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New Member Newly Diagnosed

JanineK

By JanineK
in Coping with Celiac Disease

Recommended Posts

JanineK Newbie
JanineK
Posted

Hi everyone, I was just diagnosed with celiac.I have started gluten free for 2 days now and i feel like i have been in a car wreck!!i am so exhausted!! and cant think straight, I have read these are withdrawal symptoms? how long will this last and why is this happening? I feel worse being off gluten!

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Cara in Boston Enthusiast
Cara in Boston
Posted

Welcome to the board and to the gluten free life -

Not everyone gets withdrawal symptoms (I did, my son did not) but they don't last long. For me, the first 4-5 days were the worst (worst symptom was a terrible headache that would not quit) then it gradually got better and better until I started to feel great (1-2 weeks?). After that, each week that passed, I felt even better. Some symptoms are slow to leave, but just be patient.

The first months are also hard because you are likely to make mistakes that will set you back for a short time (mine was gluten in my B vitamin). It took me a long time to figure that one out. Stick with whole, naturally gluten free foods in the beginning (meat, dairy, fruits, rice, vegetables, nuts) and steer clear of the gluten-free processed foods (cookies, crackers, pasta, bread, etc.) until you are feeling better. It is easy to get caught up in all the gluten-free products - most of which have very little nutritional value. Get healthy first and give your body a chance to heal.

It gets easier and it is totally worth it. Hang in there -

Cara

squirmingitch Veteran
squirmingitch
Posted

I second what Cara said. I will tell you though that my withdrawal symptoms lasted a month but I had no headaches. Each of us is different & no one can predict or tell you your withdrawal will last x days or x weeks. But I will tell you like Cara said --- it DOES get better & you will be happy! You just have to hang in there & tough it out. Whole foods.

My husband is over 3 weeks gluten-free & has had ZERO withdrawal symptoms. I'm jealous!smile.gif

JanineK Newbie
JanineK
Posted
  • Author

Thank you so much for your responses, the diagnosis is very overwhelming. but i need to heal my body, thanks for the food suggestions any advice helps ALOT! so glad i found this site.

squirmingitch Veteran
squirmingitch
Posted

Ask any questions anytime Janine. And this is the place for ranting if you need to; also for voicing frustrations. We understand. Been there, done that you know.

The best thing you can do is to read as much on this board as you can & ask if you aren't clear on anything.

I also will say that most celiacs have to lay off the dairy for a while. Most can add it back after a time but some never can. And many celiacs cannot tolerate soy; I am one of those.

And the whole foods is the best for healing you right now & for say 3 months. Shop the edges of the store. Forget processed foods; even canned tomatoes. This also allows you time to learn all the rules without being stressed out & overwhelmed. The last thing you need as a newbie is to get accidentally glutened. There is a steep learning curve involved; VERY steep.

Have you had your thyroid checked & I mean the FULL panel not just your TSH? If not then get your doc to do so. Also, you need to have your vitamin levels checked before you begin taking vitamins so you can know where you're at now. Then after that you need to go on the appropriate vitamins.

I will reiterate that the withdrawal can get pretty hairy. Or not. ??? I got real woozy, dizzish feelings & like my knees were going to buckle. I had those things before going gluten-free b/c of the damage toll on my body from gluten but when I went through withdrawal it got much worse.

I had a lot of trouble (& others too) with what felt like low blood sugar. And most, myself included, get ravenous! Continually! It's normal during this. Don't worry about weight or calories right now. EAT! Your body is telling you to EAT b/c it has been lacking the nutrients for so long. It's trying to make you well & repair itself. EAT! Protein is a big factor --- we seem to need more of it & it's good to eat some fat with the protein. As far as that goes it also applies to carbs --- example: you eat an apple --- have a few cashews with it.

I wish you swift healing!

KendraAnn Newbie
KendraAnn
Posted

I'm on day 26 of being gluten free and I'm still having headaches everyday. They are the kind that don't go away, even with excedrine which always works for me. Our bodies are detoxing trying to get all of the poison out of us and some people get worse before they are better. I sure hope these headaches stop soon though. I am happy to say my GERD has gone away and my BMs are what most people probably consider "normal"! Yay for that! :)

Mnicole1981 Enthusiast
Mnicole1981
Posted

I'm on day 26 of being gluten free and I'm still having headaches everyday. They are the kind that don't go away, even with excedrine which always works for me. Our bodies are detoxing trying to get all of the poison out of us and some people get worse before they are better. I sure hope these headaches stop soon though. I am happy to say my GERD has gone away and my BMs are what most people probably consider "normal"! Yay for that! :)

Glad to hear that! I hope to feel like that in a month. I am learning that I can't tolerate anything that I ate before. I had GERD issues yesterday. Prior to this sickness, I had not had any issues with GERD since 2008. Can't wait to feel like that again.

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LauraB0927 Apprentice
LauraB0927
Posted

I can completely relate to what you're feeling - I was diagnosed earlier this month and the withdrawal symptoms were interesting (to say the least). I was very fatigued (naps all the time), walked around in a haze, couldn't concentrate on anything, and basically felt worse than I did prior to being diagnosed (please keep in mind I didnt have terrible GI symptoms to begin with). There were times that I cried over the smallest thing - specifically when I went into a fudge shop that couldn't guarantee that the fudge wasn't mixed with flour. Thank god my fiance has been very understanding and has been willing to deal with my mood swings....

On the positive side, I'm starting to feel a bit better and think that I'm continuing uphill. The people on this forum are VERY knowledgeable and supportive - I agree with the others - keep reading the posts and you'll learn so much. I know I did. Please hang in there and do NOT hesitate to reach out for support - feel free to message me anytime, we can both be newbies together. :) Best wishes!!!

dani nero Community Regular
dani nero
Posted

Changing the type of fuel (what you eat) that you run on, means your body's chemistry changes.. Or at least I believe so.. Hang in there :-)

squirmingitch Veteran
squirmingitch
Posted

Changing the type of fuel (what you eat) that you run on, means your body's chemistry changes.. Or at least I believe so.. Hang in there :-)

And leave it to dear Dani to put it so simply. I would have made a hash of it trying to get all technical & would have ended up tangled in my spurs.

Perfect Dani! My hat's off to you!biggrin.gif

Lisa Mentor
Lisa
Posted

I'm on day 26 of being gluten free and I'm still having headaches everyday. They are the kind that don't go away, even with excedrine which always works for me. Our bodies are detoxing trying to get all of the poison out of us and some people get worse before they are better. I sure hope these headaches stop soon though. I am happy to say my GERD has gone away and my BMs are what most people probably consider "normal"! Yay for that! :)

I only keep Aleve in my house, but here is a list:

Open Original Shared Link

Over-the-Counter Pain Relievers

Over-the-counter pain relievers that are gluten-free include Advil, Aleve, Excedrin Migraine, Aspirin-Free PM, Motrin, St.Joseph's Aspirin, Tylenol and Tylenol PM.

Read more: Open Original Shared Link#ixzz1vkdKHmyK

Aleve works for me.

dani nero Community Regular
dani nero
Posted

And leave it to dear Dani to put it so simply. I would have made a hash of it trying to get all technical & would have ended up tangled in my spurs.

Perfect Dani! My hat's off to you!biggrin.gif

Always at your service :-D

JanineK Newbie
JanineK
Posted
  • Author

Ask any questions anytime Janine. And this is the place for ranting if you need to; also for voicing frustrations. We understand. Been there, done that you know.

The best thing you can do is to read as much on this board as you can & ask if you aren't clear on anything.

I also will say that most celiacs have to lay off the dairy for a while. Most can add it back after a time but some never can. And many celiacs cannot tolerate soy; I am one of those.

And the whole foods is the best for healing you right now & for say 3 months. Shop the edges of the store. Forget processed foods; even canned tomatoes. This also allows you time to learn all the rules without being stressed out & overwhelmed. The last thing you need as a newbie is to get accidentally glutened. There is a steep learning curve involved; VERY steep.

Have you had your thyroid checked & I mean the FULL panel not just your TSH? If not then get your doc to do so. Also, you need to have your vitamin levels checked before you begin taking vitamins so you can know where you're at now. Then after that you need to go on the appropriate vitamins.

I will reiterate that the withdrawal can get pretty hairy. Or not. ??? I got real woozy, dizzish feelings & like my knees were going to buckle. I had those things before going gluten-free b/c of the damage toll on my body from gluten but when I went through withdrawal it got much worse.

I had a lot of trouble (& others too) with what felt like low blood sugar. And most, myself included, get ravenous! Continually! It's normal during this. Don't worry about weight or calories right now. EAT! Your body is telling you to EAT b/c it has been lacking the nutrients for so long. It's trying to make you well & repair itself. EAT! Protein is a big factor --- we seem to need more of it & it's good to eat some fat with the protein. As far as that goes it also applies to carbs --- example: you eat an apple --- have a few cashews with it.

I wish you swift healing!

Thanks for all the info!! my gi doc sent me for full thyroid work im awaiting results.also did b12 which has been low for months..now i know why lol! I had a negative blood test for celiac but positive biopsy..had genetic gene in blood though..my GI is also sending me for hydrogen breath test on June 5th...Im lucy my GI is very up to date on celiac..I ordered some vitamins called CELI-ACT are they any good? they seen to have lots of good stuff and gluten free

JanineK Newbie
JanineK
Posted
  • Author

Thanks for all the well wishes In sure I will have lots and lots of questions!!

squirmingitch Veteran
squirmingitch
Posted

I can't speak for the Celi-Act vitamins as I don't know anything about them. Others may be able to speak on those.

Since you're neg. blood work but positive biopsy, this thread may be of interest to you & perhaps you can add to it:

https://www.celiac.com/forums/topic/92407-negative-blood-test-poitive-biopsy/page__p__792305__fromsearch__1#entry792305

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      Accuracy of testing concerns

      By knitty kitty · Posted

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    • trents
      Accuracy of testing concerns

      By trents · Posted

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      Accuracy of testing concerns

      By McKinleyWY · Posted

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