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Heard Of Celiac Crisis?

sandsurfgirl

By sandsurfgirl
in Coping with Celiac Disease

Recommended Posts

sandsurfgirl Collaborator
sandsurfgirl
Posted

There have been some threads about cheating lately and I feel the need to share this. I have a new GI doc who is really informed about celiac and all the little particulars of the diet. He urges his celiac patients to be really vigilant about everything and avoid CC as much as we can.

He has been treating a patient who had a celiac crisis and almost died. Her whole house was gluten free but she was using some sauce or bouillon that had a hidden source of gluten in it. Not sure if it was a yeast or what.

She went into a crisis where her immune system went crazy. She was hospitalized for an entire month while they kept her stable. Now she is on massive steroids and immunosuppressants to stay alive.

The doc said he tells his celiac patients about this to impress on them the seriousness of what can happen if you aren't 100% gluten free.

You cannot cheat on this diet or you could end up really sick!! Like life and death sick.

We have a poster on this board who has been in a wheelchair because of damage to her brain and severe gluten induced ataxia.

We have a poster on this board whose colon exploded and she nearly died. Last I heard she still had an ostomy bag.

You have an autoimmune disease. When you eat gluten it reacts as if it's poison. I think some may take offense as if I'm lecturing you, but I am sharing this because I don't want you to hurt yourself. I don't want you to end up like that lady in the hospital and on immunosuppressants who has very little quality of life right now.

If you have gluten intolerance or sensitivity I think the same rules apply. The tests are not that accurate. There are lot of false negatives. So I think you don't really know if you have celiac or not and now that you're gluten free you never will. But don't take the chance that it's "just" intolerance and cheat.

Take this as you will. If you get offended I'm sorry, but I don't want to read your posts from the hospital and I feel like I have to share that story that the doctor told me.

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Monklady123 Collaborator
Monklady123
Posted

Good points, all of them. :)

Lori2 Contributor
Lori2
Posted

Appreciate the warning. When you're feeling good, its easy to forget.

Marilyn R Community Regular
Marilyn R
Posted

Thanks for the reinforcer.

I'm never tempted to cheat. I just try to dream up ways to bring my own foods in a seamless fashion, where nobody notices or gets upset. That's my goal.

dws Contributor
dws
Posted

There have been some threads about cheating lately and I feel the need to share this. I have a new GI doc who is really informed about celiac and all the little particulars of the diet. He urges his celiac patients to be really vigilant about everything and avoid CC as much as we can.

He has been treating a patient who had a celiac crisis and almost died. Her whole house was gluten free but she was using some sauce or bouillon that had a hidden source of gluten in it. Not sure if it was a yeast or what.

She went into a crisis where her immune system went crazy. She was hospitalized for an entire month while they kept her stable. Now she is on massive steroids and immunosuppressants to stay alive.

The doc said he tells his celiac patients about this to impress on them the seriousness of what can happen if you aren't 100% gluten free.

You cannot cheat on this diet or you could end up really sick!! Like life and death sick.

We have a poster on this board who has been in a wheelchair because of damage to her brain and severe gluten induced ataxia.

We have a poster on this board whose colon exploded and she nearly died. Last I heard she still had an ostomy bag.

You have an autoimmune disease. When you eat gluten it reacts as if it's poison. I think some may take offense as if I'm lecturing you, but I am sharing this because I don't want you to hurt yourself. I don't want you to end up like that lady in the hospital and on immunosuppressants who has very little quality of life right now.

If you have gluten intolerance or sensitivity I think the same rules apply. The tests are not that accurate. There are lot of false negatives. So I think you don't really know if you have celiac or not and now that you're gluten free you never will. But don't take the chance that it's "just" intolerance and cheat.

Take this as you will. If you get offended I'm sorry, but I don't want to read your posts from the hospital and I feel like I have to share that story that the doctor told me.

Makes me think about my visit to a very famous celiac specialist. He was pretty good, though I did not really learn anything from my visit since he, like other MD's had no idea how to help someone like me who was having difficulties despite what I thought was a gluten free diet. He had a nutritionist who worked with him. When she told me I could eat up to an eighth of a teaspoon a day of wheat and be safe, my eyes kind of glazed over and I stopped listening to her. My general practitioner who did my initial diagnosis as non-celiac gluten intolerant told me I could eat moderate amounts of gluten like a sandwich a day, but just to avoid things like large plates of spagetti. Well, here I am now still really struggling with sensitivity that has increased exponentially. I now have to avoid all processed food including gluten free products. I often wonder if this would have happened if I had been advised to be totally gluten free from the start.

sandsurfgirl Collaborator
sandsurfgirl
Posted
  • Author

Makes me think about my visit to a very famous celiac specialist. He was pretty good, though I did not really learn anything from my visit since he, like other MD's had no idea how to help someone like me who was having difficulties despite what I thought was a gluten free diet. He had a nutritionist who worked with him. When she told me I could eat up to an eighth of a teaspoon a day of wheat and be safe, my eyes kind of glazed over and I stopped listening to her. My general practitioner who did my initial diagnosis as non-celiac gluten intolerant told me I could eat moderate amounts of gluten like a sandwich a day, but just to avoid things like large plates of spagetti. Well, here I am now still really struggling with sensitivity that has increased exponentially. I now have to avoid all processed food including gluten free products. I often wonder if this would have happened if I had been advised to be totally gluten free from the start.

I wonder if that famous specialist is named after the color of grass. I won't even get started on him and his refusal to accept anything but endoscopy as valid diagnosis. And other things. Grr..

I am so sorry that happened to you. The beautiful thing is that now you can be totally gluten free and get healed. It is totally normal to be unable to eat complex processed foods when you are healing! We all go through that stage and most come out of it and are able to enjoy a nice Kinnikinnick donut eventually.

If you're really craving something sweet, try the Betty Crocker chocolate chip cookies. They have simple ingredients and are mostly rice flour based. Or you can make a flour blend of 2 parts white rice flour to 2 parts potato starch and sub it in a recipe. Just use a little more flour than the Tollhouse recipe calls for so they aren't so thin. They turn out really good.

Another go to cookie for me during healing time, if you can eat peanut butter is this recipe.

1 cup natural peanut butter

1 cup sugar

1 egg

1 tsp baking powder

Mix it all up, put little balls of it on a cookie sheet and press down with a fork. Bake about 10 minutes at 350. They are amazing!

Hang in there. It gets better!

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