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Trying To Gain Weight After Diagnosis


gfreegirl0125

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gfreegirl0125 Newbie

I was recently diagnosed with "undiagnosable" Celiac Disease/Gluten Intolerance. My primary doctor had started me on a G/free diet prior to the testing so they were unable to get a positive with the blood work or the biopsy. Because I had reponded so well to the G/free diet they are confident with the diagnosis.

For years I had been from doctor to doctor, speacialist to specialist. They all said it was IBS-C - Eat more Fiber - Exercise - I tried everything - I basically was ready to throw my hands up - I knew it was more than "IBS" - I was in pain, always tired, thirsty, depressed, I would ravish food almost on the verge of binge eating - I was never satisfied - I was always hungry. I didn't understand.- and then I had lost so much weight - I had always been small but I lost 11 pounds in a month and a half - so I knew there was something wrong and that there had to be an answer out there and so as a last resort I switched primary doctors. She did the routine physical and blood tests - My vitamin D levels were really low - but it wasn't my kidneys, wasn't diabetes, and then she asked if I has ever been tested for Celiac Sprue? I was like what is that? So she explained t ome what is was and she has a GI doctor that works in the same office and scheduled an appointment for me. In the meantime she said to try eating a g/free diet - well I FINALLY felt like myself for the first time in years. I had energy, I was moving my bowels more frequently -

When I went to the GI doctor she said that a lot of times doctors will not test patients for Celiac when the main symptom is constipation - and this leads to a lot of mis-diagnosed patients - Then she continued to tell me that she probably couldn't get a positive on me because I hadn't been eating Gluten but she still wanted to do the blood test, and the endoscopy. But regardless if she could get the positive she was sure that we were on to something - I was in tears in her office! For the first time I had answers! It was a blessing - All these years I would have done anything to feel better - And to think all that I had to do was change my diet -

I have not lost anymore weight since starting the g/free diet and my diagnosis - I am 27, 5'0 and 80 pounds - It is frustrating to not see the scale move - I fight for that 1 pound - I gain a pound - I lose a pound - the doctor tells me not to obsess over the scale that the weight will come - BUT - I am so unhappy with how I look - I don't fit into my clothes and that is frustrating!

I try to stay as positive as possible - The doctors say I should see the scale start to move in the next few months as my body heals and starts absorbing nutrients again -

I just wanted to share my story - if there is one person going through what I am going through - I just want to let them know I understand - It is frustrating, and there is so much information out there that it can be overwhelming - But feeling better and healing is worth all of it -

Does anyone have any advise on how to put the weight on faster or is it a matter of patience at this point?


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ang1e0251 Contributor

First, make sure you are eating enough protein. You need protein with each meal and it wouldn't hurt to have some with snacks too. Then add more good fats to your diet as much as you want. Good fats are dairy fat, you can add a slurp of cream every time you have your whole milk. Add coconut milk to foods and drinks. Eat nuts and avocados. These are all good rescources.

Your body has been starved for a long time. It's using all those nutrients your giving it. Your doctors are right, it will eventually be able to gain but it's replacing its reserves right now.

Be patient and eat well!! Let us know how you're doing. I'm so glad you are finally on the mend.

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    • 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? 
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      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.  
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      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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