The Price Of A Mistake...

[jewlesD]

I am so frustrated. I spent the the night in the ER ( for the 3rd time in 2 months) with uncontrollable vomiting, diarrhea and stomach pain that was almost unbearable. Thankful they always fix me up good, but i am so frustrated that a mistake in my diet leads to such a violent reaction. This reaction is what led to a diagnosis for me, and I have been doing so well since diagnosis. tonight me and my husband attempted to eat out. I thought I was being so careful...guess not. My husband is so patient and so kind to me, but I am the one getting so tired of getting so sick and spending time in the hospital. I will NOT be eating out again for a very long time...I am just so frustrated and discouraged...it is awful being that violently ill and I cannot handle the thought of this happening every time I mess up, especially since its never on purpose that I am choosing to feel this way. Thanks for letting me rant...this is harder than I thought and the consequences are far greater than I ever imagined possible.

[Live2BWell]

Wow ~ I am sorry you get so sick with mistakenly eating gluten. I get sick, which is bad enough, but I do not get nearly as sick as you, I couldn't imagine. I am glad that the ER got you on the up and up, hang in there (( Hugs ))

[gfp]

jewlesD

You are doing everything correctly.

Your reaction is extreme.... but there is a good chance you will recover slowly and the reaction will be less pronounced.

HOWEVER: Things can get worse for a short time before better.

Meanwhile:

I strongly urge you to read up on cross contamination and hidden gluten if you didn't already.

A lot of people on this board (well actually a small minority) don't like me because I advocate a strict gluten free diet and this burst's their bubble. They like to pretend at being gluten free and don't like being told McDo's fries are not gluten-free and some hard liquor contains gluten etc. .

You are just going to have to ignore these people.... people like you are the reason I stick to my strict stance (along with long term risks) (I also have a friend gets seizures with a trace of gluten)

Your hubby sounds incredibly supportive.... he is your biggest asset to help you through this.

Make sure you tell him because he will have to help more....

Sorry to have to bring the news but....

You need to degluten your kitchen completely.... as a minimum get rid of the toaster (it can't be cleaned) and all stainless pans need a real thorough scrubbing ... etc. and throw out/give away all gluten in your kitchen.

Your hubby needs to be very careful if he eats gluten outside. He really really needs to clean teeth, mouthwash and clean again before kissing... preferably he should have 2 toothbrushes (one for after gluten)...

With your reaction .... don't take chances. Can you buy 100% raw ingredients? Do you like to cook? (Even if you don't its not as hard as some people seem to think and I love cooking if not cleaning and washing up after )

You might consider going soya and dairy free as well for a time. In my opinion this doesn't need to be in the same way as gluten-free. You just need to avoid them... many people find this helps the healing process.

I'll be up front, I didn't but reading other peoples experiences I wish I had!

After 3 months or perhaps longer you should have repaired ... if you have celiac disease not a wheat allergy then you will probably be able to risk some experimentation, perhaps eat out etc. but at least for now... SAFE is better than hospital.

Hugs....

[jewlesD]

Thank you for the input. My husband is pretty much willing to do whatever it takes to keep me outta the hospital so I will suggest some more practical things for him...as far as cooking, its pretty much all I do! I like to cook and have found some great recipes and things to try...its only been the times I have NOT done the cooking that I have gotten so sick. I guess I never though I would be "one of those people" who feels nearly dead when ingesting some sort of item containing gluten. After tonight I was just so frustrated and discouraged because getting that sick is not something I would wish on my worst enemy, yet it keeps happening no matter the precautions I think I am taking...I am really a bit gun shy of anything I eat now that I did not physically make for myself. I just had no clue what the implications and fallouts comes with having celiac but the truth is I just need to everything in my power now to protect myself and keep my body healthy no matter how strict or rigid it might seem to other. This forum has been such a life saver, and eye opener and generally a good support for what occasionally feels like an uphill battle. I have so much respect for people who have done this for years and years and those with chronic illness always trying to manage it....what amazing people.

[ravenwoodglass]

Thank you for the input. My husband is pretty much willing to do whatever it takes to keep me outta the hospital so I will suggest some more practical things for him...as far as cooking, its pretty much all I do! I like to cook and have found some great recipes and things to try...its only been the times I have NOT done the cooking that I have gotten so sick. I guess I never though I would be "one of those people" who feels nearly dead when ingesting some sort of item containing gluten. After tonight I was just so frustrated and discouraged because getting that sick is not something I would wish on my worst enemy, yet it keeps happening no matter the precautions I think I am taking...I am really a bit gun shy of anything I eat now that I did not physically make for myself. I just had no clue what the implications and fallouts comes with having celiac but the truth is I just need to everything in my power now to protect myself and keep my body healthy no matter how strict or rigid it might seem to other. This forum has been such a life saver, and eye opener and generally a good support for what occasionally feels like an uphill battle. I have so much respect for people who have done this for years and years and those with chronic illness always trying to manage it....what amazing people.

I hope you feel better soon. GFP is not the only one here who believes the best way to start out is as strict as is humanly possible. It is better to go through the inconvience of being so very strict and then after you have been feeling good for a bit you can add in risky stuff. That is the best way to know for sure just how sensitive you are. Hang in there.

[ShayFL]

Best wishes for staying well. I am trying to be very strict myself even though my reactions (vertigo & migraine) dont end me up in the ER. They are no fun. So I am cooking non-stop too. Hang in there!

[gfp]

Thank you for the input. My husband is pretty much willing to do whatever it takes to keep me outta the hospital so I will suggest some more practical things for him..

Your Hubby sounds great.... make sure you do keep him up to date as things change... we all start this journey confused... and sometimes we forget to keep partners up to date... and forget its confusing for them too.

As a guy (like me) your hubby will feel a bit powerless over something affecting someone he loves so much .. keep him as infomred as you can (it's a guy thing)...

.as far as cooking, its pretty much all I do! I like to cook and have found some great recipes and things to try...its only been the times I have NOT done the cooking that I have gotten so sick.

Welcome to the Discovery phase.... you're doing GREAT!!!!

I guess I never though I would be "one of those people" who feels nearly dead when ingesting some sort of item containing gluten.

you and me BOTH .... I though hey, Ive been eating this for 30 yrs... how much can a trace hurt..???

Please ... stick to what your body tells YOU.... do not cave in to those who say ... hey eating outs fine... or gluten-lite is OK...

Its tempting.. non of us got into this by design..most of us started out thinking gluten-free was a simple matter of bread and pasta...

After tonight I was just so frustrated and discouraged because getting that sick is not something I would wish on my worst enemy, yet it keeps happening no matter the precautions I think I am taking...I am really a bit gun shy of anything I eat now that I did not physically make for myself. I just had no clue what the implications and fallouts comes with having celiac but the truth is I just need to everything in my power now to protect myself and keep my body healthy no matter how strict or rigid it might seem to other. This forum has been such a life saver, and eye opener and generally a good support for what occasionally feels like an uphill battle. I have so much respect for people who have done this for years and years and those with chronic illness always trying to manage it....what amazing people.

Keep doing what you are doing.... the light at the end might seem a LONG LONG way away but its closer than you think!

As your health improves with the gluten-free diet you will find each day gets easier until that light is suddenly right befoe you and you wonder how you missed getting so close!

[home-based-mom]

Neither my symptoms nor my reactions have ever been severe. They have just been unpleasant enough to make me not want to repeat them. They are also specific enough that I know definitively if I've been glutened.

Nevertheless, I basically don't eat things prepared by others because they don't "get it." It is just safer to take your own food or eat before you go. Beats the heck out of a night in the ER!

You are indeed blessed to have such a supportive husband. If you read enough on this forum you will discover that some live with people who neither believe nor support them, and some actually live with sabateurs.

Also if you don't know exactly what sent you to the ER all three times, post what you ate beforehand. Perhaps others might spot a potential culprit.

Hang in there - it does get easier!

[whitball]

I am one of those people who read a post about McD's french fries and believed that they were gluten free. I ate a large order and had the exact same reaction as you had. I vomited and had the D for several hours. I was miserable. I had a similar experience at the Outback when I ordered from their gluten free menu. So after many bad experiences from eating out, I do not eat out at all and am trying to become strict with my diet. Hope you can figure out what caused you to beocme so sick. Good luck!