• 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Venting
0

4 posts in this topic

Hello,

I've been gluten free for three years, and no longer eat 'gluten free' food made on shared equipment/facilities. I'm pretty sensitive, which I learned the hard way in the beginning because I'd try things like grabbing a french fry off my boyfriend's hamburger plate and ending up bed ridden for one or more days. It feels somewhat like the flu, with chills, and joint swelling. Anyway, I'm mainly just venting, because its been three years and I still suffer from malabsorption, hypoglycemia, and anemia. Despite iron supplements and a high iron diet, I feel as if my fatigue is getting worse. My doctor just looks at me and says, "You're just sensitive." After years of fighting for some diagnosis, I sometimes feel like I'm at square one. Sometimes I feel like I'm going insane! I'm I supposed to live in a bubble?

0

Share this post


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

Hi, allisont, I'm so sorry to hear that after all this time you are still having so much trouble. May I ask if your PCP is keeping on top of your various nutrient levels, in addition to ferritin. Like Vit D, B12, folate, Vit. C, potassium, magnesium, calcium, zinc?. Have you had your thyroid tested? Low levels of any of these are possible causes of fatigue. Even if you're gluten intolerant rather than celiac does not mean that you will not be deficient in these nutrients, and when I say deficient, I am not talking about way below normal, but low normal. Normal is set way too low for most of them and you really need to take supplements to keep you in mid-range, so if you have not had any of these checked lately I think you are ovderdue :) Get your blood sugar checked again, too, if you haven't already, and get copies of your results instead of just having your doc tell you that you are fine :rolleyes:. Their fine and our fine often differs remarkably. It is much easier to do nothing than do something which involves thinking.

If you are still suffering from malabsorption, you may still have a leaky gut which needs healing, and you should be takeing high-dose probiotics to assist with healing, and maybe some L-glutaminel you may even benefit from some digestive enzymes because your pancreas may not be putting out enugh..

Let us know what you have been doing to help yourself heal.

And by the way, putting something of dubious origin in your mouth is a definite no-no :ph34r:

1

Share this post


Link to post
Share on other sites

Hi Allisont,

I want to say ditto to everything mushroom said. :) I'm also supersensitive to soy as well as gluten and I've developed what appears to be a true dairy allergy in the last year. So I can related to the frustration. But as far as the continued malabsorption issue(s) I had a similar problem for quite a while. I finally began seeing some significant changes after about 6 months on a strict paleo diet (85% fish/seafood, poultry, beef, other meat and limited raw veggies/15%), taking high doses of probiotics, prescribed high doses of D3 (8000-10000 IU/day), and sublinguial B12. I saw additional improvement after starting treatment for hypoadrenia (low adrenal function which doesn't meet the 'lab' ranges for Addison's disease). I finally stopped losing weight due to malabsorption (a mixed blessing), and a number of my other malabsorption related issues have gradually (mostly) cleared up (neuropathy, some memory issues, muscular issues, fatigue). My hypoglycemic/hyperglycemia (Dr. said I was looking borderline diabetic with my swings in blood sugar) issues resolved within three weeks of switching to the paleo diet.

0

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
      106,145
    • Total Posts
      929,172
  • Member Statistics

    • Total Members
      63,563
    • Most Online
      3,093

    Newest Member
    Dawne A. Moore
    Joined
  • Popular Now

  • Topics

  • Posts

    • You are not crazy!  There is something wrong.  Keep advocating for your health.  I am glad your Mom will be with you.  
    • Welcome Tina! This is a pretty old posting so I will respond.  What were your other celiac panel results?  Did they do the TTG IGA?   I had a very elevated IGA test (checked for IGA deficiency which for celiac tests validates the result).  It can mean that you have some autoimmune disorder going on.  I already had Hashimoto's thyroiditis, so no surprise there (not to mention lots of allergies).   I tested negative to the TTG IGA and TTG IGG, but my DGP IGA was positive.  It was the only positive.  My biopsies revealed moderate to severe damage.  I have both Hashi's and Celiac disease. http://www.webmd.com/a-to-z-guides/immunoglobulins#1 Soon, you should know where you stand.  Keep eating gluten until all testing is complete.      
    • Hi Rob and welcome  You have found a good site with a supportive community! Celiac can be difficult to diagnose because it can affect so many different systems in the body. There are links to further info and some hopefully useful answers to common questions in this topic:  That said, I tested negative for celiac via blood and endoscopy but some people do not show up on the test for many reasons, but gluten is still a problem for them. It certainly is for me! Non Celiac Gluten Sensitivity is one catch all term for such people. So...  I think your friend is on the right path. I'm sorry if he's not able to access medical care as it would be much better to diagnose this via a doctor and exclude anything else, or identify any other conditions should he have them.  However there's no treatment if he does have it bar STRICT adherence to a gluten free diet. He could try keeping a food journal listing what he ate, when and how he felt. I did and managed to track down the above symptoms along with a LOT more. Gluten was giving me chest pains, eyesight issues, anxiety, depression, balance issues, palpitations, nerve twitches etc etc. I only began to identify them all by keeping a journal and your friend could do that and follow the diet to see if he can get some answers for himself.  Best of luck to him and yourself    
    • Has anyone had any answers regarding this?  I too had an Elevated Total IGA results but normal tIGA IgG.   Having most of the symptoms of celiac disease but can't go gluten free until after my EGD test has been done.  Which isn't for three weeks.   I'm curious what the other people with these results found out.   My Dr seemed to think I was gluten intolerant but I can't seem to find any resources to back that up. 
    • If you are eating gluten free all testing will come up negative. That's blood draw, endoscopic biopsy AND dh biopsy.
  • Upcoming Events