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

The Food I Miss The Most


dbmamaz

Recommended Posts

dbmamaz Explorer

Hot peppers!!

I took the A.L.C.A.T test and reacted to over a third of the foods they tested me for. I have chosen NOT to do the yeast diet at this point, because the other foods are stressing me out too much already, so I'm still eating sugar. But all in all, the hardest things to give up are the spices! The roast chicken and lamb just arent as good without the thyme and rosemary! The soups are not the same without onions.

But tonight was taco night . . . . I make our own taco seasoning, and I have to take my meat out before I add the chili powder, onion powder, cumin and cayenne ... so, my meat is kinda tasteless . .. i added black pepper, but it isnt the same. Plus I cant have salsa either.

Avoiding a few fruits and veggies, limiting myself to only a few meats, having 3 grains to eat, these things I can work with. Yeast, egg whites, peanuts and almonds, rice and fish sauce, I'm adjusting. But taking away my spices?! I'm dying here!!! Food is tasteless!!

I keep telling myself its only another month, and then I can start adding things back in . .. and i tell you, the first thing will be chili peppers, cayenne and jalepenos, and next will be onion, and next will be thyme and rosemary and basil.


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

You know, I kind of had this discussion last night, or a similiar one. I said I have to stop resenting celiac disease, it's going to be with me for the rest of my life! I have been gluten free now for over 7 1/2 yrs. In the beginning, it was wonderful, I had my life back! I didn't have to worry about having a stomachache every night, the diarrhea was gone for the most part--I didn't mind giving up my sandwiches and I could still have my noodles in the form of Tinkiyada.

Fast forward to now and add all the other intolerance's that I have now and you r food sounds nice to me. I use salt and pepper, haven't used any other spice in so long I can't remember. I can't tell you the last time I had a piece of red meat. I only can eat chicken breast, and some fish now. I have to be very careful with my veggies, just green beans, peas, occasionally carrots--oranges, apples, pears, a few grapes, maybe occasionally a banana. I never had to give up my dairy and I have always been very grateful for that. I eat no grains except for my 2 caramel corn ricecakes every morning for breakfast with peanut butter. We are not sure why that little bit of rice doesn't bother me, but we are not arguing the fact. For some reason, I can eat potatoe chips too and we don't understand why, but we aren't arguing that fact either.

No other grains, soy, corn, and rice constipate me, plus make my tummy break out in an ugly rash, oats have always been just as bad as gluten for me, no red meats, no nightshades (tomatoes make me sick in 20 minutes and I do so love them, mushrooms are just as bad and a favorite), no cruiferous veggies---------plus non of the grains can touch my skin without hives.

As diseases go, celiac may be the disease of choice, so to speak--a diet change can be the only thing you need do to feel better. It can be much more forgiving than other diseases, yet for some of us, it's not so easy. I do not wish celiac on anyone, and I certainly do not wish I had something else, yet I never, ever say it's an easy disease to deal with--it's not. There are so many levels of this disease, so many unknowns to it still. I learn more everyday in the forums I read in.

What we need to remember is: celiac disease can be fatal. We need to be thankful we found out what is wrong and that we are dealing with it and have our life back. Taking away a some spices is nothing compared to living a healthy life, is it? Check out some Mrs. Dash, some are gluten free and maybe you can try for additional flavor.

dbmamaz Explorer

Ok, it just got worse. All the foods I mentioned before were ones I CANT have (aside from the chicken and lamb). However, those were all 'sensitivities' from the A.L.C.A.T test . . .

Today I went to the allergist and had scratch-tests plus interdermal (little shots). When the doctor looked at the results, he said, "well, you're allergic to your world". I reacted to pretty much every tree, weed, animal and mold he tested me for. When he looked at the foods, he said that for the elimination diet, he would only take me off things I reacted a 2 or higher, because "Otherwise, you'd pretty much be eating grapes and water." Ok, slight exaggeration, because I didnt react to cantaloupe, orange, peach, white grape, onion, green bean, peanut or celery. He ordered blood tests for lamb and turkey, since I reacted to ever meat and fish he could test me for.

I told him that I would do his elimination diet after I finished the one I'm already on . ..

This is NUTS! I'm not even that sick! Although I felt pretty lousy after the testing, thats for sure.

WHY am I both allergic and sensitive to everything? Or even more important, why am I not as sick as my sister who has fibromyalgia and chronic fatigue, and has been hospitalized for suicidal tendancies several times . . .

Sorry, just venting . .. I dont think there's anything else to do, is there?

Yenni Enthusiast
You know, I kind of had this discussion last night, or a similiar one. I said I have to stop resenting celiac disease, it's going to be with me for the rest of my life! I have been gluten free now for over 7 1/2 yrs. In the beginning, it was wonderful, I had my life back! I didn't have to worry about having a stomachache every night, the diarrhea was gone for the most part--I didn't mind giving up my sandwiches and I could still have my noodles in the form of Tinkiyada.

Fast forward to now and add all the other intolerance's that I have now and you r food sounds nice to me. I use salt and pepper, haven't used any other spice in so long I can't remember. I can't tell you the last time I had a piece of red meat. I only can eat chicken breast, and some fish now. I have to be very careful with my veggies, just green beans, peas, occasionally carrots--oranges, apples, pears, a few grapes, maybe occasionally a banana. I never had to give up my dairy and I have always been very grateful for that. I eat no grains except for my 2 caramel corn ricecakes every morning for breakfast with peanut butter. We are not sure why that little bit of rice doesn't bother me, but we are not arguing the fact. For some reason, I can eat potatoe chips too and we don't understand why, but we aren't arguing that fact either.

No other grains, soy, corn, and rice constipate me, plus make my tummy break out in an ugly rash, oats have always been just as bad as gluten for me, no red meats, no nightshades (tomatoes make me sick in 20 minutes and I do so love them, mushrooms are just as bad and a favorite), no cruiferous veggies---------plus non of the grains can touch my skin without hives.

As diseases go, celiac may be the disease of choice, so to speak--a diet change can be the only thing you need do to feel better. It can be much more forgiving than other diseases, yet for some of us, it's not so easy. I do not wish celiac on anyone, and I certainly do not wish I had something else, yet I never, ever say it's an easy disease to deal with--it's not. There are so many levels of this disease, so many unknowns to it still. I learn more everyday in the forums I read in.

What we need to remember is: celiac disease can be fatal. We need to be thankful we found out what is wrong and that we are dealing with it and have our life back. Taking away a some spices is nothing compared to living a healthy life, is it? Check out some Mrs. Dash, some are gluten free and maybe you can try for additional flavor.

Deb, I seem to have many of the same issues as you. Very limited on food. I don't get the rash, but so many things besides gluten make me sick.

What I miss the most... I wish I could eat cheese actually. I wasn't a big fan of cheese, but I miss it now. I wish I had less fruit allergies too, so that I could eat all of them.

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. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    2. - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    3. - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

    4. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    5. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

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

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.