• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New 2 Gluten-Free
0

9 posts in this topic

Recommended Posts

I'm new to Celiac Disease and the gluten free diet and have a few questions for anyone who can answer. Because of the malabsorption in my small intestines, I have lost quite a bit of weight and was curious as to how long it will take for me to gain it back. I only started my Gluten-Free diet 4 days ago and understand it can take some time to recover and heal. I also have been suffering from daily headaches since removing gluten from my diet. Could this be a withdrawel symptom? Any advice you all can give would be greatly appreciated!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I am so excited to have you on the road to recovery!  Headaches could be a withdrawal symptom, but any gluten you come into contact with can throw you off too.  Work more and more to discern any product with gluten and get it away.  I always tell my children if they have a headache to make sure to drink enough water.

 

How long did you have knowledge of your symptoms?  What are you willing to do to get better?  Both of these can help determine just how fast you will recover.  I had at least 30 years of celiac symptoms and at 18 months post gluten I am feeling good much of the time.  Walk in the right direction and you will be getting places!

 

Get well,

*** some flowers for you,

D

Share this post


Link to post
Share on other sites
cyclinglady    719

Lots of folks go through withdrawels from eliminating gluten, so you're not alone.  I'm hoping others can respond to this since I didn't get headaches.  But I can tell you that it can take up to 1 to 2 years to heal from celiac disease  (longer for others).  Hang in there!

 

Check out the newbie information on this forum:

 

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

It contains lots of helpful hints.  

Share this post


Link to post
Share on other sites
nvsmom    332

Ugh, that withdrawal headache was a nasty one. I still remember it... and my moodiness, I'm lucky my family didn't disown me.  ;)

 

Hang in there. Withdrawal usually only lasts a week or so and then improvements will start. Just don't expect linear progress. It's often two steps forward and one step back, or even two steps back before you move forward.  Healing can take weeks to years.  I hope you are one of the lucky ones!  :)

 

Best wishes and welcome to the board.  :)

Share this post


Link to post
Share on other sites

Oh, the days of losing weight without even trying. How I miss you. 
 

The withdrawal headache is rough - that is if you can stay awake long enough to notice it. Totally normal symptom of withdrawal. Drinking lots of water helps speed it up. Lots of folks swear by probiotics and digestive enzymes though they never seemed to help me. Expect brain fog to follow the headache and to last for a few additional days. It is kind of like when you are running a fever and you don't even want to read a book, but without the fever. You'll think you're fine, but once you're finally recovered from the fog, realize that you were not.

And I would also expect you to get glutened multiple times in the first month - contamination still remaining in your own kitchen or eating something you thought was gluten-free but was not. That is totally normal too. And even if it is only a slight cross contimination and you don't get gastro symptoms, you can expect to have a few days of irritability, headaches, and then brain fog for every instance, some worse than others. But it does get a lot easier and soon enough, you'll be counting the time since your last accidental glutening in weeks rather than days, and then in months.
__________

I think a lot of the weight gain will have to do with what you are eating and how much damage you may have. Plus, many who have gone gluten free also discover that they have additional food allergies/sensitivities that they need to sort out.

But, if your experience is anything like mine, you'll start to gain right away, though slowly.

I would get tested for vitamin deficiencies, especially because you obviously had malabsorption issues. They are common in celiacs, can slow down the healing process, and can cause their own symptoms. You'll see many stories of people feeling worse after going gluten free simply because they didn't know they had deficiencies. And many of them can't be solved with a multivitamin or just by slowly starting to absorb nutrients again.

Other than that, I'd say don't worry about your weight-at all. You've got enough on your plate already and it will happen all on its own. Many gluten free foods actually contain more calories than their gluten counterparts so eventually, you'll probably be trying not to gain more.

I'd try to just focus on eating a wide variety of healthy, whole, fresh foods. Avoiding processed foods can help avoid accidental glutenings and reactions to odd ingredients like artificial flavors or colors. And have fun in the kitchen! This is a great time to try out some new recipes and get a few new favorite meals under your belt.

You're going to do great!

Share this post


Link to post
Share on other sites
Ads by Google:


Chrisz1000    5

I'm new to Celiac Disease and the gluten free diet and have a few questions for anyone who can answer. Because of the malabsorption in my small intestines, I have lost quite a bit of weight and was curious as to how long it will take for me to gain it back. I only started my Gluten-Free diet 4 days ago and understand it can take some time to recover and heal. I also have been suffering from daily headaches since removing gluten from my diet. Could this be a withdrawel symptom? Any advice you all can give would be greatly appreciated!

 

Hi there, without knowing your age and how long you've had noticable symptoms its hard to say how long it will be before you start gaining weight. Personally, after 5 months of gluten free I am managing to maintain weight without having to eat the equivalent of my own body mass every day! I haven't yet started gaining weight.

 

I have suffered malabsorption for most of my life, without knowing it was Celiac - always put it down to fast metabolism. On going gluten free I was losing weight despite eating huge portions all day long. I didn't need to lose weight either, I am literrally skin and bones - but after 5 months I am able to keep a steady weight whilst doing regular, fairly strenuous excercise. I hope I can start gaining weight soon. Here's what I did to start with, maybe it will give you ideas:

 

Reduce excercise - don't want to burn calories that I am not able to replenish!

Take enzymes (gluten free of course) - These break down food for you so your gut has an easier time. I've read that a person with poor immune system, or weakened body, produces less enzymes from the small intestine and pancreas. Therefore extra enzymes should give you a helping hand.

Avoid dairy - damaged gut normally means lactose intolerance. Any dairy you consume will settle in your guts therefore affecting your ability to digest other foods.

Check deficiencies - I had a really positive improvement when I took lots of B12. I wanted it as natural as possible so drank lots of lacto free milk where 200ml = 64% of your daily quota.

Don't overload with food - In the early stages I ate and ate and ate, thinking I would increase the chance of absorbing something. This actually caused me to lose weight and feel rough. It only served to overload my digestive system. Eat normal amounts of whole foods.

 

Progress has been painfully slow. Those first 2 months seemed like years. However after 4 months I was able to reintroduce excercise.

 

Oh and yes, headaches were a pain. I found they were similar to dehydration headaches which I think ties in with your body losing all of the inflammation (water mass). I took salts to keep my salt levels up and drank plenty.

 

best of luck on your new start, it will be worth it!

Share this post


Link to post
Share on other sites

Thank you all so incredibly much for the info and words of encouragement. I'm 24 and have suffered for years with symptoms, the worst being the past 3-4 years. Because I work out and am athletic and the "picture of health," I've always been given vague answers from physicians. Most of the time when I rattled off my symptoms, the doctor would order some routine blood work, which is always within normal values and would respond with "It's just stress." So severe acid reflux (no hernia) IBS that made me run to the bathroom bent over, chronic fatigue, exhaustion, weight loss, and joint pain are all because of stress? I was misdiagnosed many many times and am thankful to now know gluten is the culprit of my symptoms. I'm happy to hear that headaches and brain fog are normal withdrawel symptoms. I'm currently working on making my kitchen Gluten-Free and learning what items are/can be contaminated with gluten. Who would have thought ketchup and lite sour cream? Not me. This will definitely be a big learning process for me. Thank you all for posting! Ive already started a notebook with info you fellow celiacs have given me thus far!

Share this post


Link to post
Share on other sites


Ads by Google:


freeme808    2

I've been gluten-free for two weeks now(well, I actually fell off the wagon yesterday by having several bites of my husband's takeout). I actually got a really bad cold the day I went gluten-free that lasted for a week, so I actually had a hard time deciphering the cold symptoms from withdrawal symptoms. But looking back, the symptoms that I still have are: headaches, fatigue, bloating, extreme moodiness, brain fog, and sometimes I feel like I have the flu. After the first week of going gluten-free, the wonderful itchy rash came back. It's actually flared up really bad since poisoning myself yesterday.

 

I definitely am having a harder this time around. I had gone back on gluten for testing-thank God that's over!. We have a bunch of family visiting this summer and it's really hard to feel this way when they are around. I feel so anti-social, and grumpy. And the last thing I feel like explaining or talking about with people right now is food(which is not the norm for me, I love to cook, and talk about and help people with nutrition). I guess I feel very edgy.

 

From what I've read, and what the previous posters have mentioned...is that it will get better with time. We just gotta hang in there. Good luck with everything New2GF! :)

Share this post


Link to post
Share on other sites
LauraB0927    31

Welcome to the forum!!!  I have been gluten free for about a year and three months now after my diagnosis and it is a long road but it is a worthwhile one.  I was diagnosed in May of 2012 via blood work and endoscopy - then I had repeated blood work in November of 2012 to see my progress after 6 months.  My TTG level went from over 100 to about 20, and by the time I went for my yearly follow-up, my blood work came back normal as well as a normal endoscopy.  Everyone heals differently based on the amount of damage you have.  I agree with the other posters - get your vitamin levels checked and I would also suggest a good digestive enzyme supplement - they helped me a lot during the healing phases.  Good luck!!!    

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,897
    • Total Posts
      938,539
  • Member Statistics

    • Total Members
      65,805
    • Most Online
      3,093

    Newest Member
    Smarting
    Joined
  • Popular Now

  • Topics

  • Posts

    • I had 23andme testing which showed I have genes DQ2.5 and DQ8. When I learned this I decided to stop eating gluten to PREVENT getting celiac, but didn't worry about cross-contamination. A year later I got sick, and eventually had an endoscopy which showed Marsh 1. My blood tests were negative, as one would expect for anyone eating gluten-free. My gastroenterologist told me I could either decide to live like a celiac, or do the full 12-week gluten challenge. I cleaned up my kitchen and started being very careful with eating away from home, and my symptoms went away.
    • The beginning of your story sounds very much like mine. I stopped eating gluten regularly when I adopted a mostly paleo diet years ago (bonus: my lifelong canker sores disappeared!). When I got 23andme testing done and learned I have both high-risk celiac genes, I stopped eating gluten altogether, thinking I couldn't trigger celiac if I didn't have gluten exposure. But, since I didn't have a celiac diagnosis or symptoms, I wasn't careful about cross-contamination.  Then I got sick. My symptoms were vague: bloating, food sitting like a rock in my stomach after eating, exercise intolerance, weight loss, chest tightness. I had a bunch of tests, tried omeprazole, and eventually had an endoscopy. Because I hadn't eaten gluten in a year, I didn't expect any results suggesting celiac, but sure enough, my biopsies came back as Marsh 1: inconclusive, but all the other reasons to cause this result had already been ruled out or were very unlikely. I then had bloodwork for celiac, which was negative, as expected for anyone on a gluten-free diet. At this point I was sent to a gastroenterologist, who said she could not definitively diagnose me with celiac, and that my options were either to assume I have celiac and live like a celiac, or to do the full 12-week gluten challenge and then repeat all the testing. i didn't want to take the risk of triggering another autoimmune disease by doing the gluten challenge, so I cleaned up my kitchen, replaced my cutting boards, cast iron pans, and anything plastic or silicone, and confined gluten to one corner of the counter. I started being the annoying person at restaurants and potlucks asking a thousand questions. And my symptoms went away. i still don't know whether I have celiac. I struggle with the restrictions it places on my life outside of my home (travel, social life). Periodically I wonder whether I shoukd just do the gluten challenge so I know. But I'm afraid of the possible risks. Your allergist did you a great disservice my telling you to go on a gluten-free diet without testing you for celiac. But that ship has sailed. At this point I would say your choices are the same as mine: either do a complete 12-week gluten challenge and then retest, or decide to live as if you had a firm celiac diagnosis. It can be a tough decision. Good luck and I hope you figure it out and get better very soon!  
    • We do not have gluten in my home other then the bread he  Uses to make school lunch sandwiches.  however I am divorced so he spends a good part of the week at his dad's as well where he can eat whatever he wants. My son is a terrible eater and has been very picky since he was 2 years old, he's now 6.  Up until recently he literally would only eat 5 things. He once vomited all over my kitchen after I insisted that he try watermelon.   In the last several months he's been expanding what it is that he will eat however. Unfortunately still no fruits or vegetables, I have to sneak those In via juice.  it is actually one of the reasons that  I am not in a hurry to get him tested. I have to return to Boston to see my specialist next summer and we are going to take my son with us then for testing.  so it buys me time to expand his food list just in case we have to take half of it away.  my brother's children however, because he's a farmer, have always eaten a lot of Whole foods.  his house is totally gluten free but his mother-in-law will take his daughter out for treats occasionally. She does not seem to suffer any adverse reactions. My nephew on the other hand was always constipated and bloated when he was on gluten.  The kids will literally just walk out into the garden and grab a cucumber and start eating it basically.  I'm not even exaggerating. I am envious that his kids will do that and I wish that I had  tried harder with my son when he was younger instead of always defaulting to what he would eat.  I know my nephew will verbalize a memory of not liking some of the changes that were made initially at their house, like with the gluten-free bread. But then he will say he likes it now. So I think kids do definitely adjust  their preferences.  unless of course you're my son, and then the neighbors are wondering whether or not they should call Child Protective Services because  There is an awful lot of screaming next door at dinner time.  
    • S. If this was the cause of celiac disease, the gluten-free diet would be useless, because people 25 Feb 2015 Fish exposed to glyphosate develop ... View the full article
  • Upcoming Events