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Celiac Without Weight Loss?

NancyL

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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).

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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.

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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.

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