• 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.

On My Third Month Of gluten-free Diet And Getting Worse?
0

6 posts in this topic

Hey guys! I'm kind of looking for some help, support, and advice here. Starting in October of last year, I woke up one morning feeling like I had a rock in my stomach for no reason and I knew something was different. I had a hard time initially describing my symptoms except I felt "full" and didn't know what else to say about it. My symptoms got steadily worse. I got to a point where I could feel hardness when I lay on my back just left of my belly button and when I REALLY pressed down while standing up. I can also feel a very strong pulse there. I had to sleep on my side though I have always been a belly-sleeper because it was uncomfortable to sleep on the lump. After seeing several doctors and having to wait a lot for test results, I was finally diagnosed after a biopsy/endoscopy in early April and have been (trying to be) gluten free ever since. I feel relieved finally knowing what is wrong with me, but I feel like I'm getting even sicker so I'm paranoid that something else could be wrong with me.

 

I can no longer sleep on my sides because I've been experiencing weird stiffness sensations in my sides, extending from my waist down to my hip. My left hip especially feels like it has a rock sitting against it. Sometimes I get weird pressure sensations across my back and back pain. When I try to lie down on my stomach, it no longer feels like specific swelling in my low stomach but like a generalized tenderness from ribs to hips. It also causes my back to break out in a tingling feeling and these weird prickly sensations will last a full day afterwards. I feel like I'm allergic to literally everything I eat. I get D every time I eat vegetables. I get gassy, squishy intestinal feelings whenever I eat cheese. AND THE BLOATING, HARD, FULL FEELING STILL REFUSES TO GO AWAY. I've experienced some headaches and fatigue recently (though I can't really tell if that's just humidity/stress). 

 

I am due for a checkup with my GI and gyno recently so maybe I can get a lot of these questions answered but I am really at the end of my rope. All I want is to feel normal again and I have to wonder why the heck I'm on this diet anyways if it isn't helping me. I'm a very anxious person and the fact that I'm getting worse just leads me to thinking the worst, like cancer and MS. Anyone who has had similar feelings or equally as rough a recovery would be really helpful. I'm just looking for comfort and any sort of advice you could possibly have.

0

Share this post


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

I was diagnosed in December and have just stopped getting sick in the past few weeks. It took a while to figure out where the gluten was hiding and what was making me sick. I'm also dairy and carb intolerant. Too many carbs feels just like getting glutened. Gluten free doesn't mean gluten free. I was still getting very sick from gluten free foods, then my nutritionist put me on only certified gluten free foods or those made in a dedicated gluten free facility. That made a huge difference but I was still feeling like I was getting it somewhere. I changed to gluten free makeup, hair and skincare products and finally started to feel "normal". Maybe you are still getting trace amounts somewhere like I was?

0

Share this post


Link to post
Share on other sites

Hi There,

It took me 5 1/2 months of being gluten free before my stomach pain let up. I am still recovering from other symptoms, but life is much improved without the constant stomach pain. It can take up to 2 years for the small intestine to heal and it seems to take a while for some of us to start to feel better. If you can eliminate dairy and eating out for a couple of months it should help. That is what I did and I saw great improvement. Keep in touch with your doctors about any troubling symptoms you have too. Good luck!

0

Share this post


Link to post
Share on other sites

It is a terrible thing that so many of us get so sick before we get diagnosed.  It takes awhile to learn the diet and it takes awhile to heal.  Some of that anxiousness might go away gluten free.  Try to be patient.  This will take time.  I was very sick and it took me a long time and effort to get better.  It was well worth it.

0

Share this post


Link to post
Share on other sites
Ads by Google:


This sounds a lot like how I felt, especially the constant D with veggies, and the feeling of fullness. It ended up being lymphocytic colitis, and your GI might not be aware that it's more common in those with celiac disease than the rest of the population. He/she might not consider testing you for it, because it's "rare". Unfortunately it takes a colonoscopy and biopsy to confirm, but I can attest that Entocort can alleviate the symptoms almost immediately. Don't give up! Keep fighting for answers! You don't need to feel this way!

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