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

gluten-free But Undiagnosed...help!


runnergirl42

Recommended Posts

runnergirl42 Newbie

My sister was diagnosed with celiac 2.5 years ago. I largely cut gluten out of my diet as well. Our house is almost completely gluten-free. When I lived away from home during college, I would eat minimal amounts of gluten (a couple pieces of toast in the morning sometimes, but typically my diet consisted of whole foods without gluten). This past fall I noticed that I was getting diarrhea/stomach aches in the mornings (after eating toast!). Then I went away for a weekend and was served lots of food with gluten in it (and remember I didn't typically eat much gluten). I didn't notice a reaction right away, but a day or two later I was experiencing lots of diarrhea and stomach pain that lasted for days. At that point, I connected the dots between my morning toast and other gluten consumption and my stomach issues and decided to cut it completely out of my diet (November 2012).

 

Anyways, I've been gluten-free since November. At home it's a non-issue because gluten-free is the norm. During the school year I lived with non-gluten-free people, but I made all my own meals and had a separate cutting board/cooking pan and always cleaned the counters, etc and really didn't have any issues. I just started a year of volunteer service (2.5 weeks ago) and am living in an intentional community with 7 other non-gluten-free people. Not only are there gluten crumbs around, but other people are preparing many of my dinner meals (and we moved into a house...so old cutting boards/pans/utensils, etc.). I also started eating oats for breakfast, which I had cut out of my diet. Anyways, I haven't been keeping track but for at least the past week I've experienced diarrhea pretty much every single morning (multiple bathroom visits for 2-3 hours but then it would clear up), which I thought might be related to my oats consumption, so I cut them out again. The diarrhea got particularly bad a couple days again, so I started making all of my meals myself (lots of rice and cooked veggies to help the diarrhea). The diarrhea has ceased, but I'm left with lots of stomach pain now.

 

Would celiac symptoms come and go like that (diarrhea for a few hours every morning?)? I'm definitely not going back to ever eating gluten, but I guess the question now is how careful do I need to be? Clearly I'm having issues that need attention, but does it sound like celiac/gluten sensitivity? It's a lot of work to get 7 other people to be careful about CC. I hate that I can't be tested for celiac unless I eat gluten, because after all the pain I've been through this week there's no way I'd play around with eating gluten! 


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

It is very possible that you are getting gluten in your diet and you are reacting to it. All it takes to trigger the immune response is a small crumb, and repeated gluten ingestion will often make symptoms more severe. Is it possible to create a safer eating environment for yourself?

 

Is it possible that the water or food in the new place you are living is causing the problem? Is the water fine? If it's an old house, it could be molds or other chemicals causing a problem for you. Stress of living in a new place can throw some people off too.

 

Best wishes. I hope you figure it out and are feeling well soon.

Lock Newbie

I think you have nailed the problem. But you have been so good about being gluten free it might not be worth trying to go all gluten to be tested. The blood tests for antigens and the biopsy tests both need you to be on gluten to be accurate.

 

However, you can get the DNA test at any time and do not need to be eating gluten. If I were in your situation, I believe I would do that first. You can order the kit on your own if you don't want to involve your doctor. If your genes come back positive for celiac, I would think you can take it to the bank. This would not prove that you actually have villous atrophy at this time, but it would prove that you COULD at any point in the future and that a gluten free lifestyle is likely a very good choice for you.

 

But even if your genes are negative for celiac/gluten sensitivity, that does not mean gluten isn't your problem. In that case you may want to pursue further testing, but I think it is very likely you connected the dots correctly.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,182
    • Most Online (within 30 mins)
      7,748

    Portia
    Newest Member
    Portia
    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

    • 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.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
    • thejayland10
      thank you, i have been doing that the last few weeks and will continue to do so. I had not had my ttg iga checked since I was diagnosed 14 yrs ago so I am not sure if they ever dropped below the 15-20 range.    all my other labs are completely normal but I am concerned that this may be signs of refractor celiac or something else since I'm so careful with gluten-free diet 
×
×
  • Create New...