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

Trying To Figure Out If This Is My Issue


Whiskey

Recommended Posts

Whiskey Newbie

Hello all,

Long story short, I've had intestinal symptoms since I was about 12 years old, about 7 days per month I'd have bad cramping, have to run to the restroom many times per day.

I saw specialists back when I was about 14-16 eventually they said I had IBS and told me to live with it. I have been but I'm fearful every time I have to do something like go on a long drive, it really limits the activities I choose to participate in because I just don't know how I will feel.

I'm 33 now, and I think I may have stumbled on some kind of pattern for this, I suspect that I may have a Gluten Allergy of some kind,.. I cut gluten out of my diet and I feel MUCH BETTER. In fact I now realize that I had symptoms every day of my life, but I just didn't know what normal should feel like.

But,. here's the weird part. Does some gluten effect you more than others? I noticed upon reintroduction of Gluten that I can eat some things (Like a bagel for instance) with no effect. However other things (Sour cream at a restaurant is one example) gives me a severe reaction.

That I didn't even know had gluten in it, and actually forced me to stay home one day when I was on vacation.

I'm afraid that I may not have found the answer after all, because some small slip ups when I was cutting out gluten have had a dramatic effect, but I had 2 bagels this morning expecting a reaction and didn't get one.

Has anyone else had this experience? Or do you think gluten is not the answer for me?

It is worth noting that my brother and mother have the same symptoms, though my brother has a tiredness and insomnia component to it as well. They also have been unable to pin down what the issue is.

Thanks,

Whiskey


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

If sour cream bugs you, perhaps its a dairy issue?

Newbee Contributor

Have you had a celiac test? If not I'd suggest you get one. I didn't really think I had the disease as I only had some symptoms that kind of aligned with celiac (or so I thought). In retrospect I've probably had it my whole life and only got diagnosed at age 37. I have a lot of damage. Celiac can be hard to tell and doesn't have to have any symptoms. I wish I would have gotten tested earlier as now I'm having a lot of trouble healing.

Whiskey Newbie

If sour cream bugs you, perhaps its a dairy issue?

I can drink a glass of milk, or have cheese without issue. This is one of the things we suspected, but tests that were run for it came back negative.

Thanks for the suggestion,

Whiskey

Whiskey Newbie

Have you had a celiac test? If not I'd suggest you get one. I didn't really think I had the disease as I only had some symptoms that kind of aligned with celiac (or so I thought). In retrospect I've probably had it my whole life and only got diagnosed at age 37. I have a lot of damage. Celiac can be hard to tell and doesn't have to have any symptoms. I wish I would have gotten tested earlier as now I'm having a lot of trouble healing.

My Mom tells me that they tested me for this back when I was seeing specialists when I was 14 and it came back negative, they also did the rest of the food allergy tests and they were also negative. I'm not sure what kind of test they did exactly though. I do know they took blood and stool samples but that probably doesn't help.

My work has new insurance starting mid October, so I'm going to wait to involve doctors till then, I'd hate to start with one doctor and have to switch because they are not on the new plan.

Do you feel it every time you eat something with Gluten? Or does the fact that I can eat gluten sometimes rule this out as a possibility?

Thanks,

Whiskey

ciamarie Rookie

I know I didn't always have a bad reaction when I ate something with wheat, since I'd mostly stopped eating it years before I cut out all gluten last year. So being able to eat 2 bagels without an apparent problem doesn't necessarily mean you don't have either celiac disease or gluten intolerance. Even now, it can take me a few days to realize I've been slowly glutening myself with some new food item that probably has a small level of cross contamination.

Whiskey Newbie

I know I didn't always have a bad reaction when I ate something with wheat, since I'd mostly stopped eating it years before I cut out all gluten last year. So being able to eat 2 bagels without an apparent problem doesn't necessarily mean you don't have either celiac disease or gluten intolerance. Even now, it can take me a few days to realize I've been slowly glutening myself with some new food item that probably has a small level of cross contamination.

That is really promising, thank you. I was beginning to worry that I may not have found my issue after all.


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. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      3

      Feel like I’m starting over

    2. - Kirita replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Recovery from gluten challenge

    3. - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Recovery from gluten challenge

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Brain fog

    5. - trents replied to Scatterbrain's topic in Sports and Fitness
      3

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,285
    • Most Online (within 30 mins)
      7,748

    Kenny Waites
    Newest Member
    Kenny Waites
    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

    • Scatterbrain
      Thanks to those who have replied.  To Cristina, my symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell. To Trents, We didn’t do any of the construction but did visit the job site quite often.  While getting the old house ready we stirred up a lot of dust and I’m sure mold but haven’t been back there for over a month.
    • Kirita
      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant but also reliant on others to make her food (at school and home) but she didn’t have this problem prior to the gluten challenge when she went strictly gluten-free. It really makes sense to me that the gluten challenge inflammation hasn’t healed and I will be asking her doctors about nutritional issues. I ask for anecdotal stories because the research surrounding the gluten challenge seems to be inconsistent and inconclusive (at least what I’ve been able to find!). Thank you so much for your response!
    • Scott Adams
      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Brain fog, like other celiac disease symptoms, does improve after you to 100% gluten-free, and supplementation will also help.      
    • trents
      Were you doing any of the new home construction yourself? Drywall compounds and adhesives used in construction have been known to cause problems for some celiacs.
×
×
  • 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.