I'm sick of feeling like this!

[Momma2PirateNPrincess]

I've been gluten-free for almost 3.5 weeks. The first couple weeks were rough but last week I was feeling pretty good. My skin was clearing, I wasn't off balance, headaches gone, had a little more energy and sleeping better! Then over the weekend and especially today it's like pre gluten-free   I haven't eaten gluten and although it could be cross contamination I haven't really worried about it so probably was at some point without showing issues. So what's wrong with me??? 

[Sweetea888]

1 hour ago, Momma2PirateNPrincess said:

My guess is that you have ingested gluten. It is hidden in lots of things...salad dressings, seasonings, some condiments,  I ate out on Saturday and ate off the gluten free menu. I asked about all the ingredients and I was satisfied that there was no gluten. I was told that the French fries were cooked in a separate vat. Still, I felt terrible Saturday night and all day yesterday. I have been gluten free since 2006 and I have learned when I get gluten unknowingly. I would eat at home for a few weeks or take your lunch to work, if that is a problem. And, at holiday parties, I would stick to fruit, vegetables, and cheese - if you know the cheese is gluten free. Stick with it. There are MUCH better options than there were 9 years ago!

 

 

[JT]

Hi. I saw your post and wanted to respond. I was searching gluten free makeup ( yes I am that sensitive) and saw your post. 

I have been gluten free/milk free for almost eight years. So is my husband , and my son was born intolerant as well. It is a challenging and frustrating task. However, it will get better and easier. You need to do your research because gluten is everywhere! Soaps, lotions, medications, vitamins, nuts, cough drops,mints,gum....my rule of thumb is if it goes in your mouth or on your body...you need to check it out first. 

Cross comtamination is a very real concern. I rarely eat out because I got sick so often it just wasn't worth it. I can also only buy certain meats because often they use "spices" or chicken broth (which many have gluten) in the packaging process. The other thing I have found is just because it says it is gluten free doesn't mean it is.  I usually go with certified gluten free products  or products I am familiar with and know are safe. Many individuals do not understand gluten and claim their products are safe when they may not be.

the upside to all of this--- it gets easier  and when you are truly gluten free life becomes considerably better  You feel so much better and are so much happier. That depressing, overwhelming feeling goes away.  My husband swears his arthritis pain and numbing/tingling go away when he is very careful. It's a learning curve. It will get better and you will feel better. You will have accidental slip ups and/or rack your brain because you have no idea where the gluten is coming from. It happens.  It's inevitable, but you will learn with each "gluten" encounter  

This forum/website is a great place to gain knowledge.  I check it often when I am about to purchase something or try something new. I have been using it for years!!! Hence, why I was on tonight and officially joined so I could answer you.  I remember that lousy, frustrated feeling  (we all do) it will get better  

Good luck! hang in there ?

 

 

 

[Darren]

It might not be cross contamination so don't worry too much yet if you know you've been careful. When I went gluten-free about three weeks in I started getting brain fog for no reason I could determine. After a couple more weeks it went away and I hadn't changed a thing. The body takes a while to go through gluten withdrawal and I believe that's what i had and might be what you are experiencing. You are still very early in going gluten free so expect wierd feelings to happen for a little while longer, I've read that many folks go through. Just keep being careful and see how you feel in a couple more weeks. I won't be surprised if you find you feel fine. Hang in there, you can beat this damn thing!

[squirmingitch]

I'm betting on gluten withdrawal. 

[bartfull]

12 hours ago, squirmingitch said:

I'm betting on gluten withdrawal. 

I agree!

[manasota]

Momma, Momma, Momma,

Unfortunately, the Celiac healing curve is just like all healing curves.  The darn thing does not just keep going up.  It goes up, then down, then up a little, then down a little, then up a lot, etc.

There's nothing wrong with you.  We all go through it.  You know all that patience you give to your little Pirate and Princess?  Just try giving a little bit of it to yourself.  You deserve it!

Hang in there!

[Momma2PirateNPrincess]

Thank you all so much! You made me feel better. It just stinks to see a glimmer of light then bam just like that it's gone again. I've been off balance again, exhausted, headaches and irritable  I know I need to give it more time but as you all know, it's so hard! I just want my life back!!! 

 

It's difficult for me because I never had true symptoms of gluten issues. Then 5 months ago something hit me and I was a wreck! Anxiety, insomnia, acne, weight loss...it all came on at once. So now if I do get gluten I don't have the traditional stomach issues so it's hard to tell what's bothering me 

[squirmingitch]

For what it's worth the same is true of me. I don't know immediately when I've gotten glutened. it takes a while because I don't get the gut symptoms right away. In fact, the gut symptoms are the last thing to present with me.

Know too, that as time goes on, your symptoms of a glutening can change & present differently.

I'm going to be brutally honest here & tell you flat out that the 1st 6 months can be a real roller coaster -- even the 1st year for some; your mileage may vary.  Just so you know okay?

Hang in there. The good thing is that you at least get glimpses of how good life can be & you will be able to look forward to when that is the norm all the time. And just think; we could be having to do chemo or radiation or take a bunch of pills every day but we only have to not eat gluten. Not so bad when you think about what a lot of people with ills go through. Not to say you can't still pitch a temper tantrum or have a pity party. It's allowed -- we've been there, done that.

[manasota]

Momma,

I have absolutely NO idea when or if I've been glutened in the 6 years I've been attempting to be gluten free.  NO idea.  My symptoms vary widely and come and go with seemingly no rhyme or reason.

I had been blaming myself that since I was not well yet; I MUST be failing at being gluten free.  Beat myself up--a lot.  But...due solely to the encouragement on this site, I went to a new GI doc who tested me and verified that I am not getting gluten and that I do have healing of my precious small intestine.  (Darn, fragile thing that it is.)

So, if you continue to be in doubt about your success at being gluten free, PLEASE get the recommended annual testing!  I cannot recommend it highly enough.  (I had always thought that I didn't need the follow-up tests because no matter what the result, there was NO way I could do any better.)  I was wrong in not following up.  Now, even though I'm still not well, I don't have to blame myself!

I owe it all to this site (& Kareng) that I have had a big weight lifted off my back.

My advice is to just keep doing your best and to keep reading the posts here!!  And, of course, try to be patient and loving with yourself.  (Remember to treat yourself as well as you treat your Pirate and Princess!)