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 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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,140
    • Most Online (within 30 mins)
      7,748
    KP009
    Newest Member
    KP009
    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

    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
×
×
  • 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.