• 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.

Recently Started gluten-free Diet And Having More Symptoms Now Than Before
0

6 posts in this topic

Recommended Posts

I was tested for celiac 5 or so years ago and do not have the disease, but am definitely gluten intolerant.  I now believe I have been for 20 plus years.  At that time, the symptom that sent me to doctors was daily vomiting and losing lots of weight.  When I finally found a doctor that paid any attention to me, they did all sorts of testing, but I don't think much at all was known about celiac and so was never tested for that and the wheat connection was never made.  The doctor finally put me on ludiomil to see what would happen.  The vomiting stopped and so I thought I was good!  When I went through the celiac testing 5 yrs ago it was discovered that I was negative for it (no intestional damage,etc.), so again I thought the medicine was all I needed.  Now I am finding out that my thyroid problems, lack of energy, and other issues I am having is all related to the intolerance.  All that to say that I am now one-week gluten free and off the meds (for another long story).  My problem is that the symptoms of crampy gas pains, low energy and nausea, low grade headaches are worse now than before.  I am wondering if anyone else experienced this right after cutting out the gluten and how long before the good health effects started happening.

Share this post


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


gatita    32

Yup!!!! I definitely got worse before I got better. Some people call it 'gluten withdrawal,' I don't know what it was in my case, but it took a few months. Others start to feel better in a few days or weeks.

 

I didn't realize at first that I had also developed lactose intolerance and probably temporary intolerance to all kinds of other things. So you might also try laying off dairy and keep a food journal to see if other stuff bothers you.

 

I took longer than some (6-7 months) to start to feel better, maybe because of getting accidentally glutened along the way. It can take a while to learn all the sneaky places gluten hides! Eating out can cause lots of problems, even if you are careful.

 

Also please don't be discouraged by my experience. Although it took a while to feel better, I would never, ever go back! Besides my GI symptoms healing, my middle-aged joint pain is almost entirely gone! Wouldn't trade that feeling for all the pasta in the world.

Share this post


Link to post
Share on other sites

Yup!!!! I definitely got worse before I got better. Some people call it 'gluten withdrawal,' I don't know what it was in my case, but it took a few months. Others start to feel better in a few days or weeks.

 

I didn't realize at first that I had also developed lactose intolerance and probably temporary intolerance to all kinds of other things. So you might also try laying off dairy and keep a food journal to see if other stuff bothers you.

 

I took longer than some (6-7 months) to start to feel better, maybe because of getting accidentally glutened along the way. It can take a while to learn all the sneaky places gluten hides! Eating out can cause lots of problems, even if you are careful.

 

Also please don't be discouraged by my experience. Although it took a while to feel better, I would never, ever go back! Besides my GI symptoms healing, my middle-aged joint pain is almost entirely gone! Wouldn't trade that feeling for all the pasta in the world.

Thanks for the response.  Good to know that it is not all in my head, especially the extra lack of energy part!  When I first heard about celiac/intolerance and before I was tested I went off my medicine and wheat for 7-8 days to see what would happen.  It was the first time ever that I could go without the medicine and not throw up by the 3rd day.  Just to test myself, on day 8 I ate some pizza....I was in the bathroom 10 minutes later hugging the porceline god!!  That is when I got tested.  Having said all that, I think part of the problem now is that for the last 3 months I was/am having a hard time getting my Rx filled because Walmart's distribution warehouse has been out of it.  Until a week ago when I stopped the gluten, I was taking the meds just every 3 days and continuing to eat gluten.  It worked for a while but caught up to me recently and I am now feeling the full effects of having gluten in my system.  I am so ready and excited to see the positive changes to my health!!

Share this post


Link to post
Share on other sites
GFinDC    609

Hi Kcorcoran,

 

Yep, it can take some time for our guts to heal and start behaving normally.  Symptoms and reactions can be kind of variable for a while.

 

Here are  few tips for getting started (first 6 months or so)

 

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.

 

If you haven't seen them yet, these threads are full of goof info also:

 

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

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

Share this post


Link to post
Share on other sites
mommida    158

Do you have any of your old testing results?  Some GI docs hand over pictures of the endoscopy right after the procedure.  If you have any info post it.

 

If you are going to be tested, you need TO EAT gluten.

 

Keep a food journal to help determine hidden gluten or find another food intolerance.

Share this post


Link to post
Share on other sites
Ads by Google:


julissa    22

I have only been gluten free since November, and I felt better right away. I was noticing nausea here and there though, turned out I am also allergic to dairy and soy. so you might try eliminating suspicious foods one at a time and see how you do.

 

I eat only whole foods that I make myself, it's totally not worth it to eat any other way for me.

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
      107,906
    • Total Posts
      938,594
  • Member Statistics

    • Total Members
      65,822
    • Most Online
      3,093

    Newest Member
    blueides
    Joined
  • Popular Now

  • Topics

  • Posts

    • Not sure what you mean by "celiac growth spurt." How was the celiac diagnosis arrived at?  Based only on symptoms? Genetic testing? Endoscopy? Are you making sure that your daughter is strictly following a gluten free diet?
    • To me it sounded like he thought frying corn chips would contaminate the oil .     I never eat there.  I know a few years ago, the one by me was pretty Celiac friendly.  Maybe you had to have grilled wings?  They would get a clean bowl to toss them for Celiacs.  I don't know because I wasn't interested.  Maybe it depends on the store?  I would imagine one in Portland or Seattle or Denver , might be more aware than one in Omaha?  But even that depends.....
    • I would not eat there either for many reasons listed already. But what is wrong with yeast? *quote from op, not kareng 
    • Hi,  I just wanted to add some insight to my question on the test results.  I am 58 experiencing stress fractors to the foot without any extra activity.  I have osteoporosis and the thought process of the doctors is that I have another cause besides age for the osteoporosis.  The foot is not healing after 11 weeks in a boot.  Ortho sent me to Endo.  Endo did blood test.  Hormones normal and received the below results on Celiac.  I have had osteoarthritis since 21, Was diagnosised at 29 as being allergic to wheat, symptom was I lost my voice after having my first child.  Had my second at 32 and magic I could eat wheat again and not lose my voice.  Last year I was tested autoimmune because of lung issues; MAC and bronchiaestasis.  IGA was high then but no further testing.  I do not have digestion issues except lactose intolerant.  I do have low values on vitamin D. I do not go back to Endo until 2 weeks from now.  My sister is fighting her own issues which is pointing to autoimmune but drs. have figured her out yet.  My mom as MS and her mom died of ALS, Dad's side had Lupus.  Any thoughts?
    • I am sorry to hear you are having these problems with airborne particle sensitivity. My initial symptoms were neurological (extreme fatigue and visual migraines) and dermatological.  I had "eczema" from the base of my skull to my bra-line that itched and burned terribly.   I do not have Celiac disease but I do have gluten intolerance.  I have remained strictly gluten free for 6.5 years now (except for occ'l "glutenizing" by someone trying hard to be nice and feed me something they believe is gluten-free).  The first year I was gluten free I continued to have this rash in a smaller area but it would flare in the hairline.  We found gluten free oats in a product we used and cutting out oats almost completely alleviated my skin reaction.  My doctor informed me that the protein in oats is similar to other grains containing gluten so I may be reacting to it even though it is not actually gluten.   I now use only gluten free hair products as I have long hair and I figure that even though it is external hair blows in my face and I push it away or I may touch my hair to push it out of the way when eating or socializing.  Everyone is different as far as items they tolerate but I have had good results with Griffin Remedy (available online at their website), Aura Cacia (although they do use Cetryl Alcohol which I used to try to avoid for other reasons), and Avalon Organics Cucumber gluten-free shampoo and conditioner.  You probably already use gluten-free facial care products and lip glosses as you sound knowledgeable about Celiac and gluten-free issues. I don't buy any of my gluten free products from a store where they are shelved with the regular baking products.  (I would be OK with washing an item if it were plastic packaged but many are in cardboard so I personally feel the risk of contamination goes up).  I am blessed to be married to a man who is open minded and glad to see me feeling better so there is nothing with gluten in our home (in food products).  My diet is similar to the person who stated, "Solid advice" above.  Finally, if I am going out with friends I take food along with me except for a very few establishments where I am sure that I am safe.  I also bring a bottle of water or iced tea, and even a napkin, as some people preparing food may be touching something with gluten and then handling glasses for beverages or setting tables without being fully aware (as was mentioned above pertaining to the gluten-free oats).  I also found with the gluten-free diet fad that I have to be vigilant in asking about preparation in unknown venues (i.e. We were on a ski vacation and I was excited to see gluten-free items on the menu BUT the preparation area was not segregated, nor was the cookware.  I was able to explain my needs and accommodations were made.  Hopefully, the owner were more educated regarding the needs of people with gluten sensitivities vs. dietary preference and made some changes in their practices.) I hope you find the piece to your puzzle that works for you!    
  • Upcoming Events