Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

14 Weeks gluten-free And No Significant Change Yet...Is This Normal?
0

7 posts in this topic

I have done this diet strickt for 14 weeks now and notice little if any change. I am wondering if anyone else has had similar experiences. Most people I have heard of have some change in a couple of weeks, even if minor...

My biopsies for the last 5 years or so have always been negative for celiac but my GI wanted me to try Gluten Free becuase of my symtpoms and because the anti-gliadin test was positve many years ago. However, the TTG test was recently negative, as well as biopsy- and i hadn't yet started the diet. I want to give this up, but I wanted to see others experinces first and I wanted to give it a long enough trial.

Just for back ground- I had lost 17 pds in last year, developed neurological symptoms, skin rashes, joint issues, etc...after 14 weeks, still have all those things, and only gained 1 pound and I think its becuase I am eating so much meat now! :)

Any feedback would be appreciated.

jennifer

0

Share this post


Link to post
Share on other sites


Ads by Google:

There is a huge difference between "no significant change" and "no change at all".

Two questions:

1. Are you certain you are completely gluten free with no contamination? New wood cooking things (cutting boards, spoons, etc.), new colander, no shared scratched non-stick pans, no shared condiments, no hidden gluten in food items (soy sauce, etc.) or other items (hand lotion), no oats, and no eating out?

2. Are you noticing ANY changes? Not just in symptoms you started with, but in any other area?

0

Share this post


Link to post
Share on other sites

You are absolutely right to stay on the diet. I am sure your GI has told you, but you can have blood tests and biopsy's come back negative for Celiac, and still have Celiac.

If Celiac is the issue, 1st) your body must heal 2nd) your body can then utilize the nutrients you feed it and 3rd) only then can your WHOLE body begin to experience relief. It is slow and gradual healing, with slow and gradual relief. Give you body at least 14-months for this process.

Have you had your thyroid checked?

0

Share this post


Link to post
Share on other sites

Hi Tiffany, I have been super strict- following it to a T and no eating out- no lotions, no new cutting boards etc. No sauces ever- I am eating chicken and white rice and steamed veggies, and potatoes and gluten free pasta- and more veggies- I never add any sauces to anything- no soy sauce- no msg- no anything... I have not cheated even once. I follow the food list on this web site of the safe ingredients and cook at home.

And as far as the change- I can't say that I really feel anything- at first I thought maybe my skin may have gotten slightly more clear- but my spasms, bloating, joint pains, rashes, neurological issues, etc- no better. I dont' even feel like I have more energy like some friends have told me when they go gluten free. I would have thought that if I had it bad enough to cause neurological symptoms that it would have showed on biopsy one of these times.?

I did read on this site about the genetic testing and I think I am going to ask my dr about that today...any experience with that?

In my gut, no pun intended, I just feel I should have felt more by now...

0

Share this post


Link to post
Share on other sites

Iamgf: I have had my thyroid checked a million times, and they did a spinal tap to check for MS- they put me through the ringer! My GI told me he did not think I needed to continue because I had not gained any weight but I still kept on a little longer cause I wanted to give it a good trial. My rheumatologist said it can often take longer- but when he did the colonoscopy and endoscopy he said the villi were intact and no damage... so I feel so torn about what to do.

0

Share this post


Link to post
Share on other sites




Hi Tiffany, I have been super strict- following it to a T and no eating out- no lotions, no new cutting boards etc. No sauces ever- I am eating chicken and white rice and steamed veggies, and potatoes and gluten free pasta- and more veggies- I never add any sauces to anything- no soy sauce- no msg- no anything... I have not cheated even once. I follow the food list on this web site of the safe ingredients and cook at home.

And as far as the change- I can't say that I really feel anything- at first I thought maybe my skin may have gotten slightly more clear- but my spasms, bloating, joint pains, rashes, neurological issues, etc- no better. I dont' even feel like I have more energy like some friends have told me when they go gluten free. I would have thought that if I had it bad enough to cause neurological symptoms that it would have showed on biopsy one of these times.?

I did read on this site about the genetic testing and I think I am going to ask my dr about that today...any experience with that?

In my gut, no pun intended, I just feel I should have felt more by now...

That's fair - 3 months on a strict gluten-free diet generally ought to show *some* change (though not necessarily complete relief, of course).

I'm not a huge fan of genetic testing. It gives you a clue, but it's like a riddle - the clue is hard to gauge for its real value.

If you've got the patience for it - and it sounds like you do - I would go with something like an elimination diet to see if something else is bothering you. There are LOTS of ways to do an elimination diet, and you don't have to go hard-core right away if you don't want to. In your shoes (and I'm not saying this is the right answer, just what I would do), I would keep gluten out of my diet, and eliminate the next major allergen you suspect. I'd probably go with dairy, myself, but it'd depend on what you generally eat. Leave that out (completely) for a month, see if there are any changes. If none, move to the next (I'd probably go to soy) for another month. And so on.

Yes, it's an experiment, but it's under your control and you can take it any direction you want.

0

Share this post


Link to post
Share on other sites

thanks for your feedback Tiffany- Are genetic tests not accuate? I just figured if both of the genetic tests for it came out negative it would at least exclude it more... maybe I'm wrong...

As far as elimination diets, I don't use soy..I guess the only thing would be dairy, but I dont' think that would cause the symptoms I am having such as the weight loss, stomache spasms and neurological isues. Maybe I am wrong...but I don't have diarreah- more on the constipated side, after some dairy. I could see if it was the opposite, since that would lead to weight loss. I am going to the doctor today to hopefully get a little more direction.

thanks again for your help...

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
      104,118
    • Total Posts
      919,455
  • Topics

  • Posts

    • Hi Anns and welcome   Do you think that I am on the right course to see if I possibly have Celiac?   Yes, it was smart of you to consider the possibility and its good that you've had the tests. Both the aneamia and bloating are symptoms, although of course they may be unrelated. Best way to find out is to check as you are doing.   Can this develope later in life ( I'm 46)?   Yes, I think its most common discovered later rather than sooner.   I ate a meal last night that was gluten free and did not feel like nearly as bloated after eating, would I notice a change that quickly?  Thanksort for your input.   Yes, I noticed far less of a heavy feeling after eating very soon after diet changes. However you would be better off not trying gluten free just yet. I collected some links and other stuff here, it may be of use: Your best bet is to eat as normal and wait for the test results. If your doctors eliminate celiac there's nothing to stop you excluding gluten at that point to see if it helps. But before then you need to keep eating it to ensure an accurate diagnosis.  All the best  
    • Well HIV undermines the entire immune system as I understand it, so that would be akin to using dynamite to put out a kitchen fire! There is some work going on to try and retrain the immune system to not see gluten as a threat though: http://www.immusant.com/docs/ImmusanT DDW Data Release FINAL 5.24.16.pdf  I'm laughing as I write this imagining the conversations you could have with people as you tell them you'd like to contract HIV so that you can eat a decent sandwich        
    • So, I have just yesterday had blood work done to test for Celiac so I am waiting on my results.  This was prompted when my Dr discovered that I was severely anemic and after other testing sent me to  Hematology.  I actually inquired if I could possibly have a gluten sensitive because of the anemia (which has improved with an iron supplement) and feeling bloated after eating and well most of the time actually and after some research I found that this could be a sign that of a gluten sensitivity.   The Hematology Dr also recommend an upper GI.  Do you think that I am on the right course to see if I possibly have Celiac?  Can this develope later in life ( I'm 46)?  I ate a meal last night that was gluten free and did not feel like nearly as bloated after eating, would I notice a change that quickly?  Thanksort for your input.   ANN
    • Yes, the first time you use gluten free flours, it feels like a challenge. ... of a gluten-free living after her elder kid was diagnosed with Celiac Disease. View the full article
    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,159
    • Most Online
      1,763

    Newest Member
    Anns
    Joined