Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Am I Insane?


jnclelland

Recommended Posts

jnclelland Contributor

I dunno whether I want you guys to talk me into this or out of it, but here goes:

I don't have any official diagnosis of anything. I've been wheat- and casein-free since my acupuncturist suggested it over a year ago, and completely gluten-free since October. I've just recently realized that soy is problematic as well, and I've been gradually finding all the places it hides and cutting them out. Since starting all this last summer, I've had huge improvements in eczema, anxiety, and a zillion little things, and I've never felt better in my life. I'm still in a state of denial/grieving about the soy (WAH - I miss Chinese food! I can find gluten-free soy sauce, but not soy-free soy sauce! :( ), but overall I'd rather be healthy.

I never had any GI-type symptoms until very recently, but the past few months I've had several episodes of sudden D that I'm sure were brought on by cross-contamination of some sort. They pass fairly quickly; usually it's just one rush-to-the-bathroom, or sometimes a few within an hour or so. But then I'm fine, except for feeling a bit dehyrated.

The thing is, I feel this need to know WHY. Is it gluten, or dairy, or something else? So I'm toying with the idea of trying some mini-challenges - a few bites of pasta, a few sips of milk, etc. - just to see which substances cause which reactions. Would this be totally insane???? I did try some plain yogurt a few months back, and it made my eczema break out, but this was before I started having problems with D. I haven't knowingly consumed any wheat in over a year, and the thought of it kind of freaks me out. But then, for all I know, my entire problem could be dairy, KWIM?

I guess what I'm really wondering is whether doing a mini-challenge could cause any long-term damage. If not, I suspect that curiosity will get the better of me eventually.

Jeanne


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Hi Jeanne

I don't blame you for being curious. I know that Ursula did some challenges on herself a while back and posted the results.

Good luck with whatever you do--let us know :)

queenofhearts Explorer

About the gluten challenge, I sympathize with the spirit of scientific inquiry, but it sounds kind of scary to me.

Then again I've been diagnosed by biopsy so I feel like I already know the answer.

About the soy sauce, have you tried fish sauce? No, it doesn't taste the same, but you can sub it in recipes for a hit of Asian saltiness... if you haven't tried it, don't be put off by smelling the bottle-- if you just use a splash it isn't overpowering at all. Do check & make sure the brand you buy is gluten-free because some do contain wheat.

Leah

marciab Enthusiast

I had to retry wheat 3 times before I could give it up. So, I understand completely. Now, I can honestly say I am not interested in trying wheat ever again. Each time the reactions took me at least a week to get over.

I am still trying to convince myself that I should give up eggs. They kill me, but I keep trying them about once a month. The reaction time is only 2 days and only gas so they are much harder to give up.

So, I would say go ahead and enjoy whatever you decide to test with. Garlic bread, cake .. yum !! :D

jnclelland Contributor

I guess I'm just feeling frustrated because I had one of these D incidents yesterday, and I'd at least like to be able to tell people - like my doctor, for instance! - "This is what happens when I accidentally ingest X." But I don't really know whether X is gluten, dairy, or something else.

Don't get me wrong - I am NOT trying to see if I can eat gluten or dairy again. I'm happier and healthier without them. I'd just like to know what's responsible for these GI symptoms that I've never had before.

About the soy sauce, have you tried fish sauce? No, it doesn't taste the same, but you can sub it in recipes for a hit of Asian saltiness... if you haven't tried it, don't be put off by smelling the bottle-- if you just use a splash it isn't overpowering at all. Do check & make sure the brand you buy is gluten-free because some do contain wheat.

I didn't know they made gluten-free ones; do you know where to find them? (Of course, what's really a bummer is not being able to do take-out...)

Jeanne

lorka150 Collaborator

Thai Kitchen fish sauce.

mle-ii Explorer
I guess I'm just feeling frustrated because I had one of these D incidents yesterday, and I'd at least like to be able to tell people - like my doctor, for instance! - "This is what happens when I accidentally ingest X." But I don't really know whether X is gluten, dairy, or something else.

Don't get me wrong - I am NOT trying to see if I can eat gluten or dairy again. I'm happier and healthier without them. I'd just like to know what's responsible for these GI symptoms that I've never had before.

I didn't know they made gluten-free ones; do you know where to find them? (Of course, what's really a bummer is not being able to do take-out...)

Jeanne

Same here. I've thought about trying some glutened food to see what symptoms I get and to see if they match up with what I think the symptoms are for me when I think I accidently ingest it. Haven't had the guts (ha ha) to do it yet. :)


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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - lizzie42 posted a topic in Coping with Celiac Disease
      0

      Is tTG 9 normal after 4 months gluten-free?

    2. - knitty kitty replied to thejayland10's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      TTG IgA and IGA elevated mildy

    3. - trents replied to boy-wonder's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      New to gluten free living, in5ro and small question

    4. - AllyJR posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Gluten free parakeet food

    5. - boy-wonder posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      New to gluten free living, in5ro and small question


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,198
    • Most Online (within 30 mins)
      7,748

    David Pearch
    Newest Member
    David Pearch
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • lizzie42
      My daughter has been gluten-free about 4 months. Prior, her tTG was over 100 (test maxed at 100). Her liver, iron, vit d are all normal again and she has grown 2 inches and gained 4.5 pounds in just 4 months! It's amazing. But her tTG is still at 9. Is that normal or should it be zero? Is she still getting gluten? We are SO strict. We don't eat out.  She was previously having tummy pain still. I cut oats completely 3 weeks ago and that is gone.  Can gluten-free oats raise tTG? Would I know based on symptoms? I was going to try her on oats again now that she doesn't say her tummy hurts anymore.  Also, our house is gluten free apart from one loaf of bread my husband uses. He makes sandwiches on a plate then puts it in the dishwasher. Yesterday when my celiac kids weren't home, my youngest and I ate "real" pasta. I was SO careful. All pans went in the dishwasher, I didn't spill any, I cleaned the sink I drained it in. Today my girl has her dermatitis herpetiformis rash back and had a huge hour long meltdown then fell asleep. Just like before diagnosis. Is it that hard to avoid cross contamination? Will one crumb off the plate or me cooking pasta when she's not home get her?  Again, we do not eat out, she's not in school yet, and she doesn't eat anything I don't give her. 
    • knitty kitty
      Hi, @thejayland10, Do you still consume dairy?  Dairy can cause increased tTg IgA levels in some people with celiac disease who react to casein, the protein in dairy, just like to gluten.   You might try cutting out the processed gluten free foods.  Try a whole foods, no carbohydrate Paleo diet instead, like the AIP diet (the Autoimmune Protocol Diet by Dr. Sarah Ballantyne, a Celiac herself). Processed gluten free foods can be full of excess carbohydrates which can alter your microbiome leading to Small Intestinal Bacterial Overgrowth (SIBO).  SIBO is found in some people who are not responding to a gluten free diet.  SIBO can elevate tTg IgA levels.  The AIP diet cuts out sources of carbohydrates like rice, potatoes (nightshades), quinoa, peas, lentils, legumes, which starves out the SIBO bacteria.  Better bacteria can then proliferate.   I followed the AIP diet to get rid of my SIBO.  It's a strict diet, but my digestive tract had time to rest and heal.  I started feeling better within a few days.  Feeling improvement so soon made sticking to the AIP diet much easier. References: Small intestinal bacterial overgrowth among patients with celiac disease unresponsive to a gluten free diet https://pmc.ncbi.nlm.nih.gov/articles/PMC7759221/   Luminal antigliadin antibodies in small intestinal bacterial overgrowth https://pubmed.ncbi.nlm.nih.gov/9260801/#:~:text=Luminal total IgA concentrations (p,response to local bacterial antigens.   Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease https://pubmed.ncbi.nlm.nih.gov/12479649/
    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
×
×
  • Create New...