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. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      3

      New issue

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      My journey is it gluten or fiber?

    3. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

    4. - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

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

    • Total Members
      133,101
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      Nope its just me because they can eat wheat and when we use same pans I found out last year thanks to you guys and the autoimmune website im learning,we are not to share though clean, same with sponge. I just wish doctors understood. I am with new gi and new pcp but im falling apart because blood work is fabulous.Im so ANGERY.I have reached out to my local representative, in Stanislaus but its just weekly stuff.Im going to need to physical go down there.Any recommendations on what to say and do because this is absolutely ridiculous. If I didn't have my husband though we are really hurting with one income, I would absolutely be one of the homeless population. Thats alarming begging to be heard about a diagnosis that was given as an adult and dealing with this, medical needs to stick to patients regardless of switching insurance or doctor. 
    • knitty kitty
      If you haven't noticed a difference yet, bump up your Thiamax.  Add in another Thiamax with breakfast and lunch.  Increase the NeuroMag as well.  You can add in another Benfotiamine, too.   Thiamine is safe and nontoxic even in high doses.  Taking more is fine. I had to bump mine up several times when first starting.  It's a matter of finding what works for you.  Everyone is different.   Stick with it.  Some of the health improvements are very subtle and gradual.   Keep going!  You're doing great!
    • knitty kitty
      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance nor a dairy allergy.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  When the villi grow back, the villi can resume making lactase again.  I react to casein. Keep in mind that part of the autoimmune response to gluten and casein is the release of histamine.  Histamine causes inflammation, but it is also powerful excitory neurotransmitter, causing heightened mental alertness.  Histamine release is what causes us to wake up in the morning.  Unfortunately, excessive histamine can cause insomnia.  Our bodies can make histamine, but foods we eat contain different amounts of histamine, too.  Our bodies can clear a certain amount of histamine, but if overwhelmed, chronic high histamine levels can keep inflammation going and cause other health problems.   I got very weary of playing Sherlock Holmes trying to deduce what I was reacting to this week, so I adopted the low histamine version of the Autoimmune Protocol diet, a Paleo diet designed by a doctor with Celiac, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, has been most helpful.   The low histamine AIP diet cuts out lots of foods that are known to be irritating to the digestive tract.  After a few weeks, when my system was calmer and healing, I could try adding other foods to my diet.  It was much easier starting with safe foods, adding one thing at a time, and checking for reactions than trying to figure out what I was reacting to with so many variables.  I learned to recognize when I had consumed too much histamine from different combinations of foods.  Everyone is different and can tolerate different amounts of histamine in their food.  B Vitamins help us make enzymes that break down histamine.  Vitamin D helps regulate and calm the immune system.  Supplementing with Thiamine helps prevent mast cells from releasing histamine.  Keeping a food-mood-poo'd journal helps identify problematic foods.   I hope you will consider trying the AIP diet.
    • trents
      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    • hjayne19
      Hi @knitty kitty  Just revisiting this to get some help. I found after understanding the extent of my anxiety, my sleep got a little better. Flash forward to a few weeks later I have had a few bad sleeps in a row and I feel desperate for a good nights sleep. I understand worrying about it won’t help but one thing I had tied things too was dairy. Initially when I went gluten free I felt great for the first few weeks then started having some stomach pain. So thought maybe I was lactose intolerant. I started eating lactose free Greek yogurt and that did help take the cramping away I guess. Over the last few months I haven’t eaten it every single day and I went a few weeks without it. The last few nights I did have a small amount with breakfast and noticed that was the only new thing I’ve really added to my diet. I had seen a few other posts about this. Is it possible to still react to lactose free? Would this potentially be a dairy allergy? Or something else. 
×
×
  • 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.