Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    2. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    3. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    4. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    5. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,851
    • Most Online (within 30 mins)
      7,748
    Mamabear66
    Newest Member
    Mamabear66
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.