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Possible Coeliac

gstewart88

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gstewart88 Newbie
gstewart88
Posted

Hi there,

I am new to this forum and just wanting to ask a few questions :)

I have had long term tummy troubles since getting a bad gastroenteritis as a teenager (now 23y) - intermittent diarrhoea/loose stools, chronic nausea usually after eating, epigastric and pelvic pain, fatigue, gas and 2 episodes of iron def. anaemia.

I have been tested for gliaden, antiendomysial antibodies and tissue transglutaminase and all came back neg. I have also had 3 positive faecal occult blood tests, raised faecal calprotectin and raised CRP.

I had a colonoscopy last year with biopsies and Dr said it was mild Crohns disease. Since moving to a new job I have a new specialist and he isn't convinced it is Crohns after all.

I have recently had another colonoscopy and gastroscopy - the Dr said everything looked normal but the biopsy results still have to come back.

So... my questions are can you have negative blood work but still have coeliacs disease?

Where do others with diagnosed coeliacs get pain? All through abdomen or specific places?

Im starting to get a bit fed up with all this!

Thanks for any help :)

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nvsmom Community Regular
nvsmom
Posted

There are quite a few poeple around here who were diagnosed with the biopsy (I'm not one); it's not that unusual.

I tend to get the pain in my stomach area first (just south of my ribs) and then the bloat is more of a generalized belly area thing. Everyone presents differently though; for instance I had chronic C rather than diarrhea. It really varies.

Have you considered that you have Non-celiac Gluten Intolerance (NCGI)? It's about twice as common as celiac disease, and sufferers have exactly the same range of symptoms as celiacs except for the GI damage. Some researchers are starting to think NCGI is linked to latent celiac disease. The treatment is still the same: gluten-free diet for life.

I do hope you feel better soon and find some answers... That's a long time to feel unwell.

GottaSki Mentor
GottaSki
Posted

Welcome!

Yes, you can still have Celiac Disease with all negative tests. Getting diagnosed with Celiac Disease with all negative tests is not often possible.

There are all types of abdominal pain and digestive problems associated with Celiac Disease. Your symptoms are consistent with either Celiac or NCGI.

If all tests are negative, the best next step is to remove ALL gluten for at least three months (six is better) to monitor symptom improvement/resolution. Elimination of gluten is often the best test for Celiac Disease and the only test for Non-Celiac Gluten Intolerance. As Nicole mentioned only remedy for each is the same - remove all gluten.

Just checking to make sure you've had all necessary blood tests before removing gluten. Did you have a Total IgA or IgG based tests - tTG or Demiated Gliadin Peptide (DGP)?

I hope you are feeling better very soon :)

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    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
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