Newly diagnosed

[Patsul]

I have just had my biopsy results that show I have stage Marsh 3a coeliac.  I am wondering how long I have had coeliac disease to have reached stage 3.  Also is there anything I can do to relieve the increased gas I am experiencing since going gluten free.  Thank you

[trents]

Welcome to the forum, @Patsul!

There is no way to gauge how long you have had celiac disease from the Marsh analysis alone. A better gauge would be the timing of the onset of symptoms. But even then, there can be a significant delay between the onset of the disease and the appearance of recognizable symptoms. Many celiacs are "silent" for years until the damage to the small bowel villi gets to an acute stage.

As to the gas problem, are you eating a lot of processed gluten free facsimile foods since going gluten free? They contain a lot of polysaccharides like xanthan gum that are hard to digest and can cause a lot of flatus. 

[cristiana]

Hi @Patsul

I had the very same issue with gas, it affected me at first in my mid abdomen, then moved to the lower left quadrant, so I sympathise!  My gastroenterologist recommended that I went dairy free for a little while.  He suggested giving it 2-3 weeks.  It worked a treat. 

Coeliacs are often temporarily lactose intolerant at diagnosis, because the damage to our guts means our body cannot produce enough lactase, the enzyme that breaks down lactose.  One of the side effects of this can be diarrhea and/or gas.  Once the gut heals, quite often the lactose intolerance passes.  

You might wish to give it a try.  Maybe go completely 'cold turkey', and see how you feel after three weeks.  Then reintroduce slowly.  

I also found products like soya, lentils and certified pure oats  (oats certified uncontaminated by gluten) hard to digest at first.  Listen to your gut, maybe keep a food diary, and you will probably see a pattern emerging.  As our diets are restricted already it can be a bit frustrating at times, but it is worth noting that although we mustn't consume gluten ever again, some of the other foods that might be causing you problems now might well not be an issue in a few months or even weeks, so do try to reintroduce things from time to time. 

A word of caution, however.  A minority of coeliacs cannot tolerate even pure oats in the long term, they get similar symptoms to glutening when they eat them.  Nutritionists in the UK often recommend coeliacs give up oats for about 6 months before trying again, for that reason. I thought I was in that camp but after eight years of trying oats from time to time I finally was able to eat them again.  My gut did take a long time to heal though, I think that is perhaps why. 

Cristiana

 

[Scott Adams]

It's difficult to say how long it took for you to reach this stage of damage, probably years, but now it's time to focus on recovery.

This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet:

• Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet

However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people.

According to this study:

Quote

After an average of 11 months on a gluten-free diet, 81% of patients with celiac disease and positive tissue transglutaminase IgA (tTG-IgA) at baseline will revert to negative tTG-IgA (SOR: C, disease-oriented evidence from retrospective cohort study). The intestinal mucosa of adult patients with celiac disease will return to normal after following a gluten-free diet for 16 to 24 months in only 8% to 18%. However, in children after 2 years, 74% will have a return to normal mucosa (SOR: C, diseaseoriented evidence from longitudinal studies).

This article explores other causes of flattened villi: