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

I Am So Lost/confused


Lissa

Recommended Posts

Lissa Apprentice

I went gluten free on Tuesday.

I made the decision early Tuesday morning (around 3AM) when I was curled in the fetal position on my bathroom floor from eating pizza for dinner on Monday.

I never looked back, resisted all temptation for any gluteny food, stuck to the diet. I think I was doing better, (I hadn't had any D after tuesday), but I can't be sure. I'm at the point where I've been sick for so long that I can't tell anymore. Anyways, I was good until Saturday, when there was desserts. I gave in and I ate some. It was a girls night, and I don't know, I really wanted to test myself. See if I was really Celiac. So I had a nice helping of some cake and baclava. I didn't react! Is 4 days too soon to feel better? I'm so confused. I was almost positive I was having reactions to gluten...until I didn't. Am I a raging hypochrondiac? Or is it possible that I wasn't better at all, therefore, when I ate the gluten, it didn't make a difference?

really hoping you can give me some answers,

Lissa

PS - thank you for answering all my questions! I don't know where I would be without all you!


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



Celiac.com Sponsor (A8-M):



blueeyedmanda Community Regular

Some people do slip and no have a visible reaction, like D or stomach pains. Had you been told you had celiac prior to deciding to go gluten free on Tuesday? If you had blood tests or something, I would say do not touch gluten foods again, you are doing damage even if you do not know it by not having a reaction. If you are just trying the diet to see if will help you feel better, I would give it a little longer than 4 days to see how you are doing. Hope that helps.

confused Community Regular

Maybe you are not reacting to gluten but to casein. Are you an diagnosed celiac?

paula

BRUMI1968 Collaborator

I've spent much of my life in the fetal position, or crawling across the floor to the bathroom, so full of air and inflammation that i couldn't bear to stand - and then go sit uselessly on the toilet (was constipation, not D). At work I spent hours in the bathroom hoping no one would notice as I cried, hoping to get some relief. Ouch. What was the trigger 9/10 of the time? PIZZA. SPAGHETTI. These were the two biggest ones. As a child I ended up throwing up as much pizza as I kept down.

At first I thought it was cooked tomato sauce. that does bug me. then maybe garlic, which also bugs me. I only found out a bit over a year ago that I have Celiac Disease. It all made sense. Now I can eat small doses of tomato or garlic, but not too much (maybe even just from memory). I also can't do dairy; even the smallest amount gives me Constipation quite badly.

BUT...I didn't react every time I had pizza. In fact, I didn't make the connection for years and years.

If you have insurance, you might want to get the blood test for Celiac -- then you'll know you need to stick to gluten-free for your life, like someone else said, even if you have no symptoms ever again. If you don't have insurance - try going gluten free again, and see how you feel. OR, go casein free for a week but eat gluten - to see if it might be that. Some of the same symptoms occur.

I've blathered. My point: you might not react every time to gluten - sometimes it might be cumulative (like it is for me with chocolate -- good for a while, then bam). Take care.

rinne Apprentice

Hi Lissa and welcome. :)

For years I thought I was getting away with exactly what you are describing. I would cut out wheat for a while and feel better and then challenge myself with bread or pastry and do okay the first time and maybe even the second time but then I would be right back into all my symptoms of C and bloating.

I say I thought I was getting away with it because over a year ago my entire gastric tract went up in flames and I was unable to eat at all. I lost 40 pounds too quickly and was in great pain.

I have since given up, in addition to the gluten and it has been over a year now, dairy, nightshades, all grains, coffee..... the list goes on.

I have a sister and brother diagnosed with Celiac and another sister and brother who have gone gluten free because of problems. I suspect I have Celiac although I have not had a test that confirms it.

I also have Lyme, mercury and candida problems which contribute to my limited diet.

A diet can be a diagnostic tool, trust your body. :)

little d Enthusiast
I've spent much of my life in the fetal position, or crawling across the floor to the bathroom, so full of air and inflammation that i couldn't bear to stand - and then go sit uselessly on the toilet (was constipation, not D). At work I spent hours in the bathroom hoping no one would notice as I cried, hoping to get some relief. Ouch. What was the trigger 9/10 of the time? PIZZA. SPAGHETTI. These were the two biggest ones. As a child I ended up throwing up as much pizza as I kept down.

At first I thought it was cooked tomato sauce. that does bug me. then maybe garlic, which also bugs me. I only found out a bit over a year ago that I have Celiac Disease. It all made sense. Now I can eat small doses of tomato or garlic, but not too much (maybe even just from memory). I also can't do dairy; even the smallest amount gives me Constipation quite badly.

BUT...I didn't react every time I had pizza. In fact, I didn't make the connection for years and years.

If you have insurance, you might want to get the blood test for Celiac -- then you'll know you need to stick to gluten-free for your life, like someone else said, even if you have no symptoms ever again. If you don't have insurance - try going gluten free again, and see how you feel. OR, go casein free for a week but eat gluten - to see if it might be that. Some of the same symptoms occur.

I've blathered. My point: you might not react every time to gluten - sometimes it might be cumulative (like it is for me with chocolate -- good for a while, then bam). Take care.

I too react just like this but for me we were having a lot of spegetti for dinner, which had onions I cut those out for over a year an I would have such horrible gas pain I felt like I was having a baby, which I was not pregnate. then I don't know the next time we had spegetti no reaction at all and I made it the same way. down to the bread, but the only thing that I reacted to always consistantly was Life Cinnimon ceral my fav of all time not the reaction.

donna

Lissa Apprentice

Thanks for the replies everyone!

A couple of questions/answers:

1) I had the test and it came back negative.

2) What's casein?!

3) I always react to pizza as well!

Thanks for the help and everything, I'm sorry the post is so short, but I'm expected somewhere right away. THANKS!


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



Celiac.com Sponsor (A8-M):



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. - Aretaeus Cappadocia commented on Celiac.com Sponsored Post's article in Celiac.com Sponsors
      1

      Do You Know Your GlutenID?

    2. - knitty kitty replied to xxnonamexx's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Gluten Free Sugar or Starch known to increase gas?

    3. - xxnonamexx replied to xxnonamexx's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Gluten Free Sugar or Starch known to increase gas?

    4. - Aretaeus Cappadocia replied to Lotte18's topic in Publications & Publicity
      17

      Prospective CRISPR research

    5. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      21

      Disaccharide deficient, confusing biopsy results, no blood test

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

    • Total Members
      133,769
    • Most Online (within 30 mins)
      7,748

    Butterfly26
    Newest Member
    Butterfly26
    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

    • knitty kitty
      Even if you don't have Celiac Disease, you can still get SIBO.   Glad to hear you're taking the vitamins and magnesium!   Are you getting sufficient Omega Three oils like flaxseed, olive oil, or Sunflower seed oil?   I didn't like coconut oil because it upset my digestive tract.   How is your Vitamin D level?
    • xxnonamexx
      I was looking at SIBO but I don't think I fall into that category. Yes I eat meat. I don't think I'm celiac I think I am just gluten intolerant but I take multivitamin, Super B Complex, Benfo with Thiam, Thiamax, Neuromag that you suggested.
    • Aretaeus Cappadocia
      @Lotte18, thank you for providing this page from the research proposal. Some comments, if I may (apologies for what you already know): They start by saying that previous research has shown that it's possible to modify the HLA-DQA1 gene and have that new version expressed "in humans" (not sure if they mean intact humans or just cells in culture). This is a standard form of scientific communication where you explain what is already known as it relates to what you want to do next. The HLA-DQA1 gene encodes 1/2 of a series of "locks" from my earlier metaphor. Two of the types of locks that can be made by variants of this gene are called DQ2.5 and DQ8 (either of which will confer susceptibility to celiac). DQ2.5, DQ8, and other DQ's are referred to as "heterodimers" - "dimer" means made up of exactly 2 pieces and "hetero" means that the pieces are not identical to one another (identical parts would be homodimer). HLA-DQA1 genes each make a protein that becomes one of the two parts of a series of heterodimers. Different forms of HLA-DQA1 are called "variants" or "alleles".  Next they say that they propose to use the same technology in attempt to minimize/cure celiac. The idea is reasonable science and before considering all of the caveats it certainly has merit as something to consider. As a side note, I would challenge some of their language. DQ2.5 and not-2.5 are both "variants" or "alleles" - one is not "wildtype" nor the other "mutant". Their proposal is to "modify", not "correct" the gene. This might sound picky but I have a background in genetics and this is jarring to me. The last paragraph outlines more of the roadmap for their proposal using relatively mundane steps (apheresis) and relatively advanced steps (CAR-T). There is a logic to their approach but there are severe caveats. CAR-T is kind of a nuclear option. It has shown many miracle cures in certain kinds of cancer and it is being studied for some kinds of life-threatening autoimmune disease. It also has devastating side effects. If tomorrow someone offered me a fully validated CAR-T procedure for celiac along the lines of this proposal, based on my understanding of the risks I would turn them down. Separately, I would also have concerns about the "off target" risk of the CRISPR part of the procedure. In addition to funding issues, there may be significant ethical issues that would challenge their proposal. Human clinical trial proposals go through extensive review before they are approved and one of the significant considerations is whether the risks to the patient are warranted (relative to the benefit). If a procedure has really horrible side effects but it is the only available option for a dying patient, the review board is likely to approve. However, if there is a much less harmful treatment option that delivers enough of a benefit, then there is a higher chance that the trial would not be approved. For celiacs, the availability and relative effectiveness of gluten-free diet will raise the bar for trying risky therapies in the clinic. Science and medicine constantly progress, so it's entirely possible that someday there will be a safe and effective genetic "cure" for celiac. However not anytime soon and I believe it would only come after these CAR-T procedures have become routine in the treatment of a long list of other diseases. In a world of unlimited funding for scientific research I would definitely fund this proposal. In the world of tight competition for research funding that we live in I would need to know a lot more about their proposal and the greater context of how it fits in with other research before I would give them money at this time (not that anyone is asking me).
    • jenniber
      thank you for that info too!! will keep this in mind if he ends up in the ER again! 
    • knitty kitty
      @Heavenly Flower and @lehum, How are you doing?   My favorite book is The Paleo Approach by Dr. Sarah Ballantyne, a Celiac herself.   This book explains the AutoImmune Protocol Diet (AIP diet) which is the diet I follow.  Yes, it is very strict, just meat, veggies and some fruit.  But it really works.  You cut back to just meat and veggies to let your digestive system calms and starts healing.  Then you add back foods slowly looking for intolerance symptoms.  Supplementing with B Complex vitamins, Vitamin D and minerals like Magnesium ensures you're receiving sufficient nutrients needed to heal.  Correcting any vitamin deficits is important in Celiac disease.   Hope you're doing well!  
×
×
  • 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.