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Cyberhawk

Possible Celiac? Advice Please

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Hello all I am new to the forums.

 

I am a 32 year old male, since around 2012 I have had ongoing symptoms that at first seemed very unspecific, one I had never really thought much of until now and not actually told a GP is Occasionally - starting in 2012 I would get crazy abdominal bloating and cramp seemingly caused by wind at one time I think near the start of 2012 this was a weekly occurance and the cramps were so bad that I even took pills to make me sleep. When I got these episodes they seemed to last the remainder of the day and all night or there abouts until I had released a massive amonut of wind. I always took buscapan from the chemist to try and combat this but if I didnt take one or two at the start of the cramp pains I was stuck with it for a day. The cramp pain was always felt for a day or two after one of these episodes and always to the right side of my belly button area.

 

As I said I didnt think anything of this other then its wind, I had suffered with GERD on and off for years too, especially when I was more overweight so I thought maybe it was related to that.

 

as 2012 went on I got steadily worst with other symptoms including:

 

Headaches, Excessive Sweating including Night sweating, Dizzyness, I have to admit I am somewhat of a hypochondriac so my mind immediately though brain tumours, anyway I was reassured by my GP tthat this was not the case and this was anxiety related, then during jan/feb 2013 I began to get Neuropathy of my hands and feet, burning, tingling and itching skin this lasted a few weeks before kind of disappearing somewhat but I seem to relapse into these symptoms every so often. Same for my headaches which are always tension type in origin and around my eyes/forehead when I have them it can last all day for weeks on end, I had a period where they actually seemed to disappear for like two months.

 

I have also expeienced:

 

Execessive Saliva

Memory issues

Allergic Rhinitis - which is not hayfever related I still have this in the winter.

Fatigue

 

In Feb 2013 due to the neuropathy smyptoms my GP did a serum vitamin b12 test thinking it might be low, the result was actually high at 790 he basically said its from a diet high in b12 ( I do not take any supplements). This got retested in Sept 2013 and had risen to 880, my GP then decided to write to Haematology to ask for advice on what he could test to check what might be going on, I went on to have various blood testing done last week, all of which has come in normal apart from the following:

 

Serum Vitamin b12 - 808 ( lower then last time)

imunnoglobin A - slighlty high ( dr didnt tell me numbers)

 

GP has now referred me to Haematology, upon googling I see its raised in Myeloma.....but what I am wondering is could this be Celiac related?

 

3 days prior to this blood test I had another bloating cramping episode bad enough to feel the after effects two days later, I also seem to be going to the toilet at least 3 times per day on average with loose stools.

 

My other blood tests appear normal including FBC, CRP, PSA, Liver Function, Thyroid.

Edited by Cyberhawk

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It could very well be celiac disease. If you want to get tested continue to eat gluten and request:

TTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

Total serum IgA - a control test to make sure you have enough IgA for accurate testing, I think you had that done

AGA IgA and AGA IgG - older and less reliable tests

The first three tests test for villi damage. The last is for gliadin sensitivity. If the tests are negative, you could request an endoscopic biopsy, or consider a diagnosis of non-celiac gluten intolerance (NCGI) which has all of the same symptoms as celiac disease except the villi damage, plus it is much more common.

Most celiacs have low B12 but that doesn't mean much diagnostically. I too have high or normal-high B12 whenever I am tested.

Good luck! I hope you find answers.

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It could very well be celiac disease. If you want to get tested continue to eat gluten and request:

TTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

Total serum IgA - a control test to make sure you have enough IgA for accurate testing, I think you had that done

AGA IgA and AGA IgG - older and less reliable tests

The first three tests test for villi damage. The last is for gliadin sensitivity. If the tests are negative, you could request an endoscopic biopsy, or consider a diagnosis of non-celiac gluten intolerance (NCGI) which has all of the same symptoms as celiac disease except the villi damage, plus it is much more common.

Most celiacs have low B12 but that doesn't mean much diagnostically. I too have high or normal-high B12 whenever I am tested.

Good luck! I hope you find answers.

 

 

Thank you for the reply,

 

I dont think I mentioned in my first post that I also have Keratosis Pilaris quite extreme on my arms, legs and back I read this is also a common symptom?

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It could very well be celiac disease. If you want to get tested continue to eat gluten and request:

TTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

Total serum IgA - a control test to make sure you have enough IgA for accurate testing, I think you had that done

AGA IgA and AGA IgG - older and less reliable tests

The first three tests test for villi damage. The last is for gliadin sensitivity. If the tests are negative, you could request an endoscopic biopsy, or consider a diagnosis of non-celiac gluten intolerance (NCGI) which has all of the same symptoms as celiac disease except the villi damage, plus it is much more common.

Most celiacs have low B12 but that doesn't mean much diagnostically. I too have high or normal-high B12 whenever I am tested.

Good luck! I hope you find answers.

 

The blood tests do not test for villi damage.  They test for the presence of antibodies.  Usually, with the presence of antibodies there is also villi damage, but not necessarily.  And there doesn't seem to be much correlation between how high the numbers are on the bloodtest and the amount of damage there is or isn't either.  The only way to know if there is villi damage is to have the biopsy.  Keep in mind the inflammation can come and go, and doesn't always affect your entire small intestine all at the same time, so even the biopsy can show different results over time.

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The blood tests do not test for villi damage.  They test for the presence of antibodies.  Usually, with the presence of antibodies there is also villi damage, but not necessarily.  And there doesn't seem to be much correlation between how high the numbers are on the bloodtest and the amount of damage there is or isn't either.  The only way to know if there is villi damage is to have the biopsy.  Keep in mind the inflammation can come and go, and doesn't always affect your entire small intestine all at the same time, so even the biopsy can show different results over time.

I should have written: The blood tests show an attempt by your body to do damage to your intestinal lining.

When tTG and EMA tests are positive, it means the body is attacking itself. Usually it is successful and there is damage- not always though, as you pointed out.

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I should have written: The blood tests show an attempt by your body to do damage to your intestinal lining.

When tTG and EMA tests are positive, it means the body is attacking itself. Usually it is successful and there is damage- not always though, as you pointed out.

 

My Dr has agreed to test me, I have blood test form here to do whenever im ready, endomysium antibodies and coeliac screen. They are also sending me to a Haematologist with regards to the high b12 and igA.

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My Dr has agreed to test me, I have blood test form here to do whenever im ready, endomysium antibodies and coeliac screen. They are also sending me to a Haematologist with regards to the high b12 and igA.

 

:) I hope the tests are conclusive. The EMA IgA is a good test but I'm glad they are running other tests too.  You can read more about the tests here on pages 10-12: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

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