Jump to content

  • 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):

Celiac Without Weight Loss?

NancyL

Recommended Posts

NancyL Explorer
NancyL
Posted

I believe that I "may" have Celiac Disease (won't know until all of the Doctor reports are in)... at the very least there is something that keeps mimicking an appendicitis that keeps happening in my lower stomach/intestines. Since the doc has finished all of her testing and we're just awaiting biopsy results I've decided to do a gluten-free diet to see if it helps at all. I'm tired of relentless E.R. trips with intense stomach pain BUT I have gained weight, not lost it. I have bloating, painful lower quadrants and have had diarrhea every day for over a year and a half (sorry I realize that's tmi but pertinent to my question :unsure: . Yikes The pain comes and goes. When it's "here" it lasts for about 4 or 5 days, gradually increasing up to it's peak and then gradually lessening.

They tested my gall bladder (hida scan, ultra scan, the works), done a ct on my appendix and drawn blood. This last week, I did a colonoscopy and all they found was a small polyp but did a biopsy on it and my intestinal wall (those are the results I'm waiting for). I'm assuming they'll find nothing wrong. I've tried an IBS diet (which is what my gastro doc keeps thinking is wrong but this is extreme for IBS and the IBS diet didn't help). The last test that they "may" do is the endoscopy camera that you swallow that checks (I think) your small intestine.

I had one gastrointestinal specialist say that I have a "depressed intestine" and wanted to put me on the anti-depressant drug of Paxil. What.Ever... I didn't buy that one and switched docs.

My question for you all that have suffered from gluten intolerance, gluten allergy and Celiac's is.... can you have one of these ailments and NOT lose weight but rather gain it?

btw, I don't know if it is important for the question or not, but I'm a mom, am 42 and overweight by about 50 lbs (most of the weight has been gained in the past 2 years and my youngest son is 4 (so not pregnancies fault).

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Yes, you can gain weight with celiac instead of losing it. I have read that it may be because the body goes into starvation mode and packs away every calorie. The reason being that with celiac your intestine is damaged and you can't absorb vitamins normally.

Roda Rising Star
Roda
Posted

Did they do an upper scope as well at the same time? A biopsy from the colon during a colonoscopy will not diagnose celiac. They need to do an EGD and biopsy the small intestine. And yes I didn't loose weight either. I was overweight when I was diagnoed.

starrytrekchic Apprentice
starrytrekchic
Posted

I also gained weight after I started showing symptoms (I'd always been a normal weight). It took years worth of damage--I went 11 years without being diagnosed--for me to start losing weight unexpectedly. My weight's been steady since going gluten free and the symptoms of those 11 years all disappeared, so it was celiac all along--it just initially made me gain instead of lose.

NancyL Explorer
NancyL
Posted
  • Author

Did they do an upper scope as well at the same time? A biopsy from the colon during a colonoscopy will not diagnose celiac. They need to do an EGD and biopsy the small intestine.

Well drat. Thank you for letting me know that. The surgical nurse told me that the biopsy would be testing for things like cancer, colitis and celiac. No they didn't do an upper scope at the same time. When I woke up (I have to have general anesthesia for colonoscopy because in the past I fought them unknowingly) my Doctor said to keep my prep instructions as the next step would be using a camera (that I swallow?) to check out my small intestine. I've had an EGD before but it was due to having a hiatal hernia and I don't believe they were looking at anything but my esophagus at the time (and it was a different doctor).

I didn't mention this earlier but having looked around the site at other posts, I realize that I have many other symptoms such as very frequent headaches, limb pain/achiness and the "brain fog" that someone described. I'm also tired all of the time. I've started taking a zumba class in the hopes of regaining some of my former energy.

Marlie Apprentice
Marlie
Posted

An endoscopy requires that they take samples(6 or so) of the small intestine. Not all damage can be seen which is why a biopsy is required.

NancyL Explorer
NancyL
Posted
  • Author

An endoscopy requires that they take samples(6 or so) of the small intestine. Not all damage can be seen which is why a biopsy is required.

Thanks so much for that info. I'll call my doc on Monday. I'd called her on Friday and her nurse said go ahead and try the gluten-free diet but maybe I should put it off until they do a small intestine biopsy (I'm only entering Day 3 of gluten-free). I don't want to skew the results.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Have they done a celiac panel yet? That would be a good first step if they haven't done one already. Keep in mind that even on gluten you could still have a false negative on both blood and biopsy. I also was the heaviest I had ever been in my life before diagnosis and others have also gained weight as they got sicker so that doesn't rule it out although some doctors will say it does. When you are done with all testing do give the diet a good strict try.

NancyL Explorer
NancyL
Posted
  • Author

Have they done a celiac panel yet? That would be a good first step if they haven't done one already. Keep in mind that even on gluten you could still have a false negative on both blood and biopsy. I also was the heaviest I had ever been in my life before diagnosis and others have also gained weight as they got sicker so that doesn't rule it out although some doctors will say it does. When you are done with all testing do give the diet a good strict try.

I'm not positive that the celiac panel was included in my blood work. Another great question for my doc on Monday. Her nurse is going to love me (not, lol).

I'm reading a lot about false negatives, does that mean that only the biopsy of the small intestine is the only conclusive and reliable way to diagnose Celiac's? Or can that give a false negative as well?

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm not positive that the celiac panel was included in my blood work. Another great question for my doc on Monday. Her nurse is going to love me (not, lol).

I'm reading a lot about false negatives, does that mean that only the biopsy of the small intestine is the only conclusive and reliable way to diagnose Celiac's? Or can that give a false negative as well?

The biopsy can also give a false negative. When your done with testing the best way to know if you need the diet is to do the diet.

MsCurious Enthusiast
MsCurious
Posted

moved to new topic - sorry

sarbee Newbie
sarbee
Posted

I feel your pain I am 50 lbs overweight also and they keep telling me it cannot be because I would be losing. I have the brain fog elevated liver counts, also diagnosed with IBS, diet does not work. I have my scope tomorrow and I never thought i would say this but I am hoping that it comes back saying I have celiacs. I am so tired of feeling crappy.

I have also been to the Er 8 times in the last 3 years with serve abdominal pains and they took my gallbladder and thought it was my appendix. It was not. I just want to feel better and I cannot lose weight no matter what i do. I feel that I am wasting so much money on wieght watchers because the weight will not come off.

Archived

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

Go to topic listing

  • 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. trents
      - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it...
    2. ThomasA55
      - ThomasA55 replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

    3. trents
      - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint...
    4. Joseph01
      - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

      This is way past due for your post. I have Celiac and have been recovering for more than a year. Doing well. Used Essential oil to day to fry some chicken. Read the label all good. Then ate some chicken. Here comes the gluten reaction. I haven't had a gluten reaction since year. I am angry. I have been so careful with this crap and don't wan't any...
    5. ThomasA55
      - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442
    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Iron loss and potential celiac.

      By trents · Posted

      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems.
    • ThomasA55
      Iron loss and potential celiac.

      By ThomasA55 · Posted

    • trents
      Iron loss and potential celiac.

      By trents · Posted

      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      We Keep Getting Glutened With Vegetable Oil

      By Joseph01 · Posted

      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Iron loss and potential celiac.

      By ThomasA55 · Posted

      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
×
×
  • Create New...