Weighty Matters-Physical and Psychological Impact-Celiac Disease and Gluten Intolerance

In Part 1, I told you how I was a cheater when it came to implementing the gluten free diet. Today, we’ll go over some mechanisms behind why we see weight gain and weight loss with celiac disease.

There are 2 categories to take a look at-the physical, and the psychological. Both have impact on weight management-the psychological is just as powerful as the physiological. We’ll look at issues in both categories. In parts 3 and 4 we’ll cover steps you can take to positively impact your weight and health.

Not quite accurate scale weight-photo credit crossfire

Not quite accurate scale weight-photo credit crossfire

First, the physical.

Physical reasons behind weight loss and celiac disease/gluten intolerance:

*With celiac disease (gluten sensitive enteropathy), there is damage done to the villi in the small intestine. The damage limits the ability of the intestine to absorb nutrients. With limited absorption, less overall calories and also less vitamins, minerals, etc. Many times a person may feel so sick that they just can’t eat enough to make up for the poor absorption. Worse, they may be eating more of the foods that are actually making them sick without realizing it.

*People can feel so unwell when they eat they just eat less. Less often, and less in amount. Decreased calories.

Physical reasons behind weight gain and celiac disease/gluten intolerance:

*Decreased absorption of nutrients can contribute to people never feeling “full.”
They eat more, in frequency and/or amount. Eventually the calories get absorbed, and it catches up. After diagnosis, there may also be a small overcompensation effect of the gut to absorb nutrition.

*When your gut begins to heal and absorb nutrients, you may find that you gain weight.
The nutrition and calories that was just going thru you before in now being assimilated into your body. This is a good thing from a health standpoint. If you listened to part 3 of the podcast with Shelly Stuart she mentioned how she gained a bunch of weight after her gut began to heal. She had been accustomed to eating large amounts of food because it wasn’t being absorbed. When absorption increased, so did her weight. So she recognized that and scaled back on portions, focusing on quality and nutritionally dense foods. The upshot here-you may have been eating more food than you actually needed before, but some of it was going straight into the toilet. How’s that for a visual?

*The damage and affects of celiac disease may impact the hormones in our gut that control appetite and satiety (the sense of being full.)
2 main hormones are leptin and ghrelin.
Quick definitions per Medical Dictionary.com:

Leptin: hormone indicating degree of hunger: a hormone produced by fat cells that indicates the degree of hunger to the hypothalamus of the brain. (Tells you when you feel full and stop eating. Problems with leptin can lead to eating too much because “I’m full” doesn’t kick on.) Leptin resistance also appears to be a problem, as many obese indivduals have high levels of leptin, but are not recognizing the full sensation.

Ghrelin:a gastrointestinal hormone produced by epithelial cells lining the fundus of the stomach; appears to be a stimulant for appetite and feeding.

A study done in 2005 in Italy using classic symptom female celiac patients (the underweight/malnourished classic) showed decreased ghrelin levels after 2 years of being on a gluten free diet, even though their body mass and fat mass had increased.

Another study completed on children with celiac disease showed leptin levels lower than non-celiac children, which then increased after one year on a gluten free diet.

A study in 2003 showed high levels of circulating ghrelin levels in adults with active untreated celiac disease, and normal levels of ghrelin in those who had been treated with a gluten free diet.

So why does this all matter?

We still don’t know, to be honest. This is an example of how our gut affects our hormones, and especially that as someone who has been newly diagnosed with celiac disease or gluten intolerance, you may feel especially hungry. There’s much more research to be done, and I’ve only begun to scratch the surface of what has already been done. But the take home is that our hormones dealing with hunger and the sense of fullness may be affected, and so may not be too accurate when it comes to saying we’ve had enough to eat.

Which brings me to the psychological impact of celiac disease/gluten intolerance on weight:

*After diagnosis there is an immediate reaction of “What can I eat?”
The gluten free diet can feel overwhelming, with the huge lists of ingredients to avoid. First instinct may be to gravitate toward comfort foods labeled “gluten free,” and the attempt to replicate a “normal” carb based diet with their gluten free substitutes. Unfortunately, this can lead to weight gain. Many gluten free substitutes of ordinarily gluten foods have a higher number of calories. Many times this is due to the need to add additional fats to get a decent “mouth feel” in the product. With the proliferation of gluten free foods in the marketplace (a great thing for choice) also comes an increased need to be aware of the nutritional content and value of what we eat-to look “beyond the gluten free label.” Just because it’s gluten free doesn’t mean it’s good to eat in large quantities.

*There is also a sense of Thank Goodness I can eat without feeling sick!
This can lead to eating an increased volume of food as well-just being so happy that you don’t feel sick any more, and taking advantage of that.

Couple that with the fact that our innate mechanism of knowing when to stop eating because we feel full may be affected (we don’t know this for sure yet) because of some hormonal wackiness, and we’ve got some challenges.

In Parts 3 and 4 we’re going to look at steps you can take to impact your weight in a positive way, whether it’s a need to gain, or a need to lose.

If you have questions/comments/experiences, please leave them below. I like to hear from you-don’t be shy!

If you’d like some personalized guidance, I offer consulting to help you on your way. Or you can contact me.

For more of my nutritional ramblings on implementing a healthy gluten free diet, click here.

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  1. Erin,

    This article just made my day.

    Now I understand why I was overweight as a kid, always somewhat lazy/fatigued and always HUNGRY. I have always had this idea that leptin and gherlin levels might be skewed in celiacs who are not eating gluten-free.

    Thanks for answering another piece of the puzzle.

    Happy Easter!

  2. Erin says:

    Hey Jon-thanks and Happy Easter to you!
    There is so much more to be investigated. And it’s a given that I am making some assumptions which are based on the research. But it makes logical sense-however that doesn’t mean it’s absolutely true. And of course, I can’t access the full texts of these studies. But-it may help to explain the hunger issues that seem to be very prevalent. Sometimes the understanding of why helps when it comes to dealing with something uncomfortable like hunger.
    Glad you liked it!

  3. Jennifer R. says:

    Hi Erin,

    I would like to add a couple of things. For the physical weight gain portion, I have read that up to one third of all celiacs/gluten intolerants also have hypothyroidism. That was the case with me. I gained 30 pounds in 3 months for no apparent reason. I was still working out and eating healthily…or so I thought until I found out I was gluten intolerant! I’m still struggling to get the weight off, which hopefully the meds will help me with one of these days.

    Also, for the psychological part, I had a feeling of “Why me?” after diagnosis. At 28 years of age, I didn’t think I’d have to deal with health problems for another 40 years or so. Having to eat GF put a huge cramp in my social life. I’m sure others have felt the same way. I didn’t eat for emotional comfort, but I can surely understand someone who would, causing them to gain weight.

    Thanks so much for your site. It’s nice to read about living GF healthily!

  4. Erin says:

    Hi Jennifer!
    You are absolutely right-associated autoimmune disorders, including thyroid problems, are very common with celiac disease. I also have Hashimoto’s thyroiditis. Undiagnosed/treated thyroid disorders can absolutely impair weight management. Once hormone levels are optimized, the playing field is leveled and once again the calories are king of the puzzle. Hopefully you have a good doc that can help you and make sure your levels are good. Between that, and eliminating gluten I’m sure you will fell better an be able to lose that weight.
    The “why me?” is common. I’m hoping that we can help change perception-that celiac is actually a gift to ensure we treat our bodies well. It makes socializing a bit more challenging, but it can be done!
    Thank you so much for sharing your thoughts and the kind words. Both are very much appreciated :)

  5. Phylis says:

    So overwhelming that it leaves me with more brain fog!!! I was just diagnosed two days ago and really don’t know what size shoe fits so to speak! I am really fearfull of gaining more weight as when I was diagnosed that seemed to be one of the biggest issues. I had been gaining weight and could not lose any for the life of me and my appetite was way out of control, now I have the diagnosis of Celiac. My question to you would be how do I have a good gluten free diet and beable to shed some of this weight (40lbs). I really don’t need any more anxiety of weight gain. Thanks for listening. WAY TOO MUCH PRESSURE.

  6. Erin says:

    Hi Phyllis!
    OK-DON’T PANIC! :)
    You will be fine. It is OK.
    Your diagnosis is a good thing-now you can move forward. First take a deep breath.
    Having celiac disease does not, by any stretch, mean you are destined to have difficulty losing weight. It just gives you some different guidelines on what to eat-and really that can be easier after all. So, first I’d follow up with your doctor, make sure there are no other conditions you may be dealing with hormonally, any other autoimmune conditions such as thyroid disorders or other intestinal issues/food intolerance.
    Then, make sure you are eliminating gluten. Naturally gluten free whole foods are easiest-meats, veggies, fruits, etc. Start increasing your activity level-move more. Walk. Remember that you may be hungry-but do you have to eat, or do you just want to eat? Read part 3 of this series, and the free nutrition guide for some ideas. Give yourself some time to adjust to all the new stuff. Be gentle with yourself, and understand that 40 pounds will take a bit of time, and that’s OK.
    Take small steps, and implement one change at a time. You can’t expect yourself to make huge wholesale changes all at once and succeed-that’s not being fair to yourself. First-go gluten free, and focus on naturally gluten free foods. Then we can get more specific.
    Keep me posted!

  7. N. Wrigley says:

    Was diagnosed in June/2010 but now have gained the dreaded 15lbs and don’t need it to be anymore. Already have to lose 40lbs to begin with…uugghh! So now I am entering into the stage of constant hunger. Which I will be honest is really concerning me, thanks for answer as to WHY this might be happening. Now I just need to learn how to work with it and get past it. Is it just a matter of “just do it” like the Nike commercial says and get off the couch for cardio/strenth training for 5x a week or because we have this condition is it going to require more?

  8. Erin says:

    Hi there, and welcome!
    Glad the “why” helped a bit, although it doesn’t change anything, sometimes an explanation is helpful.
    To your question, it is a question of just do it-to a point.
    With any weight/fat loss regime, you have to include both dietary changes and exercise, and do it at a level that is realistic and sustainable-FOR YOU. That will vary person to person. The best plan is the one you will stick with long term, because that is what it will take. Both an eating plan and exercise plan.
    Think about what your motivators are, and what you can do to use that to your advantage. For example, in my case, I am not terribly competitive with others, but I am very competitive with myself. So I keep very careful records of my training and always strive to improve. Performance based goals are also really helpful, because if you focus on performance, often aesthetic improvements come along with it.
    As far as it requiring more when it comes to weight control and celiac disease, it does require more of one thing that many of us, myself included, are in short supply of. That is patience.
    Be patient and kind to yourself, celebrate the small victories, and enjoy the process. You’ll get there. The trick is making the road fun and easy to continue on.

  9. Joe Bernard says:

    I’ve experienced, and have been experiencing, the weight loss symptoms you described. However, I eat paleo 90% of the time and rarely cheat with gluten (have been doing so since 2008). I’ve lost ~20lbs four times now in the past three years and am at a low weight again. I’m 5’10 128lbs and 22years old. I find I have no appetite at times and can see undigested food in my feces. How come I still have this problem after being largely GF for awhile?

  10. Erin says:

    Hi Joe,

    At this point I’d definitely follow up with your doc to see if there is anything else going on. With a paleo diet, you are already eliminating most of the common problems, but you just never know. You may also have to tighten that up to 100% compliance with the autoimmune version of paleo, or try something like the GAPS diet even. Definitely follow up with your doc though.

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