fortunately it was negative.

I was recently diagnosed with S.I.B.O and Addisons Disease (due to low blood pressure and dizziness), along with Fibromyalgia due to muscle pain. I've been on Codeine tablets for over 10 years which I'm sure don't help, and I recently stopped taking some nasty meds including Gabapentin and similar neuro style meds.

Yet, I had never been tested for Celiac or Gluten intolerance during all this time. Never, which I find shocking.

Two days ago, I purchased a home test kit for gluten which gave a strong positive result. To double check the result, I've booked a blood test with my Doctor for confirmation.

What really infuriates me, is that if I had been tested right at the beginning of all this, I could have lived a near normal life, kept my career and reduced the hellish suffering that this nasty condition brings.

I now wonder how much damage has been caused to my body. I often see undigested food in my waste, I often smell the acrid stench of bile and see either orange, bright green or even near black stools.

Thank God, for the simple home test that may be about to change my life and stop me feeling like some kind of hypochondriac due to the amount of different issues experienced by the body, all decreasing and reducing a good quality of life.

I just wanted to outline my story in the hope that it may help others who may still be undiagnosed but who have never been tested for Celiac or gluten intolerance. 

My regards and best wishes to you all

Marcos

 

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I could have written this story myself. I am 74 and lived a life of misery...14 major surgeries and 10 autoimmune diseases. I have permanent damage to my spine from scoliosis and AMD in eyes. I read that all of these are gluten related. The lack of nutrients to my body has caused so much but I am grateful to have discovered that it is this little powder gluten that I need to avoid for life to be a healthier human. Who reads the fine print that says "gluten" is a problem...it's been there in every health article forever along with milk and dairy but who really believes it?

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