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Chris E

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Chris E Rookie
Chris E
Posted

Hi all! I posted here about a year ago when i started experiencing many symptoms that seemed to be similar to that of celiac disease. I have had many tests including blood tests for celiacs and they have all came back negative. I had an endoscopy though not through to the small intestine and colonoscopy which showed nothing. I was experiencing a great amount of tingling down the backs of my legs and an MRI scan of the spine, neck and brain revealed no problems at all.

Over this period i lost over 2 stone in weight (UK) and felt extremely ran down all of the time- constant tiredness. Another symptom was extreme pain in my bones and joins.... down my wrists and arms and in my legs. when this first started i constantly had D everytimje i went to the toilet for about a month before stools then became watery and quite a lot of the time now float in the toilet (sorry about the detial). I have also experienced shingles and recently keep gettin pain around my chest area and breastbone and back area (Im 20 year old male).

Over this period of extensive tests the only positive tests i have had was a white cell scan of my stomach area which revealed an area of potential inflamation in the small intestine and this was followed up with a barium follow thorugh which was clear. I keep asking my doctor about the possibiliy of celiac and she said that because the blood tests are clear it is not a possibility although she has just referred me to a small bowel specialist.

Sorry to go on for so long, but i really can't take feeling like this much more. I keep having periods of feeling well then suddenly rubbish again and again. My family and doctors think i have gone mad and keep being tod i have chronic fatigue and IBS. Anyone got an opinions on my issue ( any help would be well appreciated)

Thank you

Chris (UK)

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Nantzie Collaborator
Nantzie
Posted

I say you should give the gluten-free diet a 100% trial. A lot of people here (including me) had negative blood tests and/or negative biopsy. So you're in good company.

Personally, trying the gluten-free diet anyway completely changed my life. I shudder to think how sick I would be now if I hadn't just given it a shot.

I also think that family members or friends treating you like you're a hypochondriac should be on the symptoms list for celiac. That is SOOOO common around here, it's ridiculous. :rolleyes:

Nancy

Chris E Rookie
Chris E
Posted
  • Author

If i had inflamation in the small intestine that was causing damage to the villi would a barium follow through find celiac disease or would it have to be through scope?

sickofit Newbie
sickofit
Posted
Hi all! I posted here about a year ago when i started experiencing many symptoms that seemed to be similar to that of celiac disease. I have had many tests including blood tests for celiacs and they have all came back negative. I had an endoscopy though not through to the small intestine and colonoscopy which showed nothing. I was experiencing a great amount of tingling down the backs of my legs and an MRI scan of the spine, neck and brain revealed no problems at all.

Over this period i lost over 2 stone in weight (UK) and felt extremely ran down all of the time- constant tiredness. Another symptom was extreme pain in my bones and joins.... down my wrists and arms and in my legs. when this first started i constantly had D everytimje i went to the toilet for about a month before stools then became watery and quite a lot of the time now float in the toilet (sorry about the detial). I have also experienced shingles and recently keep gettin pain around my chest area and breastbone and back area (Im 20 year old male).

Over this period of extensive tests the only positive tests i have had was a white cell scan of my stomach area which revealed an area of potential inflamation in the small intestine and this was followed up with a barium follow thorugh which was clear. I keep asking my doctor about the possibiliy of celiac and she said that because the blood tests are clear it is not a possibility although she has just referred me to a small bowel specialist.

Sorry to go on for so long, but i really can't take feeling like this much more. I keep having periods of feeling well then suddenly rubbish again and again. My family and doctors think i have gone mad and keep being tod i have chronic fatigue and IBS. Anyone got an opinions on my issue ( any help would be well appreciated)

Thank you

Chris (UK)

I did not know all of this stuff was food related until I fasted for 5 days and never felt better in my life! I still could not get well even on celiac diet as my immune system was so messed up. I now cannot eat anything that is artificial-colors, flavors, preservatives, etc. My white cells attack my joints when I've eaten something bad and of course when we have so many things wrong all the docs think we are crazy, mine did too. I was ready for suicide and had all those barium tests that showed nothing wrong. Elizabeth that is on the show The View found she was celiac when she was first on the TV show The Survivor and had to fast for 3 days. Everyone else was weak and she felt wonderful. It is not that hard to fast and I would start there. Shingles is an immune problem too.

nora-n Rookie
nora-n
Posted

Hi

I am in Europe too, and here we recommend biopsy of the small intestine.

I even read a posting here that they somewhere in the London area took 15 samples during endoscopy, following the lates recommendations.

My daughter was negative , both in the biopsies and blood tests, yet she got an official diagnosis of celiac, she had so many typical symptoms and got so much better off gluten. (She had been gluten-free fr some months before going bak on gluten for some weeks and it must have been too short a time back on gluten)

I was back on gluten for 5 weeks and was negative too. I do react very much to gluten. Always negative tests too.

There is a good article in the bmj on this subject, that some can have negative blood tests for ages before they suddenly turn positive, after having the same symtoms for ages.

nora

nikki-uk Enthusiast
nikki-uk
Posted
If i had inflamation in the small intestine that was causing damage to the villi would a barium follow through find celiac disease or would it have to be through scope?

Unfortunately it would have to be through biopsies taken from the small bowel.

I'm stumped why your docs didn't take biopsies of your small bowel when they were in there the first time!! (..but then again... :rolleyes: )

Oh...and for the record - you DO NOT need a positive blood result to have celiac disease.

My husband had neg bloods but villous atrophy was found on his biopsies.

I'm sorry the docs are giving you the run around :( - sadly an awful lot of docs are terribly uninformed about celiac disease.

There is of course nothing to stop you going gluten-free now and not bother with anymore tests.

However, as you're in the UK you will find that no doc will accept self diagnosis and generally take a very dim view of it - you also wouldn't get any follow up care.

Good Luck and I hope things get sorted for you :)

CarlaB Enthusiast
CarlaB
Posted

Did they do a biopsy of the small intestine? Sometimes that's positive after a negative blood test.

You can always try the gluten-free diet and see how you respond to it.

I think you should also consider Lyme Disease. It's what I have and one of my primary symptoms is GI upset. I also have extreme fatigue, joint pain, muscle aches, shortness of breath, heart palpitations, weakness, brain fog, mental confusion, etc. The cyclical nature of feeling well, then bad again is common with Lyme.

Here are a few websites for you to check out: Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, and for testing, Open Original Shared Link (in the states, but you should see who they recommend in the UK for testing).

Keep looking! I've been told all you've been told, too. My last diagnosis prior to finally discovering the Lyme was Somatization Disorder! Apparently it's all in my head! It is NOT normal to feel bad all the time, no matter what the doctors tell you. And you DO have Lyme Disease in the UK ... my Lyme doctor actually has people fly from there to see him!

I do agree with the other poster who mentioned trying the gluten-free diet. I feel much better on it and it helps my GI issues to be gluten-free ... I still get GI issues, but they are much better.

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nikki-uk Enthusiast
nikki-uk
Posted
Hi

I am in Europe too, and here we recommend biopsy of the small intestine.

I even read a posting here that they somewhere in the London area took 15 samples during endoscopy, following the lates recommendations.

My daughter was negative , both in the biopsies and blood tests, yet she got an official diagnosis of celiac, she had so many typical symptoms and got so much better off gluten. (She had been gluten-free fr some months before going bak on gluten for some weeks and it must have been too short a time back on gluten)

I was back on gluten for 5 weeks and was negative too. I do react very much to gluten. Always negative tests too.

There is a good article in the bmj on this subject, that some can have negative blood tests for ages before they suddenly turn positive, after having the same symtoms for ages.

nora

As I said in my post above my hubby has 'seronegative celiac disease'.

My son had symptoms all his life - but his first round of bloods were neg.

When repeated a year later they became high positive without any real change in symptoms - obviously he went on to have positive biopsies.

Incidentally (and it was in a London hosp) 20 biopsy samples were taken.

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