Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Downhill Spiral


JennFog

Recommended Posts

JennFog Rookie

Ok let me start by saying this will be a vent session!!! But please help...

Diag'd w/ Celiac Feb 06, accepted this in August 06 and thus my totally gluten free diet began. My vitamin levels are getting better, great right... BUT NOW my immune system is all over the place, I am breaking out in hives, my face swells and there is a choking cough which leaves me to gasping for air, so in a mad dash I grab my inhalor. After this 30 - 40 minute attack, I am physically exhausted, I have even passed out on the kitchen floor.

So my doctor thinks I have allergies to other grains. "YOU HAVE GOT TO BE KIDDING ME". He wants to take away corn, rice and potato. Now what is a girl to do. I love my meats fruits and vegetables, but come on, I needs some junk food every now & then or a baked potato, I just found these rice thai noodles "my saving grace away from pasta".

If he even mentions the words "no dairy" we are gonna fight.

Tomorrow I go for an allergy test to find out more. But I have a bad feeling my doctor is right. This weekend I cut out the above items and I felt much better, my allergy symptoms really lifted. I still hope maybe it is just one, like the potato - I could live without that. But corn and rice that will be hard.

Now I hear about these people on the paleo diet, so I read a little about it... No salt, no sugar, no beans, no soy, no wheat, no corn, no potato, no rice... this list goes on. Anyone following this diet??? & How???

Is anyone else, allergic to all grains??? How do you deal with it???


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



marciab Enthusiast

I am not allergic to all grains, but I had to answer anyway. It is entirely possible that you will be able to re-introduce rice, potatoes, etc at a later date and just need to take emergency precautions at this time.

I was down to about 5 foods when I started this, but now there are plenty of foods I can eat.

BTW, your taste buds will change once you have been away from those grains and you won't even be interested anymore. :)

Marcia

chrissy Collaborator

i'm thinking the same thing as marcia----you may eventually be able to add some of these things back.

CarlaB Enthusiast

Right now I eat only meat, chicken, fish, eggs, veggies, and a little potatoes and rice. I can have no more than one piece of fruit per day. I have no sugar, caffeine, alcohol, dairy, gluten, corn, or soy. I eat 5 small meals per day.

I am seeing an MD who also practices alternative care and she said I was just so run down from stress and constant inflammation that I need more than just a gluten-free diet to start feeling better. Eventually I'll let myself have treats, but probably only once or twice a week ... I don't want to feel bad again ... I'm only now starting to feel better and have a long way to go.

So, though I'm not on the diet you mentioned, mine is as resticted ... how do I deal with it? I eat at home, I prepare all my own meals, I'll eat before we go somewhere and bring food with me. I spend so much time eating, shopping for my food, etc. that I don't really have time to think about all the foods I'm missing out on. Plus, the stuff I'm treating myself to is so tasty, how can I complain? I'm just doing what I have to do to get better.

I'm glad you're starting to feel better. You're not alone, there are others of us who have had to make things more simple in the beginning.

jerseyangel Proficient

Hi--A lot depends on whether you are truly *allergic* to these foods, or intolerant.

The first step is to see the allergist and have the allergy testing--that's what I did and I was not allergic to any of the foods he tested for. Your reactions sound like they could be from a true allergy, so I'm glad you're getting tested for those.

If you are negative, but find the foods still bother you, you are probably intolerant. You'll need to avoid the offending foods for at least 6 months or even longer. At that point, you could (if you want) try the food again and see how it goes. It's possible for a food *intolerance* to go away with time, as as your intestine heals.

Through an elimination diet (as suggested by my allergist), I found that I'm intolerant to dairy, all legumes (soy, peanuts, beans, peas, green/wax beans, etc.), corn, and coconut--pretty much all forms of plant protein. My diet consists of meats, veggies, fresh fruits, potatoes, olive oil, almonds, spring water and a small amount of dark chocolate.

kabowman Explorer

It does get better. I avoid most of that and they are right, your taste buds change and you don't miss those foods the longer you avoid them. I occasionally treat myself like Carla and wow, do I really enjoy that but most of the time, I am fine.

I eat out occasionally but at very select places that are used to dealing with me. Most of the time, 99.5%, I cook and eat at home.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. 0

      Celiac Friendly Sports Camps - Academy Camps - Virtual Open House

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

    5. - Scott Adams replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,210
    • Most Online (within 30 mins)
      7,748

    ngeragosian
    Newest Member
    ngeragosian
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.