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Newly Diagnosed

olstal04

By olstal04
in Coping with Celiac Disease

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olstal04 Newbie
olstal04
Posted

Hi! I just was diagnosed over a week ago with Celiac Disease. After years of gastrointestinal issues and other bizarre symptoms, I finally found a doc that identified celiac disease from endoscopy and bloodwork (both positive). Unfortunately, as I strictly follow the gluten free diet, I feel worse now than I did before I got diagnosed. My abdominal symptoms are still present as well as weakness (muscle), fatigue, nausea, panic/anxiety attacks, headaches, and loss of desire to do anything. I am unsure if celiac disease is my only problem or maybe there is something else going on in conjunction with celiac disease. I also feel full even when not eating, loss of appetite and sometimes feel horrible immediately after eating. I have insomnia also and sometimes wake up sweaty. I am going back to the gastro doc tomorrow as I am concerned. I feel like I am just barely getting by and unable to concentrate on anything other than my health. I would be interested in learning if anyone else has similar issues or problems. Is it possible that lactose/dairy or soy is causing the problem? I have never been diagnosed with milk or soy allergy although I had a bad reaction to soy milk a few months ago (itching, redness, sneezing etc.). Anyone that may have celiac disease and another auto immune condition or something else. I hope to find some peace of mind.

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JillianLindsay Enthusiast
JillianLindsay
Posted

Sorry you are feeling so unwell, it's a good thing that you are returning to your DR for follow-up. Your GI should run a lactose intolerance test (highly co-morbid with celiac disease) and you can also request an allergy test.

As you have only been gluten-free for a week, it is highly likely that you are still healing and it will take time to start feeling relief. Have you gluten-proofed your kitchen? Replaced your toaster and other high-risk items? It's quite a learning curve and the diet takes a while to get used to. I've been gluten-free for 2 months and am still learning :)

Also, sticking to a very natural diet can help with the nausea and stomach upset. Try very plain, natural foods for a while (i.e. fish with a bit of pepper or something mild, brown rice, raw veggies) while your stomach heals and settles. I wasn't able to eat any highly processed or acidic foods for a while (no tomatoes, gluten-free grain cereals, etc).

I've read other posts like yours so you can be sure that you're not alone. It's good that you are keeping your DR updated on your symptoms. Try to stick to a very strict gluten-free diet (with no cc) and a very natural diet as much as possible and try to be patient while your body heals.

Good luck!

Jillian

Hi! I just was diagnosed over a week ago with Celiac Disease. After years of gastrointestinal issues and other bizarre symptoms, I finally found a doc that identified celiac disease from endoscopy and bloodwork (both positive). Unfortunately, as I strictly follow the gluten free diet, I feel worse now than I did before I got diagnosed. My abdominal symptoms are still present as well as weakness (muscle), fatigue, nausea, panic/anxiety attacks, headaches, and loss of desire to do anything. I am unsure if celiac disease is my only problem or maybe there is something else going on in conjunction with celiac disease. I also feel full even when not eating, loss of appetite and sometimes feel horrible immediately after eating. I have insomnia also and sometimes wake up sweaty. I am going back to the gastro doc tomorrow as I am concerned. I feel like I am just barely getting by and unable to concentrate on anything other than my health. I would be interested in learning if anyone else has similar issues or problems. Is it possible that lactose/dairy or soy is causing the problem? I have never been diagnosed with milk or soy allergy although I had a bad reaction to soy milk a few months ago (itching, redness, sneezing etc.). Anyone that may have celiac disease and another auto immune condition or something else. I hope to find some peace of mind.
ang1e0251 Contributor
ang1e0251
Posted

It's the pits to feel so bad. I'm sorry your having a tough time.

It sounds like you are having some withdrawal symptoms and those are hard on you but they will pass. Your body is trying to adjust and, for now, it doesn't like that you've changed your diet. You just have to tough it out. I would say you probably need some vitamin support also. B complex plus extra B12 (sublingual methyl type), D, magnesium and fish oil.

Allow yourself to eat as much safe food as it wants for now. As the PP said, simple whole foods to start with until you get used to buying and eating this way and you feel better. It's good to lay off the dairy in the beginning. Many of us start out lactose intolerant. Your system needs a break for awhile.

Rest as much as you need. Time is your friend here. Keep posting so we know you are improving.

stellar Newbie
stellar
Posted

I had most of your symptoms as well. I was diagnosed over 10 months ago and still have bad days even though I am extremely careful with my diet. I remember thinking I was going to die because I felt so bad. What I didn't throw up came out the other end like water. I crawled up the stairs in our house because I was too weak to climb them. I kept thinking they had misdiagnosed me even though I was told it could take 2 years to feel better "most of the time". Then slowly I started to feel better (about 3 months into it). Now I have several good days a month, although during times of high anxiety some of the symptoms return. In additions to a high potency multi vitamin, I was told to take Vitamin K and acidophillus (a pill form of the good bacteria found in yogurt). I also lived on bananas and rice for a while, then slowly started to add other basic foods back in. It can be very frustrating, but hang in there!

no-more-muffins Apprentice
no-more-muffins
Posted

Yep, it sounds like you are having some withdrawl symptoms. I went through a similar thing. I was SO tired, anxious, nauseated and would also wake up sweating. I definitely felt worse at first. After a few weeks the bad fatigue and anxiety was gone and after another few weeks I *started* feeling better. It is still up and down and I am about 3 months into it. I am discovering that I can't tolerate any soy and if I eat it I feel bad again. It does take time to get better and it is SSSSSLLLLLOOOOWWW. Keep at it, and don't lose hope. We have all been there, and most of us are still there sometimes. It does get better and in a few months you will be surprised at how far you have come. You may not notice too much change from day to day but I'll bet in a few months you'll really be able to see progress.

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