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Need Help Coping With This


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#1 durrsakja

 
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Posted 23 April 2013 - 03:33 PM

A little bit about my celiac story. I have been healthy all my life until a few months ago when I suddenly started developing chest pain and numbness, and within a few months escalating to some stomach upsetness and heartburn, muscle cramping, pain, burning etc. (all fun stuff). This started happening when I was away on my honeymoon and deteriorated when I returned home. I had quite a few ER trips, saw multiple doctors and endured several painful tests (including a spinal tap that still hurts months later). Initially I was told it is stress and that I need to enjoy my life but I knew myself better and kept pushing for an answer until someone thought about running a celiac panel. The antibody levels were above 100 and the endoscopy confirmed the results.

I immediately went off gluten and (knock on wood) the numbers are coming down however I still am experiencing intestinal issues, have developed food allergies to a lot of foods that I never had an issue with in my life. Now I have to carry an epi pen around and the list of foods I can't eat keeps growing.

At this point I am not sure what I am doing wrong. I am eating minimal, if any, grains as I started developing a rice allergy (try being gluten free with no rice!). Dairy I am now allergic to so that is out. I have taken out soy on my own, can no longer do nuts and some other random foods. I am trying to rotate my diet but it is tough when what u can have is a small number of things and when you are constantly working.

I am hoping someone can give me any ideas on what worked best for them or if someone has a similar story and if they were able to heal and then reintroduce foods they had actual IgE allergies too. I am at a loss of how there could be so much damage so quickly with no family history of autoimmune disorders (knock on wood again). Thanks for letting me vent and hope to hear some success stories :)
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#2 cyclinglady

 
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Posted 23 April 2013 - 03:56 PM

A little bit about my celiac story. I have been healthy all my life until a few months ago when I suddenly started developing chest pain and numbness, and within a few months escalating to some stomach upsetness and heartburn, muscle cramping, pain, burning etc. (all fun stuff). This started happening when I was away on my honeymoon and deteriorated when I returned home. I had quite a few ER trips, saw multiple doctors and endured several painful tests (including a spinal tap that still hurts months later). Initially I was told it is stress and that I need to enjoy my life but I knew myself better and kept pushing for an answer until someone thought about running a celiac panel. The antibody levels were above 100 and the endoscopy confirmed the results.

I immediately went off gluten and (knock on wood) the numbers are coming down however I still am experiencing intestinal issues, have developed food allergies to a lot of foods that I never had an issue with in my life. Now I have to carry an epi pen around and the list of foods I can't eat keeps growing.

At this point I am not sure what I am doing wrong. I am eating minimal, if any, grains as I started developing a rice allergy (try being gluten free with no rice!). Dairy I am now allergic to so that is out. I have taken out soy on my own, can no longer do nuts and some other random foods. I am trying to rotate my diet but it is tough when what u can have is a small number of things and when you are constantly working.

I am hoping someone can give me any ideas on what worked best for them or if someone has a similar story and if they were able to heal and then reintroduce foods they had actual IgE allergies too. I am at a loss of how there could be so much damage so quickly with no family history of autoimmune disorders (knock on wood again). Thanks for letting me vent and hope to hear some success stories :)

I was just recently diagnosed with Celiac Disease.  Fortunately, my husband has been gluten-free for over 12 years so adapting has been relatively easy.  I also have allergies to nuts, eggs, milk, garlic and mushrooms.  I've had these allergies for over 15 years, but like a fire, they have diminished or calmed down. Back then,  I spent about 6 months on a four day rotational diet once I identified my five main food allergies (MD -- blood and scratch tests).  Other foods and items like tree pollen and mold were impossible to avoid or eliminate, so I'd eat those less offending foods on the rotation diet.  I was working full-time and had a demanding job so it is possible to handle a food rotation program.  Stick to simple foods.  Cook on the weekends.  Divide all the foods you can eat into four or seven days.  There are so many vegetables and fruit to choose from!  Alternate grains (gluten-free) are great too.  I'd cook those in a tiny crock pot  during the night for my morning breakfast.  I'd always start my rotation in the evening.  For example, if it was "Day 3".  I'd cook fish for dinner and have enough for breakfast and lunch (pack it up and take it with you).  Cook a turkey and freeze small portions.  I think you get the idea.  I'm sure you can research a rotational plan.  I was famous at work for nuking a sweet potato or squash.  But the end results were worth it.  Now and then I can have those foods as long as it's not Spring/Summer.  I am able to eat eggs and some dairy in baked goods.  Good luck!


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#3 nvsmom

 
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Posted 23 April 2013 - 07:20 PM

I'm sorry to hear you've had such a rough go.  :(

 

There are a fair number of people around here who "lost" many foods to sensitivities and allergies, but many of the eventually got those foods back. Hopefully they'll have some advice and success stories for you.

 

Best wishes.


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