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Am I Celiac or intolerence

Smaug

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Smaug Newbie
Smaug
Posted

Help! Am i Celiac or gluten intolerant? Is the blood test accurate?

Did not know until last week exactly what Celiac & Gluten is until my doctor said he suspected i was suffering from Celiac. However following tests last week for this they have apparently come back as negative, which i really don't understand because it would account for all of symptoms i have detailed below. My doctor has advised that this is not conclusive & the only true way is by means of a small intestine biopsy of the Villi and has refered me to the hospital. Snag is that this appointment could take up to 3 months, also after trying "Gluten free diet" for one week most if not all of my symptoms have reduced or been eliminated and thats just seven days. Is the blood test accurate?

With understanding that if the Villi are damaged by this autoimmune reaction to Gluten (Protein) it causes reduced ability to absorb vitiams, nutrients & i suspect water too, which causes havoc with the entire body.

I Have been suffering for 10 years or more with related symptoms. First started with lactose intolerance approx 12 years ago. For the last two years I have gradually experienced greater symtoms such as: weekly headaches & migraines, severe bloating & cramps of stomach, frequent diarrhoea, excessive belching of gas and bad smelling wind, toilet visits smelly, fatty & oily fat on surface of water, Asthma when exercising (never used to suffer from this until last couple of years), brain fog (reduced brain size from CT scan), poor hydration problems with thirst can not quench, frequent muscle cramps especially when exercising (swimming), poor gums, insomnia, dry eyes.........

Other common possible causes have been eliminated by means of blood tests, stool tests, urine & ultrasound. Understanding from research that all of these symptoms can be associated to Celiac, they have now all been reduced or eliminated after just seven days of Gluten free diet, surely this must been Celiac? is the blood test not accurate?

 

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cyclinglady Grand Master
cyclinglady
Posted

The blood test for celiac disease is not perfect, but it does have a good track record.  So, experts recommend both a celiac blood panel and biopsies (4 to 6 tissue samples) taken via endoscopy.  What blood tests did you have?  The most common screening test (cheap and effective)  is the TTG Iga and the doctor usually orders an IgA deficiency test to confirm that the TTG IgA test is valid.  But many celiac patients (like me!) test negative on the screening TTG IgA test.  The best thing is to get your doctor to order the entire panel:

  • TTG IgA and TTG IgG
  • DGP Iga and DGP IgG
  • EMA
  • IGA and IGG deficiency tests

Finally, an endoscopy is ordered to confirm and evaluate intestinal damage (4 to 6 biopsies).

I would recommend getting copies of your celiac tests.  I know you went gluten free already (one week) but you do have to be consuming gluten daily for the celiac disease tests to be accurate (8 to 12 weeks for blood tests and 2 to 4 weeks for the endoscopy).  You can check with your GI for appointment cancellations to help speed things up.  

Don't take my word from it -- see what the experts recommend:  

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

The endoscopy can catch other things that may be a contributing factor to your symptoms and it establishes a baseline too.  

Good luck!  

 

 

Aubrey24 Newbie
Aubrey24
Posted

Why not just go ahead and try gluten free that's the symptoms I had and my biopsy came back normal but my stomach was inflamed and I was beyond sick two days gluten free and I felt a major difference! I went to ER seven times in a year with my stomach pains being so intense and now I'm bett r and anytime I eat gluten by accident or cross contamination I feel it within thirty mins. Doctors said they believed it was celiac disease but test came back normal but obviously they aren't 100 percent accurate as I definitely have it.

Smaug Newbie
Smaug
Posted
  • Author

Thanks both for your replies, very helpful, especially links. At the time of blood tests I was on a normal diet containing gluten. Will have to go back to doctor to obtain test results. Should I ask him to re test is simple test only done?

Don't know if I could ever now go back on a gluten containing diet for the purposes of the biopsy test with how I'll it has made me, especially now beginning to feel significant benefits. Biopsy test date not yet confirmed, have only just been referred to hospital by doctor. Guess there will be a initial consultation before procedure planned. However the NHS in the uk is good.

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