Celiac Disease and Weight Loss

[nb888]

Hi folks

Diagnosed with Celiac around 4 months ago after quite a few months of symptoms, 40 year old male, about 5 ft 10.

Since the last few months of eating a gluten-free diet I've been losing weight from around 9st 7 ish to around 8st 10 today. Always on the slim side, seem to have a fast metabolism, eat a lot (healthy food, fresh fruit and veg, nothing much processed) never able to gain weight. I work from home and make all food from scratch, food for a typical day might be fruit in the morning, gluten-free pitta with humus for lunch plus a home made salad, dinner might be a generous portion of fish or meat plus home made pasta dish with cheese then large tub of yogurt in the evening. 

Typical exercise is yoga twice a week plus we rent some land to grow fruit and veg so at least 10 hours per week lifting carrying etc etc. In lockdown due to covid at the minute but normally would also go hill walking at the weekend so quite a healthy lifestyle. Feel fine healthwise, no problems. Don't smoke, don't drink.

I don't know why I am losing so much weight, all I have really changed is normal bread for gluten-free bread which I have 2 - 3 times per week, never really ate anything else containing gluten.

Can anyone make any suggestions on what type of diet I could follow or any diet or lifestyle changes I should make?

 

[Kellyjall]

Give it time. Once your body has repaired itself and starts absorbing the nutrients it has been missing... you will most likely gain weight if you are not careful. I was about a year post diagnosis when my scale began to rise. 

It was frustrating because that is the first time in my life I had to really watch what I ate. 

Good luck! 

[trents]

So that is a weight loss of around 13 lbs? Sorry, not familiar with stones as a unit so had to rely on a conversion tool. What is the second number after the stone? 9st 7 ish. Is the 7 in ounces or is that 9.7 stones?

This is odd as your caloric intake seems not to have changed much according to what you say. It is not uncommon for people to lose weight after going on a gluten-free diet since that usually means eliminating a lot of starchy wheat products but that doesn't apply in your case. One thing to be aware of is that commercially made wheat bread and wheat pasta generally contain vitamin supplements, particularly niacin and sometimes other B vitamins (at least here in the U.SA.), whereas gluten-free replacements generally do not.

With you having only recently gone gluten-free, it is possible that your body is going through some kind of adjustment phase. Healing of the small bowl villi can take years even after going gluten free and even after villi recovery you may never have completely normal nutrient absorption as so-called "leaky gut" may and likely still be an issue.

Having said all that, it might be a good idea to get a checkup and blood work done in case there is a medical problem not related to Celiac Disease.

 

[cyclinglady]

Welcome!  

Four months in.  Have you had your celiac antibodies retested?  This can give you an indication of whether or not you are on the path to healing.  Follow-up testing can occur the 3 or 6 month mark (annually after the first year).  You should also be checked for vitamin and mineral deficiencies.  

Your diet sounds good with plenty of vegetables, but perhaps you have subconsciously reduced your calorie intake just enough so that your recovering body (which may not be able to process at 100%) can not keep up.  

I personally adhere to a real foods diet that emphasizes fats (helps with insulin resistance).  Consider increasing your calories and testing to see if your celiac antibodies are on a downward trend.  

[nb888]

Hi all and apologies for not responding sooner! Yes 9 st 7 is indeed 7 ounces.  

I thought it might be useful to give a quick update on things.

So after posting in June my weight seems to have stayed roughly the same, the interesting thing is that my waist is slimmer by about 1 inch than when I posted in June and so I seem to have gained more muscle mass in the upper body which I guess is due to a lot of exercise and working out.  Have been out and about doing a lot of fitness stuff this summer!

I have been trying to eat a lot of fatty foods eg meat with lots of fat, high fat sheep yogurt, full fat cheeses etc,  this is probably not great longer term from a health point of view but just need to get some fat / weight back onto me in the short term. I think it has helped in the sense that I have not lost even more weight. It has been difficult to balance enough intake with having enough appetite, feels sometimes like I am forcing myself to eat more than I normally would.

The "typical" newly diagnosed celiac symptoms of a stomach ache and bloatedness amongst other things are still present, perhaps marginally improved from June and there is no longer any chest / rib pains which is good.

I am not sure about the antibodies part but I did have another follow up routine blood test which apparently was all fine. I have a call booked in a couple of weeks with an Allied Healthcare Professional, this is booked through the NHS (I am in England) as part of the service for newly diagnosed celiacs. Because of the lockdown situation it has been very hard to get any face to face appts and I am surprised I was able to get a blood test done.

I have heard of FODMAP and to be honest haven't really given it the attention it deserves, it might be useful to see if cutting out certain "trouble" foods might help in general with the healing process.

So there we go, hope that things will continue to improve and I may eventually even gain some weight!

 

 

[Scott Adams]

It's great to hear that you're health is improving. If a higher percentage of the calories you are eating come from fat and protein, it will make you leaner (this is the formula for the Atkins diet). To increase your weight one typically needs to increase the percentage of carbohydrates in their diet, but many carbs are not healthy, so proceed with caution if you go this route.

The FODMAP diet would really only be necessary if you still had gluten-like symptoms, but are 100% gluten-free. So celiacs who don't fully recover on a gluten-free diet alone may find relief on a FODMAP diet.

[charks]

Your post is very similar to my post yesterday. I lost 30 pounds in my first two months of being gluten free. Although it was nice being able to get into my old clothes I started to worry about how quickly I was losing weight. At this point I was still trying to eat what I thought was a healthy diet. Then I read a post by cycling lady. I changed my diet to include more protein and fat. I am still losing weight although I eat loads. About a pound every 3 weeks or so. I hope as my villi heal this will gradually stop.

[nb888]

Update - After a lot of messing around with different diets I finally figured out this has been caused by my eating (gluten free) oats. Cut those out with significant results. I have realised I will never be back to my original weight but I've finally stopped losing weight and have broken the cycle of not wanting to eat because of stomach pains resulting in losing more weight etc ... 

[Scott Adams]

@nb888 thank you for the update! Others will find this helpful as well. I know that according to research ~9% of those with celiac disease also cannot tolerate oats (avenin) protein, even if they are gluten-free oats.

[Celiac Disease Symptoms]

On 6/2/2020 at 3:28 PM, nb888 said:

Hi folks

Diagnosed with Celiac around 4 months ago after quite a few months of symptoms, 40 year old male, about 5 ft 10.

Since the last few months of eating a gluten-free diet I've been losing weight from around 9st 7 ish to around 8st 10 today. Always on the slim side, seem to have a fast metabolism, eat a lot (healthy food, fresh fruit and veg, nothing much processed) never able to gain weight. I work from home and make all food from scratch, food for a typical day might be fruit in the morning, gluten-free pitta with humus for lunch plus a home made salad, dinner might be a generous portion of fish or meat plus home made pasta dish with cheese then large tub of yogurt in the evening. 

Typical exercise is yoga twice a week plus we rent some land to grow fruit and veg so at least 10 hours per week lifting carrying etc etc. In lockdown due to covid at the minute but normally would also go hill walking at the weekend so quite a healthy lifestyle. Feel fine healthwise, no problems. Don't smoke, don't drink.

I don't know why I am losing so much weight, all I have really changed is normal bread for gluten-free bread which I have 2 - 3 times per week, never really ate anything else containing gluten.

Can anyone make any suggestions on what type of diet I could follow or any diet or lifestyle changes I should make?

 

Hello,

Just recently diagnosed with celiac disease. I am losing about 1 pound every 2-3 days, so far I’ve lost approximately 25 pounds which if I were actually trying to lose weight would be phenomenal because I DO NOT lose weight easily.  However, I think at least 10 pounds of my weight were due to bloating/fluid retention because I seem to be urinating more often than before my diagnosis. Good luck 🤞 with your celiac issues, it is certainly a never-ending challenge so far (diagnoses 3 months ago). 
 

I do have an unusual feeling following the nausea and vomiting, I become extremely flushed and sweat profusely for about two minutes after the vomiting phase….

Hope this helps.

 

 

[trents]

1 hour ago, Celiac Disease Symptoms said:

I do have an unusual feeling following the nausea and vomiting, I become extremely flushed and sweat profusely for about two minutes after the vomiting phase….

I think that's pretty normal. That's my experience as well when I get glutened.