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      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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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New2GFree2013

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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!

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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

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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.  

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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.  :)

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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!

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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!

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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!

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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! :)

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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!!!    

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