Symptoms free after gluten free diet?

[Matt13]

How long did it take for all the symptoms to go away? (Especially abdominal bloating and distension/tension!)

[Scott Adams]

This seems to vary greatly from person to person, and it also depends on how well you maintain a 100% gluten-free diet. 

I noticed some relief within 1-3 weeks, but my diet wasn't ideal and I continued to eat out often after my diagnosis. I don't think I felt like I was fully recovered until around 2 years after my diagnosis.

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.

 

[Matt13]

Thank You for the reply, i am still struggling, maybe IBS is involved also because of stress, or maybe i am also intolerant on other food as well...

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[Pbattle]

I am 64 and was diagnosed with Celiac disease four years ago.  I have been on a very strict gluten free diet and have had very positive results.  Increased energy, able to put on and maintain a healthy weigh for the first time in my life.  In those four years I have had maybe a total of six episodes due to cross contamination.  I traveled to Sri Lanka in 2023 for three months and was triggered four times.  I returned this year for another three months with no episodes.  I made some mistakes due to the language barrier and did eat some products that contained wheat.  However this time I had no reactions.  I am trying to understand why.  Years ago I had a lactose intolerance that created my seasonal allergies.  After changing my diet all my allergies disappeared.  After five years with no dairy products I was able to use lactose products again with no return of my allergy symptoms.  My body seemed to reset itself.  I am wondering if the same may be true for Celiac Disease.  Have I benefitted from being very strict with my diet that my body is now able to tolerate some gluten again or is the use of European wheat in Sri Lanka different from than that of North American wheat products.  Now that I am back in Canada I am reluctant to experiment with eating some gluten.  I will stay with my strict diet for a few more years at least, while this disease is further studied and understood.

[trents]

If the wheat in Sri Lanka were different, you would think it would not have triggered gluten reactions during your first trip, unless, that is, they switched to a different kind of wheat since your first trip. Or, it is possible that the wheat used in some localities in Sri Lanka is not the same as in other localities. 

Concerning lactose intolerance, it is common for that to disappear in the celiac community once the small bowel villous lining has fully healed.

We get reports on this forum here and there of celiacs who seem to go into remission but it often does not last. I wouldn't push it.

[Pbattle]

I don't intend to push it just trying to understand my lack of reactions this time around.  My lactose intolerance change was 20 years ago and not related to my recent celiac disease diagnosis and diet change.  Just wondering if my body is resetting itself again.  

[Joycie]

On 1/3/2024 at 9:43 AM, Matt13 said:

How long did it take for all the symptoms to go away? (Especially abdominal bloating and distension/tension!)

Hi Matt, 

It took my body a good 6 months to have very noticeable improvement. It is well worth it though! So worth it. Cross contamination in restaurants, hidden gluten in products you are eating, and from cross contamination of gluten in factories of things you are purchasing can truly affect a person. Also, if others in your home are not careful with gluten, it will be more difficult to prevent cross contamination. 

I've been diagnosed 9 years at age 41. I have an extreme form of Celiac as I was undiagnosed most of my life. My family continued eating gluten, though it was moved to one side of the kitchen. Years later I made a gluten room for them. About a year ago, the house became fully gluten free. Each stage of clearing out gluten has really helped me. I eat out at very few restaurants because most of them make me sick. Fully gluten free places are the absolute best! "Find me gluten free' is an excellent app for gluten free restaurants. 

Hope you improve soon. It is worth it. 

[Scott Adams]

On 2/3/2024 at 8:52 PM, Pbattle said:

I am 64 and was diagnosed with Celiac disease four years ago.  I have been on a very strict gluten free diet and have had very positive results.  Increased energy, able to put on and maintain a healthy weigh for the first time in my life.  In those four years I have had maybe a total of six episodes due to cross contamination.  I traveled to Sri Lanka in 2023 for three months and was triggered four times.  I returned this year for another three months with no episodes.  I made some mistakes due to the language barrier and did eat some products that contained wheat.  However this time I had no reactions.  I am trying to understand why.  Years ago I had a lactose intolerance that created my seasonal allergies.  After changing my diet all my allergies disappeared.  After five years with no dairy products I was able to use lactose products again with no return of my allergy symptoms.  My body seemed to reset itself.  I am wondering if the same may be true for Celiac Disease.  Have I benefitted from being very strict with my diet that my body is now able to tolerate some gluten again or is the use of European wheat in Sri Lanka different from than that of North American wheat products.  Now that I am back in Canada I am reluctant to experiment with eating some gluten.  I will stay with my strict diet for a few more years at least, while this disease is further studied and understood.

After your gut heals on a gluten-free diet those with celiac disease can go into remission and not have obvious symptoms if they get gluten in their diets, while others may have even more severe symptoms. Both the healing and damage process to your villi caused by gluten can be slow, but if you continue to get regular doses of gluten the damage would very likely come back, along with the symptoms. 

[Pbattle]

On 2/5/2024 at 2:52 PM, Scott Adams said:

After your gut heals on a gluten-free diet those with celiac disease can go into remission and not have obvious symptoms if they get gluten in their diets, while others may have even more severe symptoms. Both the healing and damage process to your villi caused by gluten can be slow, but if you continue to get regular doses of gluten the damage would very likely come back, along with the symptoms. 

Thanks for your comments and knowledge.  Regardless if I have become desensitized from my strict diet, I have no intention of returning to any products that contain gluten.  In my short four years dealing with this issue I have seen a dramatic rise in the availability of really good gluten free products in my mainstream grocery stores.  I am very satisfied with my current diet.  It just means that I can feel a little more confident with travel while still being vigilant as much as possible.  It was very refreshing to travel through the UK recently to be asked at every restaurant if there were any food sensitivities and 99% said they had celiac protocols in place to prep my food.  I would love to see that here in Canada/North America.  I have not been to a single restaurant here in Canada since being diagnosed.