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Has Anybody Been Diagnosed W/out Weight Loss?


mindyandy420

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mindyandy420 Apprentice

I was wondering how many have been diagnosed w/out having the weightloss issue. I understand that weightloss is a symptom but not necessarly.

Thanks guys!


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Puddy Explorer

I had no weight loss. I, also, had no digestive symptoms. I was diagnosed because I had osteoporosis, anemia and was lactose intolerant. My doctor was savvy enough to put that all together and test for Celiac Disease. She thought I was bleeding internally because I was extremely anemic and after nothing showed up during my colonoscopy, she did an endoscopy and ran bloodwork. I am very thankful she is my doctor.

Korwyn Explorer
I was wondering how many have been diagnosed w/out having the weightloss issue. I understand that weightloss is a symptom but not necessarly.

Thanks guys!

I had neither weight loss or excessive weight gain. I had gradual weight gain over 20 years that was attributed to, "You need to exercise more, you need to eat better," etc, etc. Since I have been gluten,casein,soy,starch, and sucrose free I have lost 30# in the last three months. I haven't been able to stop the gradual weight gain for 20 years. just a lb here and there, but I was 185 when I was 19 and three months ago I was 260.

Salax Contributor

I was diagnosed without weightloss.

LDJofDenver Apprentice

I was never one of the obvious wasting-away celiacs. Skinny as a kid, yes, but at time of diagnosis (in my 50s) a good 25 lbs overweight. As I've met more celiacs at local meetings, etc., I've discovered I'm really not the exception. Most were more like me.

darlindeb25 Collaborator

When I was my sickest, I was my heaviest. Many, maybe even half of all celiacs/gluten intolerant are overweight. It always used to state that one symptom was weight loss, now they are finally updating that to state, weight loss/gain.

I lost 60# after going gluten free. I belong to a huge support group, and we get new members all the time, most are not the skinny, malnourished looking type.

Roda Rising Star

I lost 10 lb before my endoscopy (about 1 month) but I think I was worring about it. That said I was overweight before diagnosis, then lost that 10 lb, and after going gluten free have gained it back and a few more. :(


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babysteps Contributor

I had always been very stable in my weight as an adult (toward low end of "normal" range by BMI or gov't weight charts). Then, just before (self) diagnosis, gained 5 pounds that wouldn't go away, then creeping to 7 lbs. Never felt full, no matter how much I ate. And quite bloated.

Lost the 7 lbs in I swear 10 days once I went gluten-free. Actually feel full after I eat. And no more bloat (unless I get glutened).

ang1e0251 Contributor

I was overweight and still am but I have lost 11 pounds this year. At least I can lose now, before it was almost impossible.

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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