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

Well...it's Been A While, But I'm Miserable :(
0

5 posts in this topic

Okay, so it's been a while since I've been on here...mostly because I have been feeling good until the past couple months...So, here is my story, and I'm hoping someone can help...I was diagnosed via blood work then biopsy in February 2013. I've been gluten free since biopsy...with the exception of accidental glistenings and CC. After approximately 2 months on the diet I began feeling AMAZING! I didn't know what to do with all the new energy! Then, I think I began getting a little too "comfortable". I began eating lots of junk really...chips (that were not listed as gluten-free even though no obvious ingredients indicated gluten), chocolate, candy...JUNK! I was also eating a ton of frozen steamer vegetables, which I later found out that that brand states "they can not guarantee that food was not cooked on same line as wheat products". I eat a LOT of baked potatoes (maybe I have a problem with those??) Anyway...I now have proclaimed to not eat ANYTHING unless it is says gluten-free on ingredients. But I still feel so bad. My energy level is virtually non-existent. And it's worse late afternoon/night but not sure why? My joints just ache so bad and the fog/depression set in at night too...Stomach problems aren't my main issue right now. I just need some strength and for my muscles and joints to feel better. I would love to hear anyone's story and to hear suggestions?? Like vitamins you take and love, etc?? I might add I have a 3 year old, 2 year old and 1 year old...I need a "pick me up".

0

Share this post


Link to post
Share on other sites


Ads by Google:

*glutenings not *glistenings LOL...Stupid autocorrect on my phone.

0

Share this post


Link to post
Share on other sites

When was the last time you were tested for deficiencies? What does your result panel look like? 

 

I would cut out that junk. At least for a few more months and then slowly introduce it as you know you can tolerate it. I know it sucks and you probably want to get back to a normal life as soon as possible but it's hard to say what could be causing you problems in all that junk. If you feel better off of it then it should probably go for now. I take a strong multi-vitamin with iron (pre-natal) but I wouldn't go taking anything unless you have a valid reason. Do you have a doc you see regularly? He can check your levels and tell you what you need or what you're missing. 

 

I hope you feel better and I know CC and glutenings suck. 

Take care, my friend. 

1

Share this post


Link to post
Share on other sites

Just  get  back on  tract, clean  wholesome  gluten-free  foods. And  stick to it....its okay  to  have  a few  snacks &  sweets  now &  then  as  a  treat  but it  isn't  good , only for  weight  gain  to  eat  these  type  of  foods  gluten free or  not...

Think  WILLPOWER.......

feel better  soon....

1

Share this post


Link to post
Share on other sites

Hey I haven't been tested for deficiencies in approx 2 months, but I was still a little vitamin D deficient at that time...it's just so hard to pinpoint everything, which is so frustrating...and non-Celiacs just don't understand...I'm dealing with that too. I do have a doc I'm seeing...but I am his first celiac patient. Awesome! NE Mississippi is quite behind...

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
      104,116
    • Total Posts
      919,451
  • Topics

  • Posts

    • 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!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,155
    • Most Online
      1,763

    Newest Member
    AndiR
    Joined