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Recently Diagnosed Celiac


Mgyoung77

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Mgyoung77 Apprentice

I was informed of my celiac diagnosis this past Thurs. the doctor said you have celiac, avoid gluten as soon as you walk out this door or it can lead to lymphoma, I want you to do a capsule. He then sent me on my way. To the best of my ability I have avoided gluten. I still feel miserable today from a cold that has been lingering in my house. However, I have been starving. It's like I can't get enough to eat today. BeforenInstarted going gluten free, I had very little appetite. Has anyone else experienced this?


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Adalaide Mentor

When I first went gluten free I started eating like a HIPPOPOTAMUS! I was so hungry all the time. Eventually this faded and I have a normal appetite now. You'll notice you go through a lot of changes, your body will begin healing and you may go through all sorts of stages between now and health. I sure did, heck I'm still on that path.

Welcome to the fold. Be sure to check out the newbie topic to help you find your way. We all understand that this is a trying time and that topic is there to help you find and stay in the straight and narrow, as it were.

nvsmom Community Regular

Welocme to the board.... but sorry to hear of your diagnosis.

I ate a fair bit at first but I'm not sure if it was because I was hungrier or I felt deprived so I ate more to prove I wasn't. I ate a fair bit of junk at first and then I tapered off. Now (5 months later) my appetite is actually a bit down.

Best wishes settling into the new diet. Hang in there, it gets pretty easy after a couple of months.

Takala Enthusiast

Celiac causes malnutrition..... your body just woke up to it.

Try eating more good fats, such as olive oil, coconut products such as coconut milk, nuts, avocados, etc, and more protein, less carbohydrates. That will help keep your blood sugar from going on a roller - coaster. Also, taking a B vitamin complex and a calcium/D/magnesium supplement helps.

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    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
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      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
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      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
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      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
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