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

Sometimes It's Like Being A Detective....


kristianne75

Recommended Posts

kristianne75 Newbie

I am so frustrated right now I could scream. I was glutened this past weekend, and I can not figure out where. The first sign that hits me is my skin, it gets red and itchy, and from there the joint aches, brain fog, etc. continues on....So I know that's what the problem is, and I can not figure it out. I have been racking my brain for 2 days trying to track it down. I thought it was antibiotics I was on for a sinus infection, but googling it proved me wrong. I have no clue from here. I will gladly avoid all of the things I used to enjoy if it will keep me healthy, but when things are so hidden...Ugh! It is so frustrating!


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



Celiac.com Sponsor (A8-M):



mommida Enthusiast

Are you sure that you weren't given a generic version of the antibiotic?

In the begining of gluten free life, we must have had a contaminated bottle of vanilla. It was driving me crazy trying to find out where the cross contamination was coming from. I went over every ingredient for every recipe and had to note which pot or pan was used for what we were eating and narrowed it done to the vanilla.

bridgetm Enthusiast

I have taken to calling unknown symptom-causing gluten sources the "unsub" as in Unidentified Suspect... Maybe a sign of too much time in front of the TV.

A full-blown gluten reaction is usually easy to trace for me, but when minor symptoms pop up from cross-contamination or maybe foods my stomach just isn't ready for yet, I agree that there is a lot of detective work. I end up scrutinizing my food diary, cross-referencing previous experiences. I usually label the time of onset of major symptoms in that book so I can go off of past experience and expand the search from there.

Often the cause of minor symptoms is something I never even considered and that can be very frustrating. In the spring I used a sunblock containing tocopherols. I was only a few months in and didn't know to watch for them. It took me a week to connect that sunscreen to my stomach symptoms and a flare-up of a rash (later ID'd as DH) on my arms which had improved after a week of gluten-free; it all clicked when I picked up a water bottle I had used that day and found a greasy hand print on the side and cap, not a stretch to assume it also ended up on the lip of the bottle. The sunblock was past its expiration date anyway so there was no buyer's remorse when I tossed it in the trash.

GFinDC Veteran

It's exactly like being a detective, a food detective. The detecting work is easier if you narrow down the list of food suspects. So, for example, you could eat simple, whole foods meals, with limited spices and cook them yourself at home. Wash your produce before cooking. Pretty soon the list of suspects will be reduced to you as the cook and whatever you put in your meals. Knowing those meal ingredients goes a long ways towards solving the mystery. And a classic detective technique works also, separate the suspects into different rooms. So eliminate foods (suspects) for a week that might be causing problems, then add them back for a week and see if they actually do cause problems. This works best if you are eating a small list of foods to begin with, say 5 or so.

Remember everyone is a suspect, so no foods/drinks, meds/vitamins that enter your mouth are above suspicion. They all need to be examined, sometimes several times over if there is any doubt. This is where a bright, naked light bulb in a loose swinging fixture comes in handy. Don't let them fool you either, they can always come back later as new food intolerances. Keeping a food journal can help, as they can change their story later but you can catch them at it.

gabby Enthusiast

Have you checked non-food items? I noticed that whenever it rained I would feel slightly glutened. Then one day I realized that someone in our household was eating gobs of gluteny foods and then using my UMBRELLA, which I would use later, holding the handle with my bare hands, and then happily eating my snacks with my bare hands. (note: it took me about 4 years to figure this one out).

kristianne75 Newbie

You guys are so right, I have to totally retrace my steps and think outside the box a little here. Thanks for some good advice about things and for understanding the issues! No one else does.......

Leah Banicki Newbie

I have taken to calling unknown symptom-causing gluten sources the "unsub" as in Unidentified Suspect... Maybe a sign of too much time in front of the TV.

A full-blown gluten reaction is usually easy to trace for me, but when minor symptoms pop up from cross-contamination or maybe foods my stomach just isn't ready for yet, I agree that there is a lot of detective work. I end up scrutinizing my food diary, cross-referencing previous experiences. I usually label the time of onset of major symptoms in that book so I can go off of past experience and expand the search from there.

Often the cause of minor symptoms is something I never even considered and that can be very frustrating. In the spring I used a sunblock containing tocopherols. I was only a few months in and didn't know to watch for them. It took me a week to connect that sunscreen to my stomach symptoms and a flare-up of a rash (later ID'd as DH) on my arms which had improved after a week of gluten-free; it all clicked when I picked up a water bottle I had used that day and found a greasy hand print on the side and cap, not a stretch to assume it also ended up on the lip of the bottle. The sunblock was past its expiration date anyway so there was no buyer's remorse when I tossed it in the trash.

Love the 'unsub' line.


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. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

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

      how much gluten do I need to eat before blood tests?

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

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

      Question

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

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    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

    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • 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.