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

What Weight Gain ?


BackTalk

Recommended Posts

BackTalk Rookie

Man I wish I had all your weight gain problems, and you had mine. I have been gluten-free now for about 3 years. The way I found out I had c/d was I had gone from 180 lbs to 140 lbs in just a few months. There was a ton of tests and I still kept losing weight. Finally my family doctor ran out of things to test me for. Except for one thing was happening that he couldn't figure out. That was this nasty rash that had found a home on my back side. He said he had seen it in a book somewhere, started the search and found it. That's when I was sent in for the you know what test.

I'm 60 years old, have been blown up twice in Nam while in the Marine Corps, have had 4 heart attacks, and just a year ago went threw 15 1/2 hours of surgery getting shinny new rods in my back from my a@# to my neck. After all this trivial stuff being said, it leads up to this. This Celiac Disease is kicking my butt. I am now down to an average 125 lbs. I take in over 4000 per day, eat breakfast, lunch and most nights 2 and sometimes 3 suppers. On a good day I will shoot all the way up to 130 and weigh in that same night and be back down to 125 lbs. I am healthy and very active even with the nifty new hardware in my back. However, without any meat on my bones (literally) you can feel the rods and screw heads in my back and that's a big oweeee.

I just wanted to jump in here and ask if by chance anyone else here has had this weight loss problem? My doctors won't let me touch any kind of steroid, for obvious reasons.

I have always been able to take care of my own problems but this one seems to have me. It is hard for an ornery old coot like myself to ask for help in a setting like this, but that's what I'm doing here. If there are any ideas floating around here, PLEASE pass them on to me. Not the one I hear all the time, "well you can have my extra 50 lbs". This is just as real, and as big of a problem for me as it is for the folks that have tried everything to lose weight.

Thank you for your input and by the way, My name is Jess

Thanks for listening to my rant.

BackTalk


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



Celiac.com Sponsor (A8-M):



Generic Apprentice

Jess, are you 100% sure you are gluten-free? Have you checked your shampoo, hair gel, toothpaste cremes, lotions. That sort of thing as well? I know you don't eat them, but there is a chance it can get into your mouth via your hands.

You also could be one of the unfortunate people that have permanent damage. I think (not positive) that in those cases they do treat it with steroids.

I do remember it taking me a few years before I started gaining any weight what-so-ever.

BackTalk Rookie
Jess, are you 100% sure you are gluten-free? Have you checked your shampoo, hair gel, toothpaste cremes, lotions. That sort of thing as well? I know you don't eat them, but there is a chance it can get into your mouth via your hands.

You also could be one of the unfortunate people that have permanent damage. I think (not positive) that in those cases they do treat it with steroids.

I do remember it taking me a few years before I started gaining any weight what-so-ever.

Oh yes, I'm gluten-free. Down to the point that the bandages, tape on bandaids, heart monitor patches even tooth picks I special order, the ones that are gluten free. I will bet most of you didn't know that the tape on a simple bandaid had gluten in it. I can take something like a tooth pick and if it has a gluten base it makes me sick.

NoGluGirl Contributor
Oh yes, I'm gluten-free. Down to the point that the bandages, tape on bandaids, heart monitor patches even tooth picks I special order, the ones that are gluten free. I will bet most of you didn't know that the tape on a simple bandaid had gluten in it. I can take something like a tooth pick and if it has a gluten base it makes me sick.

Dear Jess,

Have you ever had your Thyroid checked? You could have an overactive thyroid. Many people have Thyroid issues who have Celiac. I have them. Other symptoms of hyperthyroid include: dizziness, heart palpitations, excessive sweating, nervousness, anxiety, irritability, weight loss, muscle tremors, and double vision. These are just general common symptoms. However, if you have them, it is a good possibility.

Sincerely,

NoGluGirl

confused Community Regular
Oh yes, I'm gluten-free. Down to the point that the bandages, tape on bandaids, heart monitor patches even tooth picks I special order, the ones that are gluten free. I will bet most of you didn't know that the tape on a simple bandaid had gluten in it. I can take something like a tooth pick and if it has a gluten base it makes me sick.

I am one that didnt know bandaids have gluten on them. Im wondering if that is were im getting cc'ed.

paula

BackTalk Rookie

I have my thyroid checked every 6 months and have been on Synthroid for 15 years now to keep it in balance.

Bandaids. About one year into being gluten-free and feeling pretty good, I had an ekg to check on my heart. Before I got out of the Dr's office I was sick as a dog. After some major searching I found a common gluten additave in all tape. The hospital knows about it because you can request the gluten-free patches and they will use them.

jacqui Apprentice
Man I wish I had all your weight gain problems, and you had mine. I have been gluten-free now for about 3 years. The way I found out I had c/d was I had gone from 180 lbs to 140 lbs in just a few months. There was a ton of tests and I still kept losing weight. Finally my family doctor ran out of things to test me for. Except for one thing was happening that he couldn't figure out. That was this nasty rash that had found a home on my back side. He said he had seen it in a book somewhere, started the search and found it. That's when I was sent in for the you know what test.

I'm 60 years old, have been blown up twice in Nam while in the Marine Corps, have had 4 heart attacks, and just a year ago went threw 15 1/2 hours of surgery getting shinny new rods in my back from my a@# to my neck. After all this trivial stuff being said, it leads up to this. This Celiac Disease is kicking my butt. I am now down to an average 125 lbs. I take in over 4000 per day, eat breakfast, lunch and most nights 2 and sometimes 3 suppers. On a good day I will shoot all the way up to 130 and weigh in that same night and be back down to 125 lbs. I am healthy and very active even with the nifty new hardware in my back. However, without any meat on my bones (literally) you can feel the rods and screw heads in my back and that's a big oweeee.

I just wanted to jump in here and ask if by chance anyone else here has had this weight loss problem? My doctors won't let me touch any kind of steroid, for obvious reasons.

I have always been able to take care of my own problems but this one seems to have me. It is hard for an ornery old coot like myself to ask for help in a setting like this, but that's what I'm doing here. If there are any ideas floating around here, PLEASE pass them on to me. Not the one I hear all the time, "well you can have my extra 50 lbs". This is just as real, and as big of a problem for me as it is for the folks that have tried everything to lose weight.

Thank you for your input and by the way, My name is Jess

Thanks for listening to my rant.

BackTalk

Hi Jess,

I don't really have any words of wisdom, but I too have the same thing going on. I keep waiting to wake up one day at 150lbs. (I'm only 5') b/c I eat beef nachos 1-2 times per day, followed by about 2-4 Hagan Daz chocolate with almonds ice cream bars and in between Dove chocolates. This has been going on since ~ January. I went from 122 down to 106-107 in less than a month. On the days I have extra servings of the above I am afraid to get on the scale but when I do I weigh in at 107! I don't get it...

My 2 thoughts are:

I was told I also have "leaky gut", so maybe this is doing it? Were you told you have this?

OR

(Worst case scenario) the big C. I have read that cancer causes you to lose weight too. I pray for all (including us)who are going through what we are experiencing that this is not the case.

If you find out anything please let me know and vice versa...

Take care,

Jacqui <_<


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



Celiac.com Sponsor (A8-M):



num1habsfan Rising Star

It is possibe you are one of us non common Celiac's that can be 100% gluten-free and still lose weight. The only times I rarely gain in when (in my first year) I kinda went on a cheating spree from almost snapping. But since then I have been insanely strict. And honesty, who used to be my dietician told me use extra butter on everything. The only way I can stop losing weight is to follow the extra butter and eat more than I'm hungry enough to eat (maybe even an extra meal). I know its not exactly 'healthy' but its the only thing that works :blink:

I can tell you how it works...I was 162 and dropped to 118 within 2 months when I first got Celiac, then was still new to the cheating took me up to 145 lbs, and right now i'm sitting around 135? maybe a little less (because with my new mystery illness its kept me shrinking).

~ Lisa ~

gfp Enthusiast

Hi Jess....

How long have you been gluten-free? (and how long strictly)

Its totally possible with your age and the extra stress on the body that the villi are not repairing well?

If this is the case then perhaps more easily digestable foods and more frequent foods.. (and no dairy) might really help...

Something like the Sumo diet... :D which is mainly vegetables and rice and sleeping after eating... and 9-10 small meals a day instead of 3 main ones...

RiceGuy Collaborator

One thing that helped me is coconut oil. It takes a digestive "shortcut" of sorts, getting absorbed much more easily than other types of fats. This is due to the MCFAs (Medium Chain Fatty Acids). It makes sense to me to use it, especially considering the reduced absorption due to intestinal damage. Anyway, skipping the rest of the hows and whys, I'd suggest trying a high quality centrifuged coconut oil. It's a solid up to about room temp, so can be used in place of butter, margarine, and in cooking and baking.

Other than that, a magnesium supplement has also helped to increase absorption. So I'd recommend that too.

NoGluGirl Contributor
I have my thyroid checked every 6 months and have been on Synthroid for 15 years now to keep it in balance.

Bandaids. About one year into being gluten-free and feeling pretty good, I had an ekg to check on my heart. Before I got out of the Dr's office I was sick as a dog. After some major searching I found a common gluten additave in all tape. The hospital knows about it because you can request the gluten-free patches and they will use them.

Dear BackTalk,

Your medication could be the cause. Synthyroid could have an opposite effect on some people I suppose. I am having the opposite problem, I am sorry to say. Even when my Thyroid is overactive, I have trouble with losing weight. I have an overgrowth of yeast in my system. That can make you fat or skinny, too. If you have been on a lot of antibiotics, steroids, and a high carb diet, that is a possibility.

Sincerely,

NoGluGirl

JNBunnie1 Community Regular
Hi Jess,

I don't really have any words of wisdom, but I too have the same thing going on. I keep waiting to wake up one day at 150lbs. (I'm only 5') b/c I eat beef nachos 1-2 times per day, followed by about 2-4 Hagan Daz chocolate with almonds ice cream bars and in between Dove chocolates. This has been going on since ~ January. I went from 122 down to 106-107 in less than a month. On the days I have extra servings of the above I am afraid to get on the scale but when I do I weigh in at 107! I don't get it...

My 2 thoughts are:

I was told I also have "leaky gut", so maybe this is doing it? Were you told you have this?

OR

(Worst case scenario) the big C. I have read that cancer causes you to lose weight too. I pray for all (including us)who are going through what we are experiencing that this is not the case.

If you find out anything please let me know and vice versa...

Take care,

Jacqui <_<

Hi Jackie and Jess, I know exactly how you feel. Except for me, I was underweight my whole life, I used to be the girl in high school that teachers would bug me asking if I had an eating disorder. When I got 'sick' (meaning the sudden onset of GI symptoms) I started losing weight even more. I'm 5'7'' and I weighed 105 at one point. Which actually looks even worse on someone like me, who has a heavy bone frame with very broad shoulders and hips.

What made me turn the corner (I'm now 135 lbs with all this wonderful squishiness everywhere, I know, not your normal 22 yr old comment) was a combination of a few things. It took almost two years after I went gluten-free to gain weight properly. I stopped working at a job that stressed me to the MAX, for one thing. I also started adding a whole bunch of healthy fats to my diet, the big ones being organic meat, eggs, and butter. Coconut oil as well. I started taking probiotics religiously, as well as eating organic yogurt every day. But the big thing I did was to STOP EATING SUGAR!!!!! I have always had such a sweet tooth, I used to be on the Toaster Strudel diet before I figured out my celiac. In the past month I have had one (1) serving of ice cream. My body gets pissy when I feed it sugar, I don't know why. Maybe insulin makes people like us lose weight? I learned a lot at the Weston Price foundation website. Hope this helps!

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. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

    2. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

    4. - Scott Adams commented on Scott Adams's article in Gluten-Free Grains and Flours
      18

      Cricket Flour Makes Really Good Gluten-Free Bread


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,542
    • Most Online (within 30 mins)
      7,748

    CC324
    Newest Member
    CC324
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
×
×
  • 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.