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

So Disappointed!


bump

Recommended Posts

bump Newbie

How many of you who are overweight felt like you got the short end of the stick when you found out being overweight was not typical for celiac disease? I had weight problems as a teen, found exercise and became tiny by the end of high school and the first part of college. started to gain weight after college became sick with anemia and was diagnosed in 2001 with celiac disease and gained 50 lbs!!! I did try the south beach diet and felt GREAT!! but if I even get the tiniest bit of gluten then I become ravenous for weeks. I am joining weight watchers and will see if I can get my diet under control while still getting the nutrients and satisfaction we all need from eating. Any advice???

I am so sick of feeling weak. I remember a fitter me that could easy run a 7 minute mile and not jiggle or faint. HELP!!


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



Celiac.com Sponsor (A8-M):



Rikki Tikki Explorer

Hi Bump:

I have the opposite problem, but I tell you some people have thought I was anorexic and that's no fun either. I have even been asked if I did drugs! methamphetamines to be exact. I don't know, does it help at all to know that you are at least healthy?

I suppose I shouldn't of answered this, just trying to help..... :rolleyes:

bump Newbie

It isn't that I am not happy I found out I have celiac disease, truthfully I am happy I found out. I thought I had cancer I felt so lousy. It is just that I have not yet learned to temper the celiac disease with health. Being 50 lbs overweight is definitely not healthy for me. I am glad you responded to my post. I guess the symptoms are discouraging on both ends of the scale. All you can do is love yourself and by doing so encourage your body to comply with your wishes for health.

tarnalberry Community Regular

I'm one who's had more problems trying to lose weight, rather than gain. I find that a lot of it is just how stressed I am, and trying to follow the diet while there are other stressors in your life that suck up your time definitely makes me more stressed. As I see it, there's nothing to it but exercising that willpower - both to not pick up the food (my current addiction is mango!) and to get the exercise.

Rikki Tikki Explorer

That was nice to say bump! :D

CateK Newbie

To support my son (age 14) and make sure we didn't accidently contaminate him, I made my whole kitchen gluten-free and just started making gluten-free foods for the whole family. My hubby sort of rebels from time to time and so he has loaf of Whole Wheat up the cupboard but he's not allowed to use the toaster.

What is amazing to me is that within 10 days of going gluten-free myself, I started losing weight. I had been doing WW since early February and losing in little bits and drabs, but the weight is really dropping now (2 or more pounds a week) and I'm not doing anything drastic. If anything I'm actually eating a little more because the gluten-free breads, etc are higher in fat. I'm working on adapting some recipes so they are gluten-free, taste good and are low fat.

I have energy. I thought having energy was a myth reserved for people who didn't have children.

My bones don't ache at night anymore... and that odd rash on my legs and face is gone... hmmmm.

My bowel movements are NORMAL!

Well, I guess the kid got this disease from somebody... and now I guess I can't blame his father (my ex) anymore... <_<

Honestly, though, I didn't think I had celiac disease because I have always been overweight.

I'm kind of curious about how that works because it seems like we should all be underweight ... could it be our bodies are over compensating for the lack of nutrients by grabbing hold of everything it can get and not letting it go?

KaitiUSA Enthusiast
Honestly, though, I didn't think I had celiac disease because I have always been overweight.

I'm kind of curious about how that works because it seems like we should all be underweight ... could it be our bodies are over compensating for the lack of nutrients by grabbing hold of everything it can get and not letting it go?

Some people are overweight with it and gain instead of lose. Different bodies just react differently to the gluten.


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



Celiac.com Sponsor (A8-M):



  • 1 month later...
PreOptMegs Explorer

I definately gain weight and no matter how few calories I eat, I am stuck at a particular weight. I have learned to read my body really well (I self-diagnosed this disease), and I really feel like my metabolism is in slow motion. Anyone else?

skbird Contributor

I was fine for the first 5 months or so. Then my pants got a little snug. I weighed myself recently and in the last month I've gained almost 10 pounds. Yes, I'm depressed. I'm not sure what the change is - everything got tighter when I had a gluten reaction about a month back, and I thought it was just bloat. But it's been a month now.

In my gut's defense, it's still not 100% so maybe it's still recovering, on some level, from being glutened (a whole month ago!!!) I have added flax meal to my diet again and though I am drinking tons of water, I am constipated every night, but am bordering on loose in the mornings.

I guess things just take their time. I have cut back on some of the treats I was eating and have been exercising a little more regularly but no help yet. Really just want to go back down that 5 poounds so that my belly doesn't bulge over my jeans all the time like it does now! <_<

Anyway, you're not alone in being bummed out about weight. I am currently 155, 5'10" and have gone up and down in my weight over the past 10 years twice now, gaining and losing 70 pounds, then 40 pounds. I loved it when I was 145 but would be happy to be 150.

Sigh.

Stephanie

PreOptMegs Explorer

That is so ironic, skbird. I am 5'10" as well, and this morning weighed 155. I was 149 not that long ago, so it just bugs the crap out of me that I am stuck and cannot go below 155 no matter what. The weight is all located in my lower stomach, so I definately want that to go away!!!

jenvan Collaborator

Bump-

Losing weight and having that feeling of helplessness with your weight is so frustrating. I hope weight watchers is a help to you. However, if it isn't, I would recommend LA Weight Loss. My brother has been overweight for years, partly from health problems, and has never been able to lose weight (having tried everything in the book!). Anyway, he has been doing LA Weight Loss for a while now and has been incredibly successful. From what he has told me, they have a philosophy on health/diet that goes deeper than most weight loss plans. They also use blood tests and medical histories etc to really understand your individual body and what will work for you specifically. If interested, I'd look into it. My brother has learned so much from the program and has made lifestyle changes, not just temporary "diet" changes that will fail him later.

Random thoughts: If you're not in the best of shape like you used to be.... have you tried walking, started light weight lifting, not eating late at night, portion size, not filling up on gluten-free carbs and sugars... ??

Good luck to you. B/c of health issues, and a past eating disorder, my weight has gone up and down over the years. I know it can be frustrating and oftentimes depressing thing to deal with.

skbird Contributor

PreOptMegs - We're twins! That is really funny!!! Well, it's sort of not. I mean we are supposedly in the perfect weight range for our size but mine's all in my belly right now, too, and all my pants are too tight. I'm really not ok with that.

Going low carb has helped me with this before but I'm thinking I must have some thing going on with my gut right now and that is why I'm a little larger at the moment. Why is it always that 5 pounds that is so hard to lose??? :)

Stephanie

luvs2eat Collaborator

I attributed my lack of weight loss to my early diagnosis. I only had diarrhea for about 2 months when I was tested and went gluten-free immediately. When I told people about Celiac disease and they asked me the symptoms... I said, "Unexplained weight loss..." and I'd sort of look down at myself and say, "Um... I didn't GET that one!"

Other people would ask me, when I told them the dietary restrictions, "Oh my... WHAT do you eat." Again, I'd look down at myself and say, "Plenty of stuff!"

I'm not chuckling about it anymore tho. I've gained about 25 lbs. since diagnosis and hate it!! I know that when I was diagnosed, I sort of went off the deep end eating foods I COULD have... like potatoes and rice (risotto is my fav food!!). Now I'm trying really hard to be low carb... more lean meats and fresh fruits and veggies.

UGH!!

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Hmart replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    2. - trents replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      10

      Help I’m cross contaminating myself,

    4. - DebJ14 replied to Jhona's topic in Introduce Yourself / Share Stuff
      30

      Does anyone here also have Afib

    5. - Hmart posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,925
    • Most Online (within 30 mins)
      7,748

    Linda Stark
    Newest Member
    Linda Stark
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
    • DebJ14
      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
    • Hmart
      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative.  I have gone gluten free. In week 1 I had a flare-up that was similar to my original symptoms. I got more careful/serious. Now at the end of week 2 I had another flare-up. These symptoms seem to get more intense. My questions:  1. How do I know if I have celiac and not something else? 2. Are these symptoms what others experience from gluten?  When I have a flare-up it’s completely debilitating. Can’t sleep, can’t eat, can’t move. Body just shakes. I have lost 10 pounds since going gluten free in the last two weeks.
×
×
  • 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.