weight loss with gluten free diet

[Julia clark]

My son has lost a lot of weight since going on a gluten free diet. I think he's struggling to find foods and recipes that suit him, so, he just isn't eating enough. 

[cristiana]

Hello Julia and welcome to the forum!

Continuing to lose weight after adopting a gluten free diet isn't uncommon.

It certainly happened to me.  I think I was 10 stone at diagnosis, and my weight got down to about 9 1/2 stone before it crept up again.  My weight is now where it was before I got ill.

Why does this happen?  One reason is your son's gut will still be damaged so the food he eats will not be properly absorbed until it is. 

He may also find himself avoiding certain food because they are giving him symptoms. He may have a temporary lactose intolerance, which might cause diarrhea/bloating, or he may find in the short term certain foods are will cause him pain, such as lentils or peas, for example, which he may well be able to tolerate a few months down the line when his gut is healed.  Keeping a food diary is quite a good way of finding out if there is a particular food is causing issues, sometimes it isn't immediately apparent.

In the case of oats,  your son should make sure if he eats oats, that they are certified gluten free.   Unless the packaging bears the crossed grain symbol, oats can be farmed/processed alongside other cereals which do contain gluten and pick it up that way, although they are actually gluten free in themselves.  That said, 10 per cent of coeliacs cannot eat them, and will never be able to - they bring on similar symptoms to gluten, reacting to the protein avenine instead.  So it is best for your son to avoid oats for 6 months to a year and then try reintroducing them to see if they cause a reaction.

Another reason for losing weight is just that at first it is very difficult to figure out what foods are safe and unsafe, so one avoids eating particular things to be on the safe side.  I wonder if your family lives in the UK - I ask because I am British, and the timing of your post suggests you are in the UK?  If so, I would recommend your son joins Coeliac UK.  They have an app he can put on his phone that will tell him what products are safe to buy, and they also have a gluten-free directory in print.  This will help him navigate his way round the food aisles while he is still learning about the diet.

If your son continues to have symptoms it will be worth speaking to his gastroenterologist again - they might refer/re-refer him to a nutritionist for extra support.  But one common way of having ongoing symptoms is by eating out - something to watch for.  My own experience of eating out in the UK has been a chequered one - I think I have been glutened as many times as I haven't.

Anyway, I hope some of this is helpful, and in the meantime I'd recommend this excellent guide for starters.

Do come back to us if we can help further.

 

 

 

 

Edited June 17, 2023 by cristiana

[trents]

Welcome, Julia!

Cristiana has given some good advice. But let me ask some clarifying questions.

How old is your son? Does he still live at your home? Who does the cooking for him? Has he been diagnosed with celiac disease or with NCGS (Non Celiac Gluten Sensitivity)? I assume one or the other since he is eating gluten free. Is he still having the symptoms that he had which led to his diagnosis? Does he eat out at restaurants frequently? Is he a picky eater to begin with?

[Julia clark]

2 hours ago, cristiana said:

Hello Julia and welcome to the forum!

Continuing to lose weight after adopting a gluten free diet isn't uncommon.

It certainly happened to me.  I think I was 10 stone at diagnosis, and my weight got down to about 9 1/2 stone before it crept up again.  My weight is now where it was before I got ill.

Why does this happen?  One reason is your son's gut will still be damaged so the food he eats will not be properly absorbed until it is. 

He may also find himself avoiding certain food because they are giving him symptoms. He may have a temporary lactose intolerance, which might cause diarrhea/bloating, or he may find in the short term certain foods are will cause him pain, such as lentils or peas, for example, which he may well be able to tolerate a few months down the line when his gut is healed.  Keeping a food diary is quite a good way of finding out if there is a particular food is causing issues, sometimes it isn't immediately apparent.

In the case of oats,  your son should make sure if he eats oats, that they are certified gluten free.   Unless the packaging bears the crossed grain symbol, oats can be farmed/processed alongside other cereals which do contain gluten and pick it up that way, although they are actually gluten free in themselves.  That said, 10 per cent of coeliacs cannot eat them, and will never be able to - they bring on similar symptoms to gluten, reacting to the protein avenine instead.  So it is best for your son to avoid oats for 6 months to a year and then try reintroducing them to see if they cause a reaction.

Another reason for losing weight is just that at first it is very difficult to figure out what foods are safe and unsafe, so one avoids eating particular things to be on the safe side.  I wonder if your family lives in the UK - I ask because I am British, and the timing of your post suggests you are in the UK?  If so, I would recommend your son joins Coeliac UK.  They have an app he can put on his phone that will tell him what products are safe to buy, and they also have a gluten-free directory in print.  This will help him navigate his way round the food aisles while he is still learning about the diet.

If your son continues to have symptoms it will be worth speaking to his gastroenterologist again - they might refer/re-refer him to a nutritionist for extra support.  But one common way of having ongoing symptoms is by eating out - something to watch for.  My own experience of eating out in the UK has been a chequered one - I think I have been glutened as many times as I haven't.

Anyway, I hope some of this is helpful, and in the meantime I'd recommend this excellent guide for starters.

Do come back to us if we can help further.

 

 

 

 

Thankyou so much Christiana for your advice. Yes we are in the UK. He's 35 years old 5.11 and gone down to 9stone 13. 

1 hour ago, trents said:

Welcome, Julia!

Cristiana has given some good advice. But let me ask some clarifying questions.

How old is your son? Does he still live at your home? Who does the cooking for him? Has he been diagnosed with celiac disease or with NCGS (Non Celiac Gluten Sensitivity)? I assume one or the other since he is eating gluten free. Is he still having the symptoms that he had which led to his diagnosis? Does he eat out at restaurants frequently? Is he a picky eater to begin with?

Hi,

    He's 35. He's self diagnosed himself tbh. Since going gluten and lactose free his symptoms have decreased considerably. He lives on his own doing his own cooking. He limits restaurant visits to places that claim to offer gluten-free alternatives. 

[trents]

I wonder if your son's loss of appetite is due to a thiamine deficiency. Wheat flour is fortified with vitamins including Thiamine (B1). Gluten free flours are not fortified. So, when we eliminate wheat from our diets we also eliminate a major source of vitamins. Loss of appetite can be a symptom of thiamine deficiency: https://www.healthline.com/nutrition/thiamine-deficiency-symptoms#basics

Your son should be offsetting this loss with a gluten-free high potency B-complex product and should probably be taking 5000 IU of D3 daily as well since in the UK with it's cloudy weather, most people don't get enough from sunlight.

Edited June 17, 2023 by trents

[Julia clark]

I will most definitely advise him about this possible deficiency. Thankyou so much for your advice.

[eKatherine]

A person can certainly get enough calories eating animal products, vegetables, and fruit. I think he needs to consider that gluten-free products may be highly processed and inferior in nutrition than eating foods prepared from basic ingredients. Mashed root vegetables with butter instead of bread, for instance.