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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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      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
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      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
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      26F!
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