Possibly Celiac?

[Marina-M]

Hey to all members,

I have been recently sent to get tested for Celiac (UK). Few words of pre-history: had shingles a month ago (right hip only), however after around a month started getting weird parestesya of scalp and face. Got tested for GBS, MS and diabetes- all negative. Meanwhile, tingling progressed to hands and feet. They are really cold daytime and super-hot and kinda swollen (not in Reality) nighttime. Once after work I had a full bag of bread crisps (rye and wheat) and felt like a I had a hot flush, and shortness of breath, the day after diarrhoea and upset stomach, and severe brain fog. My GP sent me to neurologist (on wait list), and if they find no issues on that end, may get me tested for Celiac... Avoiding gluten at present and feeling a bit better, though head and extremities are still tingling at times. 
Would really welcome any suggestions and comments, as I was really healthy 35yo female (gym 3 times a week, cycling, etc), and now feeling like ghost. 
Apologies for mistakes, English is my second language..

[GFinDC]

Hi Marina,

I have some bad news for you.  The tests for celiac disease don't work right if we are not eating gluten consistently each day.  The tests are for antibodies to wheat protein and depend on active antibodies being in the bloodstream.  So it's important to keep eating a small amount of gluten each day until all testing is competed.  Usually the doctors do blood antibody test first and an endoscopy later.

[Marina-M]

5 minutes ago, GFinDC said:

Hi Marina,

I have some bad news for you.  The tests for celiac disease don't work right if we are not eating gluten consistently each day.  The tests are for antibodies to wheat protein and depend on active antibodies being in the bloodstream.  So it's important to keep eating a small amount of gluten each day until all testing is competed.  Usually the doctors do blood antibody test first and an endoscopy later.

Hi GFinDC, 

 

thanks for your comment, I’m aware of that and ready to get back to gluten, as soon as scheduled for celiac disease test... 

[trents]

You need to be back on gluten daily for 6-8 weeks before the blood test and at least 2 weeks before the endoscopy/biopsy if the doc wants both.

[Marina-M]

5 minutes ago, trents said:

You need to be back on gluten daily for 6-8 weeks before the blood test and at least 2 weeks before the endoscopy/biopsy if the doc wants both.

Knowing the speed of UK diagnostics, surely I’ll have enough time

my wait time for neurologist appointment alone is ca 12 weeks  😛 

[GFinDC]

More bad news Marina.    Most people with celiac disease who stop eating gluten for a whole and then start back on gluten find they have worse symptoms on restarting it.  What Trents described is called a gluten challenge, and some people can't finish it.  It may be better for you to find a private doctor to test your blood antibodies right now.

Or stay off gluten forever if you feel better not eating it.  We don't need a doctor's permission to go gluten-free.  And there is not treatment for celiac disease except the gluten-free diet right now.

[cristiana]

Hi Marina

You may wish to check with your doctor but when I was officially diagnosed coeliac in the UK back in 2013 I was told that an official diagnosis would allow me access to a nutritionalist on the NHS as well as regular check-ups (incl. an annual blood test) to check my coeliac numbers, liver function etc, again on the NHS.  I don't think I would have had this support without a coeliac diagnosis.  Also, being officially coeliac has put me in group 6 for the covid jabs.   I have found all of this extra support very helpful and reassuring.

That said, I know a couple of girls who felt so unwell during the gluten challenge that they never had an official diagnosis, so just gave up gluten, and they are doing fine.  

Anyway, as I say, you may wish to check this with your GP.  Also, if you go ahead with the gluten challenge make sure you are eating enough of it - again something to check with your GP.

All the very best

Cristiana

 

 

[Russ H]

A blood test alone is now sufficient to be diagnosed with coeliac in the UK if under the age of 55.

https://www.coeliac.org.uk/about-us/media-centre/news/simpler-diagnostic-process-for-adults/

[cristiana]

27 minutes ago, Russ314 said:

A blood test alone is now sufficient to be diagnosed with coeliac in the UK if under the age of 55.

https://www.coeliac.org.uk/about-us/media-centre/news/simpler-diagnostic-process-for-adults/

Thanks so much for sending this link, Russ, that's very helpful.  

[Marina-M]

3 hours ago, cristiana said:

Hi Marina

You may wish to check with your doctor but when I was officially diagnosed coeliac in the UK back in 2013 I was told that an official diagnosis would allow me access to a nutritionalist on the NHS as well as regular check-ups (incl. an annual blood test) to check my coeliac numbers, liver function etc, again on the NHS.  I don't think I would have had this support without a coeliac diagnosis.  Also, being officially coeliac has put me in group 6 for the covid jabs.   I have found all of this extra support very helpful and reassuring.

That said, I know a couple of girls who felt so unwell during the gluten challenge that they never had an official diagnosis, so just gave up gluten, and they are doing fine.  

Anyway, as I say, you may wish to check this with your GP.  Also, if you go ahead with the gluten challenge make sure you are eating enough of it - again something to check with your GP.

All the very best

Cristiana

 

 

Hi Cristiana,

thanks for responding, I am sure that being officially diagnosed by NHS comes with some additional care perks. GP isn’t too keen to follow Celiac route so far, given full absence of any GI issues (except one day of diarrhoea recently), so will have to wait and see what neurologist says first... 

 

[cristiana]

52 minutes ago, Marina_M said:

Hi Cristiana,

thanks for responding, I am sure that being officially diagnosed by NHS comes with some additional care perks. GP isn’t too keen to follow Celiac route so far, given full absence of any GI issues (except one day of diarrhoea recently), so will have to wait and see what neurologist says first... 

 

Hi Marina

Oddly enough, I had a similar situation in that my GI issues didn't start for a while after my neurological issues manifested, which were migraines, tingling extremities, numb arms on waking and seeing odd things on waking.   I got diarrhea eventually though and that's what led to the tests which led to my diagnosis.  It is frustrating as my mother had osteoporosis and some cognitive issues but in the absence of GI symptoms she was never tested for coeliac disease either.  My gastroenterologist advised me to have all my close relatives tested.  I should have demanded it, rather than suggesting it - and of course it was never done.

I hope you find your neurologist helpful.

Cristiana

[trents]

Still one of the biggest misconceptions about celiac disease, that digestive issues are it's only manifestation, and one embraced by far too many doctors out of ignorance.

[cristiana]

I agree, Trents.  And it isn't for want of publicity.  One of my relatives is a doctor and he has had lots of information about it sent to him, I guess the problem is doctors have so much else to read and to do.

However, I think once a doctor has seen such a case first hand it can make a difference.   My own GP never thought of coeliac disease when I first visited her with all my bizarre symptoms.   My blood tests only showed low iron and a strange result in my liver function tests which didn't point to anything in particular.  Then the GI symptoms began, thankfully, otherwise I might still be undiagnosed!

Some time later I went to see her for something unrelated and she told me that she had just seen a man with low iron and remembering my results had him screened immediately for coeliac disease - and he had it.  

[trents]

25 minutes ago, cristiana said:

I agree, Trents.  And it isn't for want of publicity.  One of my relatives is a doctor and he has had lots of information about it sent to him, I guess the problem is doctors have so much else to read and to do.

However, I think once a doctor has seen such a case first hand it can make a difference.   My own GP never thought of coeliac disease when I first visited her with all my bizarre symptoms.   My blood tests only showed low iron and a strange result in my liver function tests which didn't point to anything in particular.  Then the GI symptoms began, thankfully, otherwise I might still be undiagnosed!

Some time later I went to see her for something unrelated and she told me that she had just seen a man with low iron and remembering my results had him screened immediately for coeliac disease - and he had it.  

Yes, this is what it takes. Either that or physicians who themselves develop celiac disease or one of their immediate family members. Nothing like personal experience to educate.

[Marina-M]

1 hour ago, cristiana said:

Hi Marina

Oddly enough, I had a similar situation in that my GI issues didn't start for a while after my neurological issues manifested, which were migraines, tingling extremities, numb arms on waking and seeing odd things on waking.   I got diarrhea eventually though and that's what led to the tests which led to my diagnosis.  It is frustrating as my mother had osteoporosis and some cognitive issues but in the absence of GI symptoms she was never tested for coeliac disease either.  My gastroenterologist advised me to have all my close relatives tested.  I should have demanded it, rather than suggesting it - and of course it was never done.

I hope you find your neurologist helpful.

Cristiana

Cristiana,

interestingly enough, I was always low on iron, not super-alarmingly low, but still... 

The reason why my GP possibly wants to check other options, is that I also have some  spinal issues (always had - desk job, etc). Did you have any neck stiffness issues down to your Celiac? 

 

[cristiana]

Hi Marina

I've had some very odd neck issues and when I had an MRI once, even to my non-medically trained eyes,  I could see my neck was in a right mess! Vertebrae all over the place.   My consultant seemed to think that was whiplash related - perhaps so.  But now you mention it, long before the whiplash injuries (I've been rear shunted by vehicles twice) I recall as a child I did have terrible issues with pain in my neck which seemed to resolve in my later teens, not sure why.

Whilst I cannot be sure that my childhood neck problems were a coeliac issue, from time to time I get excruciating musculoskeletal pain in my ribs and upper back that I think are related.  I feel winded, I feel like my ribs are on fire etc - and that is often when I'm having some sort of GI flare, due to glutening.  It has been suggested to me by my doctor that it is costochondritis.  That said my costo (easier to write!) also flares up with heavy lifting and wearing a tight bra.   But the pain has sent me to casualty twice as I wondered if it was heart related.

Anyway, if you read this forum you will see musculoskeletal aches and pains are a coeliac thing.

But one important point I forgot to mention,  if you do get an NHS diagnosis you should also be sent for spinal bone density scans, c. every three years to check for osteoporosis.  

Cristiana  

[Marina-M]

Update: after 4 days gluten-free (well - nearly, though I tried to not eat any gluten-containing foods, some stuff I had might have been cross-contaminated), I persuaded my GP to test me for Celiac. I’ve asked her specifically about staying off gluten for several days, and she said that this was too short for antibodies to vanish, given that all my life I used to have gluten...

Anyway, my test was negative! Not sure whether I believed it or not; I’m 2 weeks gluten free now. At first, I had huge improvement in the way I felt. Then one weekend I had couple of drinks with friends (few tequila shots one day, and red wine the other). All was in my house, so non-contaminated drinks or glasses. Sunday night all my neurological symptoms retuned x4, plus pain in upper right abdomen and diarrhoea... Any members had similar experience with alcohol? Kinda sure I had nothing with gluten in. Is it down to the fact that my gut has been already in poor state? 
 

[trents]

You may have developed histamine intolerance. Wines and many foods are naturally high in histamines. If your body does not produce sufficient DAO to break histamines down then you could have problems such as you describe. Also look at SIBO. Both conditions are common in the celiac community.

[cristiana]

If gastritis is part of your problem (I have it as well as coeliac disease) the pain can really be exacerbated by alcohol.

C.

[Marina-M]

5 minutes ago, trents said:

You may have developed histamine intolerance. Wines and many foods are naturally high in histamines. If your body does not produce sufficient DAO to break histamines down then you could have problems such as you describe. Also look at SIBO. Both conditions are common in the celiac community.

Trents,

thanks for your suggestion; red wine was always my drink of choice, but never had such nasty symptoms prior to that... 

guess the solution is cutting down on more foods and drinks?.. Also, there has been no antibodies in my blood meaning that it isn’t necessarily Celiac? 
 

[Marina-M]

1 minute ago, cristiana said:

If gastritis is part of your problem (I have it as well as coeliac disease) the pain can really be exacerbated by alcohol.

C.

Cristiana, 

Thanks, though never had one so far, so would’t even know the feeling... Also, my GP mentioned that there were no clues in my urine, blood or stool tests that would suggest the trigger of my complaints whatsoever - can this be true for Celiac? 

[cristiana]

Just now, Marina_M said:

Cristiana, 

Thanks, though never had one so far, so would’t even know the feeling... Also, my GP mentioned that there were no clues in my urine, blood or stool tests that would suggest the trigger of my complaints whatsoever - can this be true for Celiac? 

Hi Marina

One can have coeliac disease without the antibodies, and that is why sometimes people pursue testing by endoscopy.  A friend of mine had symptoms very suggestive of coeliac disease.  Her blood tests were negative but she decided to have an endoscopy as her father was a coeliac.   In the end the endoscopy was negative too, so she was diagnosed with non-coeliac gluten intolerance.  

Alcohol also upsets her stomach - she too like me has gastritis.

Cristiana 

[trents]

Do you have access to the blood test results and can you post them. We would like to see exactly what tests were run and what the values were. The experience of the celiac community on this forum is that relatively few gen practioners, and more than a few GI docs, are not very knowledgeable about Celiac Disease. And yes, we have forum members whose blood tests were negative but whose endoscopy/biopsy results were positive for celiac disease.

[Marina-M]

15 minutes ago, trents said:

Do you have access to the blood test results and can you post them. We would like to see exactly what tests were run and what the values were. The experience of the celiac community on this forum is that relatively few gen practioners, and more than a few GI docs, are not very knowledgeable about Celiac Disease. And yes, we have forum members whose blood tests were negative but whose endoscopy/biopsy results were positive for celiac disease.

Trents,

I’m getting them when have my GP appointment next; I believe it was iGA etc, and they were within the limits for whatever it is. I suspected GP might have been not the most knowledgeable person about Celiac, just because one simply cannot know every bit about every singe disease! I don’t mind sharing the numbers once I got them, and will update my post then, thank you. 

[trents]

7 minutes ago, Marina_M said:

Trents,

I’m getting them when have my GP appointment next; I believe it was iGA etc, and they were within the limits for whatever it is. I suspected GP might have been not the most knowledgeable person about Celiac, just because one simply cannot know every bit about every singe disease! I don’t mind sharing the numbers once I got them, and will update my post then, thank you. 

Make sure you included the reference ranges. Different labs used different reference ranges.