• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   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

Not Sure...
0

Rate this topic

7 posts in this topic

Recommended Posts

Hey guys...

This is going to be a long post....

I've been experiencing extreme fatigue, aches and pains (muscular & joint(, headaches, migraines, cognitive problems amongst many things for the last 6 years. I initially had a diagnosis of CFS/ME which was then changed to Fibromyalgia and (possibly) lupus. Basically, my blood work suggests a possible lupus diagnosis but currently I don't fully meet the criteria for a full diagnosis (apparently it can take many many years). Anyway, back in 08, I was tested for Celiacs after I complained of a grumpy tummy when I had a lot of wheat based products. I was negative then which I thought nothing of and assumed that that wasn't a problem. Then in early June, I had a large crash and mum suggested I go gluten free. I asked by GP about it and she said it was worth trying because some people can be negative in the blood test but still be sensitive. So I started on a gluten-free diet for 6.5 weeks. Initially, I thought it had some effect as I didn't have a huge crash and wasnt in a lot of pain after my exams. But the baseline level of fatigue did not change so I assumed it didn't work. Basically, Ive been back on a normal diet for a week now and whilst my energy levels havent suffered, I've become quite sore again doing minimal things (especially from yesterday) - the sores I've been in weeks! So I guess after all this info that I've bombarded you with, I'm wondering whether there can be a "delay" in a reaction to gluten. I hear of people getting sick almost immediately after they've consumed gluten so I don't know whether to consider this part of my "other" conditions or some reaction associated with gluten.

Thanks for your time & reading this.

Share this post


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


Hi and welcome to the board! Yes what your doctor told you about some people testing negative but still being sensitive is true. Many people get false negatives for the tests, but positive changes when they do the diet. It sounds like you had some symptoms go away when you ate gluten free. That means you need to stick to the gluten free diet. 6.5 weeks is not very long to give you body to heal if you have been sick for a long time. My symptoms are mostly neurological like you describe (pain, fatigue, etc.) and my neuro symptoms don't start until a day or two after I eat gluten. So there can definitely be a delay. Everybody's body is different in how long it takes them to respond. Some people can also consume trace amounts of gluten over several weeks and feel okay, but the trace amounts add up until BAM they feel like they were hit by the gluten truck. So you should be careful of very small amounts and cross contamination even if it seems like you are not having symptoms.

As far as your fatigue that didn't go away there could be other problems that go hand in hand with gluten intolerance causing the fatigue. Things like vitamin deficiencies or other immune diseases. It's very common for people with celiac to have other things like lupus or thyroid diseases. The good news is that going gluten free will not prevent you from being tested for these other things. It will make any future tests for celiac negative however. If you were avoiding large amounts of wheat prior to your first blood test (because you said you already noticed it made you crash) then that could have made the results low enough to be false negative. I have read you need to consume the equivalent of 4 slices of bread a day for 2 months prior to testing in order to get a chance at a positive test. So if you were not eating large quantities of wheat to begin with that could explain the negative test.

Share this post


Link to post
Share on other sites

Yes, there is a delay from gluten-caused autoimmunity. Some people have fast reactions. My own symptoms can be anywhere from 4-48 hours after eating gluten, and I don't get the canker sores until a few days later. I was just reading a paper that the peak in T-cells in celiacs fed gluten is actually not until six days after the gluten.

I'm glad you found something that might help the pain. I hear fibro is pretty awful.

Share this post


Link to post
Share on other sites

Hmm... thanks guys. I may have to consider going off gluten another time and this time make more note of other symptoms. Whilst I was off gluten, I still had a background low level ache but it didn't really escalate to the "sharper" muscle pain that I'm getting everyday now. Will have a chat to my GP about it

Share this post


Link to post
Share on other sites

my knees hurt a lot on gluten and it went away off gluten and came back with the gluten challenge.

Share this post


Link to post
Share on other sites
Ads by Google:


just a matter of days I think.

I found I had forgotte all about it but I had notes.

Share this post


Link to post
Share on other sites


Ads by Google:


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
      108,167
    • Total Posts
      940,043
  • Member Statistics

    • Total Members
      66,148
    • Most Online
      3,093

    Newest Member
    SuzanneB
    Joined
  • Popular Now

  • Topics

  • Posts

    • I posted this because ... I wanted us to have some info and see news reports about stuff related to Celiac/gluten free.  But I haven't seen any new tests on the Cheerios.  Has anyone?  
    • I have problems with corn so I have to be aware of that when shopping for spices and gluten-free baking products as Raven pointed out. I use Badia which states certified gluten-free As for encouragement drink lots of water and rest. A nice soak in tub sometimes is soothing. I hope it passes soon. If you find out it is gluten-free after all ask about corn in product, on the line, or facility . May your symptoms be minimal and pass fast  best wishes edit: it was Karen not Raven who mentioned corn  starch my bad entirely 
    • Nov 18, 2015 >.< yeah it was older, Checked some newer testing others have done and found the more recent ones under 5ppm.....so perhaps they got their act together. I still am that old dog recalling being hit and growling at them about it.
    • Yes, I've seen these and believe that these were taken during the time period that GM had an issue with a contaminated truck, and this caused them to issue a recall on batches made at a plant. If I am correct about this, that was years ago, and they have corrected that issue. What is the link for this? What time period were these tests done?  I am fairly certain you are showing old data here, that is old news that was dealt with by GM...but please share if you know.
    • Granbia is wholesale only, GFHarvest you can order and they ship anywhere sales under http://www.glutenfreeoats.com/gluten-free-oatmeal/
          Ok it is rare...1/5  boxes seems to be a maybe..... Lab: Bia Diagnostics (www.biadiagnostics.com)   Sample                                   Assay/Extraction                               Results (ppm gluten) Entire box homogenized first via a blender and then through a coffee grinder Cheerios Yellow Box 1          R5/Cocktail*                                      7.3, < 5, 5.1 Cheerios Yellow Box 1          R5/GEB**                                           < 5, 9.6, < 5 ..................... Cheerios Yellow Box 2          R5/Cocktail                                        5.5, 7.0, 5.9  Cheerios Yellow Box 2          R5/GEB                                              < 5, < 5, < 5 ..................... Cheerios Yellow Box 3          R5/Cocktail                                        5.2, 5.5, < 5 Cheerios Yellow Box 3          R5/GEB                                              < 5, 5.5, 12.1 ...................... Representative sample homogenized to a fine powder Cheerios Yellow Box 4          R5/Cocktail                                        6.1, < 5 Cheerios Yellow Box 4          R5/GEB                                              < 5, < 5 ...................... Cheerios Yellow Box 5          R5/Cocktail                                        17.8, < 5 Cheerios Yellow Box 5          R5/GEB                                              24.5, 9.1 Cheerios Yellow Box 5          (sample re-homogenized)   R5/Cocktail                                        < 5, < 5 ....................... Honey Nut Cheerios Box 1   R5/Cocktail                                        < 5, < 5 Honey Nut Cheerios Box 1   R5/GEB                                              < 5, < 5                                   ........................ Honey Nut Cheerios Box 2   R5/Cocktail                                        11.2, < 5 Honey Nut Cheerios Box 2   R5/GEB                                              < 5, 5.1 Honey Nut Cheerios Box 2 (sample re-homogenized)   R5/Cocktail                                        12.5, < 5 ....................... Multi-Grain Cheerios Box 1  R5/Cocktail                                        < 5, < 5 Multi-Grain Cheerios Box 2 R5/GEB                                               < 5, 5.2







      Sorry to be the jumpy rabbit, but once bitten twice shy, I recall when they first came out with gluten-free cheerios....yeah it was worse back then and that pain and trickery will not be forgiven.
  • Upcoming Events