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Self-Diagnosed Celiac!

Jem Stone

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Jem Stone Newbie
Jem Stone
Posted

Evening all

 

I hadn't even heard of Celiac Disease a week ago, or Coeliac as it's called on this side of the pond.

 

I'm 44, male and have felt like crap for the last 5 years or so.

 

For this period I have had severe abdominal cramps, and diarrhea on an almost daily basis. Lethargy has also been a constant, along with a fuzzy head and lack of concentration in the mornings.

 

A couple of years of ago two small patches of hair fell out on my head, and I developed rashes on my legs. Both have since cleared up. A couple of weeks ago I started experiencing pins and needles in my hands.

 

Oh,and a lot of tension type headaches as well.

 

I've seen my doctor about all of this, but I still do not have a diagnosis. I put it down to stress (I have quite a stressful job), and lifestyle (15 a day smoker and not enough exercise).

 

I've had an MRI scan for the headaches, pee tests, poo tests, breath tests & blood tests. Nothing has been found.

 

I saw my doctor again last week and I'm on a course of Lactulose syrup, Docusate & Senna until I see him again tomorrow.

 

After the visit to the doc last week my boss asked about my symptoms and said it sounded like I might have Celiac disease. Naturally I googled it and lo and behold, it seems like I've displayed  a lot of the symptoms.

 

I'm not jumping to conclusions, but I'm definitely asking for a Celiac blood test tomorrow morning. 

 

To be honest, I'm at the stage where I want it to diagnosed so I can at last start to take positive action to feel better. Even if the test comes back negative I will be giving up gluten to see what happens.

 

Thanks for listening folks :)

 

 

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notme Experienced
notme
Posted

plenty of us have been misdiagnosed, i'm sad to say :(  keep eating gluten until after you get all the tests you need.  good luck :)

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Make sure to ask for the full panel of Celiac tests - not just one or two.

 

tTG-IgA or tissue transglutaminase-IgA
AGA-IgG or Antigliadin IgG
AGA-IgA or Antigliadin IGA
Total IGA

 

Good luck!

Jem Stone Newbie
Jem Stone
Posted
  • Author

plenty of us have been misdiagnosed, i'm sad to say :(  keep eating gluten until after you get all the tests you need.  good luck :)

Thanks  :)

 

Could I get away with just say, a sandwich a day?

Jem Stone Newbie
Jem Stone
Posted
  • Author

Make sure to ask for the full panel of Celiac tests - not just one or two.

 

tTG-IgA or tissue transglutaminase-IgA

AGA-IgG or Antigliadin IgG

AGA-IgA or Antigliadin IGA

Total IGA

 

Good luck!

Will do, might have to write that lot down and take it with me!

KCG91 Enthusiast
KCG91
Posted

Good luck with the doctor tomorrow. I'm also in the UK and it took three visits before anyone thought to test me and I wish I could track down and hug the locum who thought to test for it! I was just talking to my GP today and she said that there's been a real improvement recently in the diagnosis and management of Coeliac in the UK so I hope you find that to be true. Oh and about eating gluten before the tests - very very important and also, if it's positive, maybe your last gluteny sandwiches/beer/pizzas, so enjoy them! 

Chrisz1000 Newbie
Chrisz1000
Posted

Best of luck with your testing. Be prepared to also ask, or be asked, to go through Endoscopy testing - your GP/consultant will possibly want to supplement the blood test results with biospies taken from the gut. To save some time you could request a referral for an endoscopy right away.

 

If your bloods are clear, however, you will certainly have to go down the biopsy route so be prepared and see if you can get it scheduled right away. There's nothing worse than getting sicker and sicker whilst the NHS put you on minimum 4 week waiting lists.  

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

 

Could I get away with just say, a sandwich a day?

 

From what I've gathered from others, the equivalent of two pieces of bread each day is what you need.

w8in4dave Community Regular
w8in4dave
Posted

Yes I know when you read about Celiac and that lil light goes off in your head, you know like OMG that is sooo me! I did the same thing just to have the Doc say ummm nooo I don't think you have it. So really push for that panel! But even if it is negative , you can still go Gluten Free and see if you feel better. 

MGR Apprentice
MGR
Posted

I was told to have 2 or 3 slices of bread a day- So I had toast for breakfast, bagel or sandwich for lunch, pasta or something like that for dinner- biscuits or crackers for snack, doughnuts a glass of beer - and I got very, very I'll throughout but at the end of 8 weeks thought I was going to die! Good luck!

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