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I Am Soooooo Frustrated

Harley9999

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Harley9999 Newbie
Harley9999
Posted

Hi Everyone

Sorry ahead of time for this but I cant take this anymore. I was diagnosed with Celiacs in October 2009. It was overwhelming at first and seemed like the worse thing in the world. Food used to be my life. I loved to eat anything and everything. I slowly became used to being so different from everyone else.. or at least tried. I dove into my new way of living and really tried hard. Now here I am 9 -10 months later and I STILL seem to get glutened...alot. What is so frustrating is that I try so hard. I NEVER intentionally cheat and eat things I know I cant. I eat alot more fruits and veges (more than I ever had). Yet I STILL keep getting glutened and I am about at the end of my rope. I wanna cry. I wanna scream that its not fair. I want my old life back! I am soo sick of reading labels, not being able to eat out and am just tired of being the "freak" in the family. I feel like there isnt anything safe. I tried to stay away from maltodexterin...but then I hear it is safe. Must be not for me because I get glutened from it. I had some gluten free pizza the other night and was so happy until the next day when I almost didnt survive the drive into work. I had to RUN to the bathroom. (sorry for TMI). I really want to say forget this and eat what I want but I know that i would pay so dearly and would not be able to function once the joint pain, headaches, muscle cramps and fatique kicked in! This is just a CURSE!!!!! I dont want this life anymore!!! I'm so sorry to rant on. I am usually a person that handles obstacles and looks on the positive side but I just cant seem to deal with this anymore!!! Thanks for listening. I know there are people who can relate to this and sorry again to sound like a big baby :(

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Hey, so sorry you are still struggling so bad. I've only been doing this for around 6 months but I too still get glutened unintentionally. I still love food though, I have just learned to love different types of food. Do you like to cook? Almost all of my glutenings have come from eating food prepared by others or trying a new product. Maybe you should avoid eating out and make everything at home for a while? Is everyone in your home gluten free as well? Some people find it really, really hard to stay gluten free if the rest of their family is eating gluten. You can't make them go gluten free at home for you, but maybe we can help you think of ways you can separate out your stuff better to avoid cc. Hope you feel better soon!

psawyer Proficient
psawyer
Posted

Have you considered the possibility that, in addition to gluten, you may have one or more other sensitivities?

Lactose intolerance is common in the early stages of recovery, and diarrhea is the most common symptom. Intolerance to casein (milk protein) and soy are also common among celiacs. Your gluten-free pizza probably had casein.

ravenwoodglass Mentor
ravenwoodglass
Posted

Your getting sick from the pizza may provide an important insight. Was there cheese of that pizza? You may also, and I know you don't want to hear this, need to give up dairy for a bit. Do it and see if it helps. Another thing you may want to watch out for and delete for a while is soy. I thought I was being glutened for a long time by stuff that was gluten free and it turned out to be the soy that was in so many things. Give up the dairy and the soy for a while and then after you have been feeling better for a while add them back in one at a time at least a couple weeks apart.

Harley9999 Newbie
Harley9999
Posted
  • Author

Thanks for the advice. Congrats on 6 month gluten-free. Its hard. Yes I do cook but I work full time and have a household and two kids so sometimes time is the issue. I realize everyone has a busy life and its time management.

I am the only Celiac in the house and everyone else eats everything. My husband is really supportive but he will not go gluten free and I cant say as I blame him. When I do make meals from scratch... I always feel better. Guess I'm just frustrated because we all used to go out to eat ALL the time and enjoyed it... but times have changed. Thanks again for the support

~H

Harley9999 Newbie
Harley9999
Posted
  • Author

I am now strongly considering that it is another food allergy as well. I will research more and hopefully get some answers. Thanks

~H

Harley9999 Newbie
Harley9999
Posted
  • Author

Thanks for the advice. You could possibly be right about the soy and or dairy. When you had reactions to these things, was it the same as when you had been glutened? It feels very similiar to me.

~H

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ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for the advice. You could possibly be right about the soy and or dairy. When you had reactions to these things, was it the same as when you had been glutened? It feels very similiar to me.

~H

Until I had fully healed yes they did feel very similiar. Once I had fully healed I realized that soy doesn't give me the same neuro issues and it's reaction doesn't last as long as gluten reactions do.

Becci Enthusiast
Becci
Posted

I agree with Peter... I was sensitive to Casien for a while after going Gluten-Free... Try cutting out dairy and see if it helps.. Or do a food allergen test... Try not eating a certain 'allergen' for a while and see if you feel better. If not, then go to another allgergen, etc, etc, etc...

It helped me! But, once I started healing, my sensitivity to casien slowed and now I don't have any problems with it.

Have you considered the possibility that, in addition to gluten, you may have one or more other sensitivities?

Lactose intolerance is common in the early stages of recovery, and diarrhea is the most common symptom. Intolerance to casein (milk protein) and soy are also common among celiacs. Your gluten-free pizza probably had casein.

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