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

[jerseygirl221]

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

[Albion]

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.

[Lori2]

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.

[New Community Member]

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!

[New Community Member]

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.

[AVR1962]

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.

[Albion]

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, Open Original Shared Link 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!