Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac And Weight Gain


texastricia

Recommended Posts

texastricia Newbie

Since being diagnosed in June and being completely gluten-free, I have gained 8 pounds. This is enough to make many of my clothes too tight to wear. HELP!

This seems the height of unfairness: my diet is severely restricted from things I love, yet instead of losing, I gain! The nutritionist said I should be encouraged that I was gaining - that it indicated my celia were healing and absorbing nutrients. Easy for her to say .... each morning in the closet I begin the Great Search for something to wear.

Can anyone relate? Does this level off or will I lose some weight eventually? I admit that extreme fatigue has limited some of my physical activity, so this may be playing a part. I am an active person who walks the golf course (with a push-cart) three times a week and attends exercise classes 3/week. I am worn out after 9 holes these days - very depressing. It seems a vicious circle.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

What exactly are you eating? If you're attempting to substitute gluten-free processed foods for the foods you used to eat, yes, you will gain weight. However, if you're eating primarily vegetables, fruits, meat, and dairy, perhaps you need to eat more healthy fats. Yes, that's right--healthy fats! They will help you absorb your nutrients better and are extremely important for the proper functioning of your body. You should be including olives, nuts, nut butters, and organic butter (such as melted and poured over cooked vegetables). You may be interested in investigating the paleo/primal diet as many of us here have done. It's a very healthful diet for anyone, but especially for people with celiac. Also, the weight tends to just fall off with this particular diet. There are many sources for learning more about the diet, but I prefer the book, "Primal Body, Primal Mind" by Nora Gedgaudas. There is also a helpful website, marksdailyapple.com that offers a lot of free information and recipes.

Skysmom03 Newbie

People are different. Many people lose but some do gain. I think it depends on how malnourished you were. If your food was passing without being absorbed that will make a difference. My husband has had in diagnosed celiac for much of his life. He could never get above 145lbs. He wasn't diagnosed with celiac until he almost died from it. He could not eat. It went right through him or he threw it up. He got down to about 110Lbs. His doctor said his one stones were horrid.... No villi at all completely smooth. He went on the die and now 16 months later he weighs and seems to have leveled at 182 lbs.

My son also has it( we checked him because of his dad). He doesn't look celiac at all. Always gained weight easily and at his last drs appt he was 85 lbs. he gained five pounds in two months since his diagnosis. His pediatrician said it is just evident now that even though he showed no signs his body wasn't absorbing as it should ( despite gain a couple of pounds every three months prior to diagnosis, his BMI had been decreasing over the last year....)

Good luck to you just attempt to exercise to balance the new weight gain out.

  • 1 month later...
OleMissLass Rookie

I can completely sympathize. When I first went on a gluten-free diet I lost weight rapidly - about 25 pounds - and felt great. Since then, I've gained all that weight back plus some and feel like I have no energy. Since I've gained so much weight while on a restricted diet, I often cheat on gluten-free. I mean, if I'm going to gain weight anyway I might as well have the foods I want, right?

I'm now trying to start back with a serious and strict gluten-free diet but without substituting special gluten-free carbs. I think many people - including my husband and family - have tried to be very helpful by making and buying me Udi's and other gluten-free brands. But many of these gluten-free products are very unhealthy and don't benefit you except to provide a (less than yummy) substitute for carbs. When I first went on the diet I did not buy or use these substitutes and I think that made a big difference in my initial weight loss. It's going to be difficult to convince everyone that I don't want these gluten-free products since they are trying to be generous and conscientious, but I think it's necessary.

  • 2 weeks later...
GroomieC Newbie

After suffering the symptoms of Celiac for 17 years before being diagnosed, I also jumped drastically in weight after I went on a gluten-free diet four years ago. By the time I was diagnosed in my 30s, I was drastically underweight because I was suffering from severe malnutrition (as my doctor said, I had so few villi that my intestines were akin to pvc pipes), but within six months of going gluten free, I had gained almost 20 lbs. By exercising 6 days a week and watching my diet for the last four years, I have lost about seven of those pounds, which still puts me 13 lbs over what I had grown used to. However, considering that I now have a BMI of 20, I have come to accept my current weight as healthy and "normal" for me now, as opposed to the extreme thinness that I had become used to during the years when my body was slowly wasting. I also bought clothes that fit the new me, which was hard at first, but I have also come to accept that I am no longer the size I once was, and wearing clothes that fit my body makes a huge impact on how I feel about my gluten-free body.

healthyeating Newbie

Hi. I had a colonoscopy 3 years ago when I turned 50. Everything came back negative but I was having a lot of digestive problems. The specialist said "go gluten free". Now 31/2 years later, my symptoms have improved but I still have diarrhea at times and I've lost weight. I am seeing my GP this week, because I'm always tired. I'm taking B12, a multivitamin, Calcium , Magnesium and Vitamin D and a probiotic every day. I eat a good gluten free diet, rich in vegetables, fruit,chicken but obviously I am missing something because I am still tired. Any suggestions?

cavernio Enthusiast

"Since I've gained so much weight while on a restricted diet, I often cheat on gluten-free. I mean, if I'm going to gain weight anyway I might as well have the foods I want, right?"

Wrong. Well wait, are you a diagnosed celiac or have gluten intolerance? Because your look on the outside is really the least of your worries if you are a celiac. I guess if you're on Gluten Free: The Fad Diet it's different and you can do whatever you want. Yes, pie crust whether gluten free or not is packed full of carbs. I often find gluten free breads and crackers to have more calories than wheat-baked goods. They're harder to fluff up, and will always be denser.

"The specialist said "go gluten free". Now 31/2 years later, my symptoms have improved but I still have diarrhea at times and I've lost weight"

What else have you been tested for? Why would they tell you to eat gluten free but not test you for celiac disease??? If what you say about your diet is correct and you ARE a celiac, unless you're eating whole chicken, you're not getting any fat in your diet. Red meat is a good for you when you're malnourished. Bring on the liver!

However, I suspect that your omission of what you do to stay totally gluten free implies to me that you are probably still ingesting gluten regularly. Do you eat out? Do you have a shared kitcken? Are you still using pots and pans and wooden spoons and cutting board etc that you still used 3 years ago? Is your handsoap gluten free? Do you change your handtowels in your home after someone who likely had gluten on their hands uses it? Have you ever knowingly cheated? Do you eat products that may contain traces of wheat? Have you tried going dairy free?

In any case, I would definitely go see your doctor and try and get to the bottom of why you don't feel good. It may not be gluten at all.

Annnd, back to talk about the OP. I too have only gained weight and lost/remained at the same energy level as before I went gluten free 8 months ago. Which was pretty low. I'm trying to get my vitamins tested (friggin impossible it seems, only thing anyone ever tests is iron and B12, which are important, but hardly all encompassing!), and apparently I have yet to actually get a proper thyroid panel despite thinking I'd had one twice now, (lying doctors, labs that choose not to do the work the doctor orders because I don't need it for some reason even though I have no idea who these people are...Go Canada, land of the non-existant healthcare.) It's especially annoying because my husband has lost 40 lbs being gluten free with absolutely no effort, and I just gained back weight. In my case though, I've continued to eat like a pig, (many days food is my end-all-be-all) and my excersise has dropped, so there's no surprise why I gained.

In any case, buy some new clothes and excersise as much as your body tells you to. You haven't said your size, but if 8lbs is enough for clothes to not fit, I'm going to guess you're pretty a small person. You may not like your new appearance as much, but I'd trust your nutritionist and take the weight gain as a good sign. Unless you're feeling worse being gluten free, which you might be because your'e more tired now? And, umm, it's not entirely clear in your post, but you don't have extreme fatigue if you golf and excersise 3 times a week. Fatigued, sure, but I'd save the word extreme for those people who are so tired they can be bed ridden.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Em314 Explorer

And, umm, it's not entirely clear in your post, but you don't have extreme fatigue if you golf and excersise 3 times a week. Fatigued, sure, but I'd save the word extreme for those people who are so tired they can be bed ridden.

I would contest this, as someone who had fatigue as a symptom despite being "active" (exercising regularly). For me, personally, at times I would be able to function OK, and at times I'd have to force myself through the day (more often the latter). And, at times, I would barely be able to function- to the point of struggling to stay awake, or even struggling to stand or move much at all or or think straight. Often I'd start the day off OK and then my energy would crap out severely midway through the day. I would be slammed with brain fog and dizziness and sometimes even be on the verge of fainting. The fatigue wasn't *constantly* at a debilitating level, but it was *frequently* at a debilitating level, and more, it was unreliable when I'd have energy, so it was very difficult to plan to do things, and difficult sometimes to follow through. It sure as heck felt "extreme" to me, and it was sometime scary to the people around me who saw it happen.

freeme808 Apprentice

Em314,

I am the same way. But I've been this way for the last 8 years(started around 17). Doctors could never figure out what was wrong. Blood work fine, blah blah blah. Long story short, I've been trying to get my doc to rule out Celiac. What a mission this has been. I will be going gluten free regardless of the outcome at the doctors.

Im so sick and tired of feeling this way. Im pretty much bed ridden, as when I do stuff around the house for a few hours and try to ignore it, I get really sore from standing for too long. My legs swell. I don't do anything with my friends. Grocery shopping is pain atm. Kinda at my wits end.

K, going off topic of the OP. As for weight gain, I've gained plenty-and no gal likes to gain weight. All this gluten to make sure docs realize its the problem and it's ruining my intestines!(sorry I know Im not gluten-free yet, and that's what the post was about.)

The healthiest diet for anyone, gluten free or not, is one full of fresh veggies, fruit, lean meats, nuts, healthy fats, and no processed foods....just like some of the other posters had mentioned. If anyone wants to lose weight, eating nutritiously and exercising is the only way. Don't go "on" a diet, "change" your diet for life. It's a lifestyle change. :)

pricklypear1971 Community Regular

While many of us can use some improvement on our diet (we all have our goodies, don't we?), I think sometimes we forget there's more to it than food and exercise.

Celiac is an autoimmune disease. They don't know what NCGI is, exactly, but I assume like AI diseases, it affects more than just one body system.

AI is tough on your body. Lots of us are dealing with more than one. AI stresses adrenals and messes up hormones. When those are out of whack, most people gain weight. And as we age, it's naturally harder to maintain or lose weight.

Yes, as we heal we gain weight because we absorb nutrients (and bad stuff too). We may have to adjust our diet. Again. We may also have other issues to deal with like balancing hormones, sugar levels, getting adrenals to function normally, addressing and properly treating thyroid issues....the list goes on.

Many of us develop bad exercise habits while dealing with AI symptoms, because we feel crappy and exercise is beyond "normally difficult". It takes hard work, good luck with medical care and research and healing, sometimes, to help us get to the point where we can achieve "normal" energy levels.

And at the end of the day, we're all different. We all have those hurdles. It's a journey, definitely.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    2. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    3. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    4. - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    5. - Scott Adams replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Reverse Osmosis (RO) Water

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,580
    • Most Online (within 30 mins)
      7,748

    Nyssa
    Newest Member
    Nyssa
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.