How long after going gluten free?

[Joel McK]

Hi all,

I've posted before regarding blood tests and endoscopy. On Friday I finally got my results and the Endoscopy confirmed I have coeliac disease. 

 

I did have gluten Friday morning before my results, but today (Sunday) I'm still bloated and having stomach issues. I'm fully aware it won't go back to normal straight away, but I'm curious as to when I should start seeing symptoms improve. Yesterday I felt great and was hopeful I was on the road to healthy living. Today I feel rotten. 

For those who are recently diagnosed, or those who remember the early days of diagnosis and going gluten-free, can anyone shed a bit of light on the early stages and when to expect gut health to be normal. I've tried looking things up online but everything seems to be about been glutened and not first time gluten free.

Thank you 

[Joycie]

13 hours ago, Joel McK said:

Hi all,

I've posted before regarding blood tests and endoscopy. On Friday I finally got my results and the Endoscopy confirmed I have coeliac disease. 

 

I did have gluten Friday morning before my results, but today (Sunday) I'm still bloated and having stomach issues. I'm fully aware it won't go back to normal straight away, but I'm curious as to when I should start seeing symptoms improve. Yesterday I felt great and was hopeful I was on the road to healthy living. Today I feel rotten. 

For those who are recently diagnosed, or those who remember the early days of diagnosis and going gluten-free, can anyone shed a bit of light on the early stages and when to expect gut health to be normal. I've tried looking things up online but everything seems to be about been glutened and not first time gluten free.

Thank you 

Hi Joel,

To answer your question from my experience, I was undiagnosed most of my life, then at 41 finally a clear diagnosis. I really did not see clear effects for about 6 months. The first few months my body did weird things as it rid itself of gluten. After 6 months, I was so much better in health. I think I was an extreme case. I've been diagnosed 9 years now and still see I am a severe case. 

The reason people mention 'glutened' is that gluten hides itself in so many places most don't realise. It hides in table salt, spices, teas, adhesives on tea bags, in flavoured coffees, in your cast iron or non stick pans...We as Celiacs become those people who read every ingredient on cartons. A CERTIFIED gluten-free symbol is what you need to look for if you don't want any cross contamination from factories.  Then, if you do construction, it can hide itself in sheetrock, in glues.  It is also in some bandaids, lotions, shampoos....So it will depend how sensitive you are to gluten from cross contamination or in the air or on your skin. 

I hope you find relief soon. My sister found relief much quicker than I did. Also, some Celiacs are intolerant to Dairy at the beginning of diagnosis. Just something to  be aware of as a possibly. 

Joycie

[Scott Adams]

The key to a faster recovery is a 100% gluten-free diet, but recovery can still take some time, depending on how bad your villi damage is.

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 has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[Joel McK]

On 2/5/2024 at 4:43 AM, Joycie said:

Hi Joel,

To answer your question from my experience, I was undiagnosed most of my life, then at 41 finally a clear diagnosis. I really did not see clear effects for about 6 months. The first few months my body did weird things as it rid itself of gluten. After 6 months, I was so much better in health. I think I was an extreme case. I've been diagnosed 9 years now and still see I am a severe case. 

The reason people mention 'glutened' is that gluten hides itself in so many places most don't realise. It hides in table salt, spices, teas, adhesives on tea bags, in flavoured coffees, in your cast iron or non stick pans...We as Celiacs become those people who read every ingredient on cartons. A CERTIFIED gluten-free symbol is what you need to look for if you don't want any cross contamination from factories.  Then, if you do construction, it can hide itself in sheetrock, in glues.  It is also in some bandaids, lotions, shampoos....So it will depend how sensitive you are to gluten from cross contamination or in the air or on your skin. 

I hope you find relief soon. My sister found relief much quicker than I did. Also, some Celiacs are intolerant to Dairy at the beginning of diagnosis. Just something to  be aware of as a possibly. 

Joycie

Hi Joycie,

 

Thank you so much for your response. I'm 39 now and believe I've had it for a long time. It's scary where it hides itself. Yesterday alone I was out with my daughter and count find anywhere to eat (I was going to watch a football/soccer game). I bought a UK known gluten safe protein bar and a pack of flavored Peanuts as it didn't mention wheat etc. I then sat with my daughter as she tucked into her pizza and I noticed May contain gluten, so I asked the guy next to me if he wanted the unopened pack of paprika peanuts haha. Its everywhere and it's challenging as someone who's never looked at ingredients before.

 

I've noticed lots of positive changes, especially around the toilet situations. I've also noticed a lot more energy in the mornings. I'm living in a household with 3 gluten eaters so it's a minefield in the kitchen, but I'm using baking paper on the George forman for cheese toasties and I'm putting foil on baking trays when cooking in the oven. It's a bit of a pain but a part of life now.

 

Once again thank you for sharing some of your story. It's really good to hear from others who have been there. 

 

Many thanks,

Joel

[Joel McK]

On 2/5/2024 at 9:09 PM, Scott Adams said:

The key to a faster recovery is a 100% gluten-free diet, but recovery can still take some time, depending on how bad your villi damage is.

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:

 

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

Thank you Scott, 

 

Very interesting and also very true. I'm finding it hard living in a gluten filled household. I've also fount myself twice instinctively trying things without looking (when my kids have passed me a sweet/candy). Both times I was very lucky. I realised almost instantly and checked the pack. But lapses like that will hopefully not occur again. I'm checking everything and using a coeliac app to check barcodes. But I'm not relying on the barcode as I've been told ingredient and may contain warnings can appear at any time and the app may not have updated. I ate out for the first time and was incredibly uneasy. So much so it was hard to enjoy the meal. But the manager took my order, they put stickers where I was sat saying no gluten and everything was cleaned down and cooked separate. It's still a new experience though and it's not a relaxed experience. Where I live we only have one or two exclusively gluten free places but I think they'll be a lot more relaxing. 

 

5 years is a long time but I can imagine it been so. I also think it's near impossible not to have small quantities of gluten at some points due to cross contamination. I've just got to make sure it's through no fault of my own. 

 

One of my daughters has similar symptoms to me so we're getting her tested. If she's positive we're going yo go full gluten frew as a household so that will be easier. I just hope she hasn't got it. At least at such a young age. 

 

Thank you for taking the time and for sharing such good information. 

 

Many thanks,

Joel