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

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
      103,637
    • Total Posts
      918,422
  • Topics

  • Posts

    • Anxiously waiting
      Hi all. Ive just had my blood test results which showed a high level for coeliacs,originally i went to doctor coz my bowel movements had changed and haven't been normal for over a month and i am very tired,the tiredness i assumed was low iron and my tummy/bowel issues well i thought IBS Maybe or a bug as ive not really had issues before,anyway she has put me on a wait list to have a endoscopy done. Im so so confused as i didn't expect i may be coeliac,my symptoms come and go so on a day im good i think sweet my issues are resolved but then they come back so they are not consistent which makes me wonder if it is coeliac or not,but my tiredness,headaches,shortness of breath,tummy gurgling,different bowel movements,feeling nauseous are all symptoms that come at different times. The test i had was for gliadin IgG which was 20 but should be 7 or lower, i guess im just anxious to wait who knows how long for the endoscopy coz i would like to try and cut out gluten but the dr said not to till the procedure is done. P.s im in australia so not sure if things are different here.
    • Celiac Night Vision
      Scotomas returned for the 7th year on the 24th February despite liver pâté and have varied since with 3 brief gaps. I have always had migraine, latterly occurring more than once a month, usually of basilar or retinal type with aura (but no headache) lasting less than 5 minutes. A recent bout looked like a TIA and led to a CT scan which revealed clear major vessels but old cerebellar infarcts, so maybe migraine accounts for poor memory too. The scotomas are very different from migraine eye symptoms - stationary, irregular in shape and lasting hours. I think food is excluded as the cause but seasonality, gaps, variation with wind direction and rain mean that pollen is still a possibility. Scott Adams did a marvellous thing founding this site so celiacs could enlighten each other. Please post if you have anything like these scotomas!
    • healthy bread recipe?
      Eat what you eat at lunch or dinner.  I am happy with a fried hamburger patty, fish, or chicken (I know it needs to be fresh or frozen for the histamine diet).  Yes, I eat veggies for breakfast!   Wanted to add that I was glutened in July (GI ordered follow-up antibodies testing and it was high)  and it took me 3 months to recover.  Picked up a histamine intolerance and became lactose intolerant again.  Luckily, when I healed, the histamine thing went away (or  Diminished ) and the lactose intolerance resolved.    I was getting hives, rashes and itching (not DH), vomiting, etc.  So, her intolerances may be just temorary!  
    • Could this be celiac or is it really just IBS?
      Are you sure you had the complete celiac panel?  Here are the tests:   -Tissue Transglutaminase (tTG) IgA and (tTG) IgG -Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG -EMA IgA  -total serum IgA and IgG (control test)     -endoscopic biopsy - make sure at least 6 samples are taken   VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.     (Source: NVSMOM -- 😊)   Here is more information from a reputable site (and not just info from a crazy cyclist on the Internet!):   http://www.cureceliacdisease.org/screening/   IBS, in my opinion, means "I Be Stumped!"  It is just a cop out!  So is the "stressed" thing.     I also had my GB out too.   It was a non-functioning (0% per HIDA scan), no stones, and rotting.     You seem to have many celiac disease symptoms.  Verify (obtain copies of your lab tests) to see if you got the complete panel. You might just have had the TTG IGA and TTG IGG tests.  Good for screening but it does not catch all celiacs.  My TTG tests are always negative even on follow-up testing.  The DGP test catches a positive for me.  My biopsies revealed moderate to severe damage.  If my celiac-savvy GI did not order the complete panel, my celiac disease diagnosis would never have been caught.   if celiac disease is really ruled out, research mast cell disorders.  The flushing and GI upset sound familiar!  You can have more than one thing going on!  But I would put my money on celiac disease!            
    • tightness in throat after eating gluten?
      I've noticed that if I accidentally eat gluten, for the next few days I have this tightness in my throat. It feels like my throat is closing. It's not constant, but comes and goes throughout the next 1-3 days. My hands have also been itchy. Is this a normal symptom for celiac or gluten intolerance, or could it possibly be an allergy? I haven't been tested or diagnosed with celiac or anything yet, so I'm still not entirely sure. All I know is that gluten makes me very sick.. But especially with the itchiness and tight throat.. I'm allergic to acetaminophen and my reaction is similar, so it just makes me wonder. What do you think?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,727
    • Most Online
      1,763

    Newest Member
    Kal
    Joined