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Newly Diagnosed With Celiac

foofangirl

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foofangirl Newbie
foofangirl
Posted

I am newly diagnosed with Celiac Disease and this forum has given me so much hope, I feel like crying from happiness! I'm not crazy, I really am sick, and I can help myself at last! My question is this: When do you begin to feel 'normal' ? I know everyone is different and I have only been gluten free for two weeks, but I still feel like someone beat me up every morning, no matter how much sleep I get. My hip, elbow, shoulder and wrist hurt all the time. However, the gastronomic issues are much improved and for that I am so grateful. Am I still exhausted all the time because I am ingesting hidden gluten or does it take time for the aches, pains and crushing fatigue to subside?

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Christine0125 Contributor
Christine0125
Posted

I am newly diagnosed with Celiac Disease and this forum has given me so much hope, I feel like crying from happiness! I'm not crazy, I really am sick, and I can help myself at last! My question is this: When do you begin to feel 'normal' ? I know everyone is different and I have only been gluten free for two weeks, but I still feel like someone beat me up every morning, no matter how much sleep I get. My hip, elbow, shoulder and wrist hurt all the time. However, the gastronomic issues are much improved and for that I am so grateful. Am I still exhausted all the time because I am ingesting hidden gluten or does it take time for the aches, pains and crushing fatigue to subside?

I am fairly new too. I had a positive blood test in February. My doctor said an average of 6 months to heal. I'm currently back on gluten temporarily as I have an endoscopy scheduled next week but I was gluten free for about 2 months and while I noticed improvement in the nausea that was about it. I still was getting the muscle cramps, headaches and some gassiness. I just had about 8 viles of blood drawn today to test all my vitamin levels. I'm hoping to start seeing more improvement after I figure out what supplements I need to take.

I felt much like you... I wasn't depressed with the diagnosis, I was so relieved to have an answer.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I am newly diagnosed with Celiac Disease and this forum has given me so much hope, I feel like crying from happiness! I'm not crazy, I really am sick, and I can help myself at last! My question is this: When do you begin to feel 'normal' ? I know everyone is different and I have only been gluten free for two weeks, but I still feel like someone beat me up every morning, no matter how much sleep I get. My hip, elbow, shoulder and wrist hurt all the time. However, the gastronomic issues are much improved and for that I am so grateful. Am I still exhausted all the time because I am ingesting hidden gluten or does it take time for the aches, pains and crushing fatigue to subside?

It takes time. Your recovery time will be influenced by how much intestinal damage you have, your age, your state of health in general, how long you went unDXed, and whether you have vitamin deficiencies. Some people take months..some can take years.

Be sure you have searched for any hidden gluten and give yourself time. Do things that are relaxing and give you joy. Maybe reading, long baths, listening to music, going for walks, watching movies, etc.?

Be alert and watchful when selecting your foods, but do your best to get Celiac off your mind so you can relax at other times.

Best wishes!

BabsV Enthusiast
BabsV
Posted

I think everyone will have a different answer...depends on how long you were sick, how much damage your body sustained, what your symptoms were, how you heal, how strict you are on the diet, accidental glutenings, etc.

The doctor who did my biopsy told me, when she gave me the results, that I was to give the diet 3 months for ANY hint of improvement and 6-12 months for any real noticeable improvement. Then up to 2 years strictly gluten-free to see my blood tests return to normal (hopefully!)

I am almost 8 months gluten-free and while much improved I am still not 100%. I've lost the brain fog, the exhaustion, the tremors, the crankiness, the overwhelming anxiety plus I've put some weight back on (I lost a scary amount before diagnosis.) My nails and hair are growing and stronger and my skin no longer looks like paper.

I am still not back to my 'before' level of energy but some days I get close. I still have some serious abdominal pain issues (the doctors are finally starting to look at things other than Celiac Disease as possible causes...FINALLY!) My sleep is still not great -- I blame that partly on an anti-anxiety medicine they put me on before my diagnosis (they were at the "it's all in your head" stage of diagnosis) which I've finally just weaned off of AND stress (I am an American living in Poland and dealing with Polish health-care which is erm, different than the Western level of care I'm used to dealing with -- I will return to the States this summer however so I'm hopeful that will help things overall.)

You need to be patient. Some people seem to 'heal' within days and some of us take much much longer. When I'm having a bad day I try to remember that before my diagnosis I was in much much worse shape.

Oh, forgot to say that my 6 month blood tests show a significant drop in antibodies which means it is working even if I don't feel that way some days!

foofangirl Newbie
foofangirl
Posted
  • Author

Thank you all so much for the quick replies! It helps so much to know that I am not alone, I love this resource! I'll try to remain calm, now I know it will take time to feel normal. I have an appointment with my doctor on Monday to go over my test results and take blood samples, I'll list the results for feedback. Thank you, Thank you, THANK YOU ALL!

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Thank you all so much for the quick replies! It helps so much to know that I am not alone, I love this resource! I'll try to remain calm, now I know it will take time to feel normal. I have an appointment with my doctor on Monday to go over my test results and take blood samples, I'll list the results for feedback. Thank you, Thank you, THANK YOU ALL!

This might sound weird..but write down a list of your symptoms when you were at your worst. If you're having a day where you're feeling anxious that you aren't healing..look at your list. I think you will be surprised to see that some symptoms have disappeared..or gotten less intense? It helps you realize you are making progress.

inspired421 Newbie
inspired421
Posted

Thanks, everyone for this thread. I am on day 8 of eating gluten-free and it's intense. My doctor told me it would take at least 2 weeks for my body to be free of gluten. Then it will take time for my body to heal, as several people have already mentioned here.

I feel like a drug addict or alcoholic who wants just one small hit! I'm going to search for threads about people going through withdrawal. I wish I could check into a rehab center :huh:

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    • SamAlvi
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      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
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