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How Long Until I Feel Better?

Rach7982

By Rach7982
in Coping with Celiac Disease

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Rach7982 Newbie
Rach7982
Posted

Hello,

 

I have been gluten free for a little over a week. I have not officially been diagnosed with celiac but my doctor recommended I cut gluten out due to my symptoms.  I have always had very healthy eating habits and until recently because I have felt bad , I have worked out everyday.  I know everyone is different but in general how long can I expect it to take until I feel somewhat normal ? I am still very bloated and dealing with GI issues ( I am slim and it looks like I am pregnant) , I ache after I eat and just generally feel lousy and nauseous. Oh and my hands go numb( scary).  Those are just a few of the symptoms I have developed in the last 8 years..it would take too long to list them all.  I just want some relief. I think I am doing everything right , I eat only unprocessed foods such as chicken, fruit , veggies and nuts.  However, I still feel horrible. Should I be doing something else ? I am waiting on the results of a genetic test to see if I am positive. I wish I could just curl up in a ball and sleep until this all passes. Is there a secret to moving this process along a little faster? Celiac runs in my family but I never, ever thought that my health problems could have been because of it.  I am nervous and worn out and just plain feed up . I have young kids and it is hard to keep up with them. Any advice would be appreciated , thank you !

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nvsmom Community Regular
nvsmom
Posted

You could be experiencing withdrawal. About 1/3 celiacs feel worse (more fatigued, headachey, pained) before they feel better. It usually takes a few days to hit and seems to last 1-3 weeks in most. once you get past that it will probably get easier.

 

That being said, why not get tested for celiac disease now before going off gluten for a long time? A accurate test for celiac requires that people resume eating gluten (about 2 slices of bread per day) for 8-12 weeks - 12 being better. That can be painful for many. Consider getting testing soon after resuming eating gluten for a few days rather than eating gluten for 3 months at a later date.

 

... And I do think you should get tested, you have some classic, if not horrible, symptoms.  Good luck with whatever you decide to do,.And welcome to the board.  :)

1desperateladysaved Proficient
1desperateladysaved
Posted

You are starting to heal already, but it may take a while before you realize it!  Take some down time.  Bring your children into a room with you, make sure there is nothing they can get hurt on. Close a door.  Lay down and watch them play.  I am a mother of 5 and remember needing to do this when they were young.

 

D

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Sticking to whole foods is a great start.  I think some find raw veggies too harsh at first, although I had no problem with them.  Drink lots of water - it helps flush everything out.  And I know it is really tough to get sleep with young kids in the house, but sleep is one of your best friends while you're healing.  I agree with nvsmom that now would be the time to get tested for Celiac (blood test for antibodies and then a biopsy if its positive to confirm) - before you go off gluten - but that's a personal decision only you can make.  If you do decide to stay gluten-free, make sure you're 100% gluten-free - no cross-contamination and no cheating.

 

It does get better. 

GF Lover Rising Star
GF Lover
Posted

Another reason to be tested now is your children.  If you have Celiac Disease in your family then your children may be affected also.  There is a genetic component to Celiac.  If you test negative than you might need other testing to find out if you have a different health issue to address.  Healing from Celiac Disease can take up to a year for all issues to resolve assuming you have a clean diet.  Digestive symptoms seem to resolve more quickly than others but this is unique to the individual and their starting health point. 

 

Colleen

Rach7982 Newbie
Rach7982
Posted
  • Author

Another reason to be tested now is your children.  If you have Celiac Disease in your family then your children may be affected also.  There is a genetic component to Celiac.  If you test negative than you might need other testing to find out if you have a different health issue to address.  Healing from Celiac Disease can take up to a year for all issues to resolve assuming you have a clean diet.  Digestive symptoms seem to resolve more quickly than others but this is unique to the individual and their starting health point. 

 

Colleen

Thank you for the advice.  I have had the blood test done and it came back negative but due to my on going problems a genetic test was done.  I am still waiting on the results of the genetic test. Hopefully I will be feeling better soon !

Rach7982 Newbie
Rach7982
Posted
  • Author

You could be experiencing withdrawal. About 1/3 celiacs feel worse (more fatigued, headachey, pained) before they feel better. It usually takes a few days to hit and seems to last 1-3 weeks in most. once you get past that it will probably get easier.

 

That being said, why not get tested for celiac disease now before going off gluten for a long time? A accurate test for celiac requires that people resume eating gluten (about 2 slices of bread per day) for 8-12 weeks - 12 being better. That can be painful for many. Consider getting testing soon after resuming eating gluten for a few days rather than eating gluten for 3 months at a later date.

 

... And I do think you should get tested, you have some classic, if not horrible, symptoms.  Good luck with whatever you decide to do,.And welcome to the board.   :)

Thank you ! it is hard to wait it out but I am glad to know it should get better. I have had the blood test done but it came back negative. My doctor isn't convinced that I still don't have celiac so she ordered the genetic testing. Thanks for your advice.

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nvsmom Community Regular
nvsmom
Posted

Non-celiac gluten Intolerance (NCGI) could be something to consider too. The poor folks who have NCGI have ALL the same symptoms as a celiac except the villus atrophy; pain, GI issues, cognitive problems, nutitional deficiencies... all there, just very hard to test for.  :(

 

Hang in there!

GFinDC Veteran
GFinDC
Posted

Hi Rach,

 

You are very early on in the gluten-free diet at this point.  One week is just the beginning of the healing process.  It takes some time being 100% gluten-free for the body to back off making antibodies to gluten.  That can take a couple weeks or months, depending on the persons immune system and the cleaness of their gluten-free diet.  When the antibodies are active and attacking your gut villi, they are doing damage to your body.  The body tries to repair that damage but it is an ongoing battle.   Repairing the damage takes nutrients (vitamins, minerals, protein).  You could ask your doctor to test you for vitamin deficiencies.  Over time your gut will heal and be able to start absorbing vitamins properly again, but for now you may be suffering mal-absorption.

 

New people sometimes aren't aware of how little gluten it takes to set off a reaction by the immune system.  Even small amounts of gluten can get the immune system fired up, and it take weeks to settle down again.  Crumbs in an old toaster can make you sick.  Kids with gluteny mouths or hands can spread gluten around too.  It doesn't take much.

 

It's a learning process to go gluten-free, but after a few months it get more familiar.  Another possible test to consider is a bone density scan.  Celiacs sometimes have lower bone density, possibly due to not absorbing calcium well.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

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Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

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      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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