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. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      how much gluten do I need to eat before blood tests?

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      how much gluten do I need to eat before blood tests?

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for...
    3. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      how much gluten do I need to eat before blood tests?

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I...
    4. trents
      - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Accuracy of testing concerns

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal.
    5. Theresa2407
      - Theresa2407 replied to chrish42's topic in Doctors
      4

      Doctors and Celiac.com

      Our support groups in Iowa have tried for years to educate doctors and resource sites like this one. We have held yearly conferences with continued education classes. We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott. In those many years we may have had 2 doctors attend. We sent them information, with no response. I talked to...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,255
    • Most Online (within 30 mins)
      7,748
    Christie Fassel
    Newest Member
    Christie Fassel
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
      Doctors and Celiac.com

      By Theresa2407 · Posted

      Our support groups in Iowa have tried for years to educate doctors and resource sites like this one.  We have held yearly conferences with continued education classes.   We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott.  In those many years we may have had 2 doctors attend.  We sent them information, with no response.  I talked to my personal doctor and she said their training for Celiac was to show them a skinny man in boxer shorts and a huge stomach.  Saying if you see this, it is Celiac.  If it isn't in their playbook then they don't care.  Most call it an allergy with no mention of our immune system.  There is so much false information on the internet.  Then people don't understand why they can't get well and are acquiring more immune diseases. I mention this site to everyone.  Scott has working hard for the Celiac community.
×
×
  • 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.