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Anyone Have First Hand Experience With Unintentional Weight Loss? Or Unable To Gain Weight?

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Good Evening everyone!


So at the moment I'm undiagnosed  (my calprotectin is elevated but dudenum looks flat and colon/tileum are healthy, doctor is trying to test every which way for celiac....)

but for the question:  


Do any of you when "glutened" or before you found out gluten was a huge culprit in symptoms, tend to lose weight unintentionally?

How much weight did you lose before you found out?

How long into recovery before you noticed healthy weight gain?

Are there foods you noticed that made drastic improvements in attempting to gain weight?



I'm 6 months into what has been these mystery symptoms (only 3 months gluten free) and since then I've lost 21 pounds.  Nothing crazy except I'm a guy that has always been smaller framed, to drop down to 138lbs isn't a way to keep a man's confidence going.....


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Before I figured out gluten was the issue, I would go through what I called "episodes" where I would lose weight. I did have stomachaches and so would attribute them to that. Whenever I could, I'd eat very fattening food in order to put the weight back on. That wasn't so kind to my gallbladder but really felt I was in a bit of a race before the next "episode".

Now, I do have the weight loss after I've been glutened. It follows a course of other symptoms.

Up until last week, I had gained 13 pounds since last June (but had gained it probably in about five month's time). That doesn't sound like much but 13 lbs is the difference between emaciated and what many would call healthy. My stomach has become trickier and I'm unable to scarf down food. I have to be respectful of my tummy.

On a different note, my husband knew it would be too difficult for me to do this on my own and stopped eating gluten as well. He lost 38 lbs so fast that I thought I was witnessing Stephen King's "Thinner" in real life. He also reacts to gluten, to a lesser degree, but still. It seems that we are on opposite ends of the spectrum. He lost weight from withdrawing it and I lost weight from eating it.

I'm only 17 months into this. My battle with the weight loss is lifelong so I did not experience an unusual drop in weight that would make me sit up and take notice. Some people recover rather quickly. I remind myself that nothing in nature trends in a straight line. Neither does the stock market. Even when it's trending upward, it is a jagged up and down line.

Good luck!

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yes, dude, that happened to many of us.  my doctor was still scratching his head, telling me i was now so underweight that i would have to go into the hospital to be 'fed' - the celiac was his 'hail mary pass' last stab at what could possibly be wrong with me.  i underwent various other tests to rule out what it wasn't (crohn's, cancer, blah blah) was advised to try gluten free AND THEN tested.  when it came back negative, well, duh, i was already 6 wks or so gluten-free.  in 3 years i have gained back 22 lbs and i would like about 5 more.  the more you heal, the more nutrients you will absorb.  and p.s. that is the shape my duodenum was in when i got scoped.  your doc should make the call  :)  good luck!

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Hey everybody!


Thanks for the replies, nobody in my family except kinda/sorta my mom has any idea what I'm going through, i know others could be going through much worse but it shakes my brains when I haven't got a grasp of what to necessarily do...


anyways,  hello CaliSparrow! Yea I occassionaly get what is a low burning sensation around my belly button, at one point I was completely dependent on proton pump inhibitors to get me through the day, but as of the moment it is very uncommon pain and the doctor has me slowly getting off doses.  I'm in the same comparison when it comes to foods, but with too much protein.  I've currently been depending on EV olive oil, avocados, and almond butter.  i can have extra oil on my chicken or fish, just not too much protein.  Doesn't tend to break down well. 

Did you have to do any testing specific to your gallbladder? 




Your story Notme almost fits me to a tee.  Its always been very easy for me to gain 5 pounds whenever I felt like it, now I'm fighting to keep the same...  my coworkers and friends have gotten to the "how are you feeling? are you OK? crap.  I'm not hunching over in pain but the constant questions I've had to adapt to ignore...  I feel so much better than last year just trying to inch forward again.    I also had taken the ttg iga test a month after going gluten free and came back negative,  he's attempting a complete celiac panel for genetic testing, which sounds like if I'm already gluten free would probably stay as negative.  (which I don't mind, because regardless of what I may have going gluten free has already calmed the viscous terrible symptoms i had last year) 

Are there any foods you are "safe" in eating? kind of comfort food by the tv grub?  I'm looking for things that are easy grabs, which has so far been a push. 


I'll keep you guys posted as I progess in testing......

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genetic testing will be the same whether or not you're eating gluten.  your doc is seeing if you have the 'right' genes to develop celiac disease.  (if they come back positive for the genes, your mom might want to look into getting tested, too.  you get your genes from your parents and if it's celiac she could be the originator of the genes)  allergies are a whole 'nother ball game.  celiac is a genetic, autoimmune disease.  allergies are, well, allergies.  i know how frustrating this can be and all the wrong info can be confusing.  hang in there! 

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