Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Need Help Coping With This
0

3 posts in this topic

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 :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,337
    • Total Posts
      917,376
  • Topics

  • Posts

    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,468
    • Most Online
      1,763

    Newest Member
    RichieF
    Joined