• 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
0
jerseygirl221

Sick And Tired Of Feeling Sick & Tired......

Rate this topic

Recommended Posts

Just a warning.....this is kind of a rant. I was diagnosed with Celiac on 8/31/11. I started my gluten free diet immediately. I have been glutened twice, both times by foods labeled as gluten free. It has been about a week or so since my last episode, and I started to feel better. Now, the past 3 days, I feel bad again. I have scrutinized every thing I have eaten, and I have not consumed any gluten. I have been grocery shopping, and ended up with hives during my shopping trip-this has happened twice. I was at a class on Thursday with a co-worker, and she was eating pretzels......we had a chair in between us, but her pretzels were on that chair. I have been having D ever since.....Could I be that crazy hypersensitive??? My doctor said my damage on my endoscopy/biopsy was patchy....which he said is a good thing, as far as my healing time.

I am so tired of this. I thought I was supposed to be feeling better.......I just want to cry. My husband and I are leaving for a little getaway to Disney World for a few days on Monday, and I don't even feel like going....I feel sad, angry, upset, and just plain tired. Does anyone have any advice for me, how to get through this. I know the end result will be so worth it, and I know that I am doing the right thing by staying gluten free, but sometimes I think-for who for what?!

Help me.........sorry for the rant :(

Share this post


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


Hi,

I hear the despair in your voice so clearly!

I am so sad to hear how tired and sick you are feeling! I have just been diagnosed myself and maybe have a few tips that seem to be working. My naturopath told me that right now our livers are working very hard to detox and that we need to be extra careful in the short term. Her suggestions were a very low fat, low sugar diet. Fats are sugars are processed in the liver--and our livers are already working over time! I find eating a piece of organic fruit sometimes kicks up some symptoms. I am trying to eat just lean meat and vegetables for a month. Even though the packaged, gluten-free cake mixes etc. are safe, they can exacerbate the situation just by being rich or sugary. They hopefully will be safe at some point soon, but for me not right now.

My allergist also told me for the short term to stop exercising. (I was running about 5 days a week about 4 miles each time). He said since this is a malabsorption condition, asking my body to run on what little it is able to absorb was too much.

This is just what is working for me, so please do not take this as medical advice. Check with your provider... My naturopath put me also on an allergen-free l-glutamine supplement. (Made from pea and rice protein). Here in Connecticut is is called Vital Clear. The taste is marginal, but I take it 2x a day like a prescription. For me, it has realy accelerated the recovery.

It isn't forever, (or so I need to tell myself now), but for me a strict elimination diet is what is working for right now.

Please know that we are all here and concerned about you. You are not alone.

Share this post


Link to post
Share on other sites

In trying to determine what food has caused your reaction, you really need to keep a food journal. It wasn't until I did that I realized I was not reacting to foods I had just eaten, but to foods I ate three days earlier. I have also started keeping track of different brands and keeping labels for reference. Some day I will get it all figured out.

Share this post


Link to post
Share on other sites

I am trying to eat just lean meat and vegetables for a month.

It isn't forever, (or so I need to tell myself now), but for me a strict elimination diet is what is working for right now.

Hi, I'm kind of in the same situation and I was just wondering if you're eating meat and vegetables even for breakfast? What else are you eating in the elimination diet? How long have you been on the elimination diet and are you feeling much better? I might just have to do that...I've been gluten-free for a month and am not feeling much better.

Also, it's interesting that you mentioned something about our liver working extra hard. My ribs have been tender recently, too, and I googled something that mentioned "liver energy congestion". Interesting. Helps explain why I'm still feeling bad.

Thanks!

Share this post


Link to post
Share on other sites

Just a warning.....this is kind of a rant. I was diagnosed with Celiac on 8/31/11. I started my gluten free diet immediately. I have been glutened twice, both times by foods labeled as gluten free. It has been about a week or so since my last episode, and I started to feel better. Now, the past 3 days, I feel bad again. I have scrutinized every thing I have eaten, and I have not consumed any gluten. I have been grocery shopping, and ended up with hives during my shopping trip-this has happened twice. I was at a class on Thursday with a co-worker, and she was eating pretzels......we had a chair in between us, but her pretzels were on that chair. I have been having D ever since.....Could I be that crazy hypersensitive??? My doctor said my damage on my endoscopy/biopsy was patchy....which he said is a good thing, as far as my healing time.

I am so tired of this. I thought I was supposed to be feeling better.......I just want to cry. My husband and I are leaving for a little getaway to Disney World for a few days on Monday, and I don't even feel like going....I feel sad, angry, upset, and just plain tired. Does anyone have any advice for me, how to get through this. I know the end result will be so worth it, and I know that I am doing the right thing by staying gluten free, but sometimes I think-for who for what?!

Help me.........sorry for the rant :(

I was diagnosed just a little bit before you (8/27). Like you, I started to feel better the first week it seemed. Then, all my symptoms seemed to go back as if I wasn't gluten free. It is so frustrating. They say it takes time....just stick with it. Are you on a lactose free diet, too? If not, you might want to check that out, since newly diagnosed celiacs can't tolerate lactose either. I may have to go on a strict elimination diet - that's tough stuff, but it seems like it might help. I feel the same way as you, it's so hard not to be angry about it. Also, I don't really think the pretzels situation is what triggered your symptoms back again. I could be wrong, but if we don't ingest it, it shouldn't bother us. I was reading somewhere that our intestines are like 23+ ft., so no wonder it might take longer than a month to heal. I feel your pain. Hang in there! Hopefully going to Disney World can get your mind off of celiac for a few days.

Share this post


Link to post
Share on other sites
Ads by Google:


You could very well could be reactioning to something else besides glutens, common reactions are to dairy, high fructose, soy, and some can't have other grains. I would suggest you keep a journal, go to a raw/natural diet as much as possible trying to get nutrients into your system. Being so sensative right now it is important that you focus on healing. You may find certian foods will not set well, may seem like they are not digesting properly, it is a process. I had to be careful not to take in too much meat at one meal and I noticed my stomach was not agreeing with something in gluten-free bread and cookies so I found foods that I could eat, mostly salads with a little meat. I went to a low acidic diet which you can look up, acidic foods are hard on an already depleted system.

Share this post


Link to post
Share on other sites

Hi, I'm kind of in the same situation and I was just wondering if you're eating meat and vegetables even for breakfast? What else are you eating in the elimination diet? How long have you been on the elimination diet and are you feeling much better? I might just have to do that...I've been gluten-free for a month and am not feeling much better.

Also, it's interesting that you mentioned something about our liver working extra hard. My ribs have been tender recently, too, and I googled something that mentioned "liver energy congestion". Interesting. Helps explain why I'm still feeling bad.

Thanks!

I have been off gluten for 10 days and on the elimination diet for 4 days; I am now taking supplements to balance out what I do not get in the food. I do eat chicken for breakfast with some carrots or potato. Or I mix up the Vital Clear I was given by the naturopath. For the immediate future I am eating only organic vegetables and lean meat. My appetite is still so off that I can't work up enthusiasm over any food, so right now one is as good as another. I am hopeful that will change.

My most painful symptoms are/were the skin burning, nausea, weight loss, and (emotionally painful) my hair falling out. The gastric symtoms were something I had grown used to over the past year and seemed to come and go. My skin is feeling meaningfully better and I had no PMS this month, so the 10 days without gluten is making a tiny difference even this early.

I found this website, http://jennifer-andrews.suite101.com/how-to-detox-from-gluten-a357043 and followed the instructions there since they were in sync with what my naturopath was telling me. What stuck out from the detox plan here was the sentence "avoid excess fat and sugar since the liver is working hard...." From what I read here, in the short term, fat and sugar slow the detox process down. (We would skip step 4 on the plan here because we will not eat gluten again!) So we are getting better, it's just that sugar and fat give our liver extra work to do.

Right now my main detox symptom is unbearable anxiety almost all day. I read here that such a symptom is common and I am trying to be patient. Reading the forum here is very helpful and I have friends who know and talk me through.

We are here for you!

  • Upvote 1

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
      108,424
    • Total Posts
      941,206
  • Member Statistics

    • Total Members
      66,350
    • Most Online
      3,093

    Newest Member
    Celeste McGee
    Joined
  • Popular Now

  • Topics

  • Posts

    • I am worried about the cost but I think having that test done would help me rule things out. Either way I need to see a G.I my issues are getting out of control.
    • Thank you for all the information. I am sorry for the late reply to everyone. I have been feeling worse and worse lately. Got the blood test results, it came back negative. Seeing a G.I specialist in three months (too long for me :/) I've been keeping a food diary and realize I feel worse after eating gluten. After the G.I I want to start the diet. I'm going to call him and see if I can get seen sooner. The bloodwork said theres no signs of inflammation and they don't suspect it to be autoimmune but they want me to do the diet anyway. I wish I had answers because my vision is getting worse, cramping, nerve pain and trips to the bathroom are amplifying. Meh. Also I have a vitamin d deficiency so I am taking d3 2000iu with vitamin b12. Thanks for the help! 
    • I'm sorry you are dealing with this. My son deals with food intolerances that are not identified by any biomarker as well. I hear the same response from doctors in that, "if the food makes him feel bad then it's probably best to avoid the food." (Thanks for your insight doc!) His symptoms are not dermatological though. His symptoms are mostly neurological and psychiatric with some bloating and mild digestive issues. He loses his mind quite literally if he digests gluten. Also develops what is known as a stereotypy, involuntary movement of hands. He is otherwise a normal child. We are unable to obtain any kind of diagnosis though.  I know you're avoiding a lot of foods right now, but don't get discouraged. It's just a way of life and you're doing the right thing. Right now we are avoiding foods such as soy, all types of grain, chocolate, dairy and nightshades. I have limited his iodine intake as well. I have personally found that gluten, iodine and soy cause intensely itchy blisters and joint pain for me. Perhaps have you tried cutting back on iodine intake?
    • It is entirely possible to get a safe meal at an airport.  I always go to the high end places and that makes a difference.  I have no idea what they have at LAX but Legal Seafoods, if they have one there, is ALWAYS safe because they follow strict protocol for Celiac dining. I ate at the Boston one on my Colorado trip in October and it was excellent and I never had a problem.  The menu is limited for gluten-free at an airport but who cares......all I wanted was a safe meal and that is what I got. The baked fish was delicious.  They even had gluten-free cracker crumbs for the topping but that is Legal's...they do good work for the Celiac community.  The manager oversees the meal prep for food allergy folks. In Denver, there was a Wolfgang Puck's for breakfast. They had prepackaged fruit salads which were very good.  I took a leap of faith and asked the server if they could make me a gluten-free omelette, in a separate clean pan and they were very accommodating.  They had an open kitchen so I could watch them make it.  I could not order the other stuff that went with it but the omelette was delicious and I never had a problem. It can be done but you have to be careful. There was a place that advertised gluten-free sandwiches in Denver.  You could see the guy making the sandwiches. I ran from that place because there was bread all over the place and no way could they make that space safe for a Celiac.  A lot of the places had open kitchens so you can watch what they do and that makes a big difference.  Check out the restaurant listings on-line as they are listed. Have a great trip!
    • You are a nice person, Ennis, to do this for Thanksgiving!  If I were in Texas, I would feel safe eating your food and it sounds delicious! To have an allergy safe meal served in a church is a wonderful thing. 
  • Upcoming Events