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. - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Is this celiac?

    2. - knitty kitty replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

    3. - knitty kitty replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      ttg iga high (646 mg/dl) other results are normal

    4. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

    5. - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      36

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,345
    • Most Online (within 30 mins)
      7,748

    rolland mcclay
    Newest Member
    rolland mcclay
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Hmart
      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
      @Trish G,  I like dates, they have lots if fiber as well.  But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small intestines where our nutrients are absorbed.  If you have constipation, where your body is rather pushing your food away and not interacting with it, the nutrients in the food are not being released and absorbed.  You can develop deficiencies in all the vitamins and minerals necessary for the body to function properly.   The B vitamins cannot be stored for long, so they must be replenished daily.  Thiamine B 1 stores can run out in as little as three days.  Constipation (or diarrhea or alternating) is one of the first symptoms of thiamine deficiency.  Thiamine needs magnesium, Pyridoxine B 6, and Riboflavin B 2 to make the intestinal tract function.  Thiamine and Niacin make digestive enzymes.  Thiamine provides the energy for nerve impulses to carry messages to the brain and back about digestion.  Thiamine provides the energy for the muscle contractions which move your food through the digestive tract. High calorie meals containing lots of starches and sugars can deplete thiamine stores quickly because more thiamine is required to turn them into energy.   Are you taking any vitamin and mineral supplements?  Correction of malnutrition is very important in Celiac disease.  Thiamine, the other B vitamins and magnesium will help with constipation better than adding more fiber.  What did your nutritionist recommend you take, besides just the fiber? The association between dietary vitamin B1 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11100033/ Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Association between dietary vitamin B6 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11584952/
    • knitty kitty
      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines.  Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured in blood tests. If you had already gone gluten free or if you had lowered your consumption of gluten before testing, your results will be inaccurate and inconclusive.   See link below on gluten challenge guidelines. Have you had any genetic testing done to see if you carry genes for Celiac disease?  If you don't have genes for Celiac, look elsewhere for a diagnosis.  But if you have Celiac genes, you cannot rule out Celiac disease. You mentioned in another post that you are vegetarian.  Have you been checked for nutritional deficiencies?  The best sources of the eight essential B vitamins are found in meats.  Do you supplement any of the B vitamins as a vegetarian? Deficiency in Thiamine Vitamin B 1 is strongly associated with anemia which can cause false negatives on antibody tests.  Fatigue, numbness or tingling in extremities, difficulty with coordination, headaches and anemia are strongly associated with thiamine deficiency.  Other B vitamins that contribute to those symptoms are Riboflavin B 2, Pyridoxine B 6, Folate B 9 and B12 Cobalamine.  The eight B vitamins all work together with minerals like magnesium and iron.  So your symptoms are indicative of B vitamin deficiencies.  You can develop vitamin and mineral deficiencies just being a vegetarian and not eating good sources of B vitamins like meat.  B vitamin deficiencies are found in Celiac due to the malabsorption of nutrients because the lining of the intestines gets damaged by the antibodies produced in response to gluten.    
    • Trish G
      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement.  Thanks again
    • Wheatwacked
      If you were wondering why milk protein bothers you with Celiac Disease.  Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
×
×
  • 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.