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

The Grocery Store

pipermarau

By pipermarau
in Super Sensitive People

Recommended Posts

pipermarau Rookie
pipermarau
Posted

My gluten problem is on the extreme side, so much that I wince at shaking a stranger's hand or using a public pen.  I'm just curious if anyone has had issues with walking past the Bakery corner while shopping for groceries.  One of my stores has all the fruit and veggies right next to the bakery, so I have to rinse the food 'just in case'.  Some days I think just smelling the cookies and donuts gets my symptoms flaring.  I've learned to shop after they close the kitchen down but some days I have to go before 5pm and that is when I seem to be randomly glutened.  

 

If anyone else out there feels like a constant victim, you are not alone.  I wish it was as easy as reading labels for me but hugging my friends can get me sick :(  When I go out in public I touch nothing unless I have to buy it, and then when I get home I change clothes.  We all have to be extra careful so I just want to send a virtual hug to everyone, especially if they are feeling like their house is the only safe place left.

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

Celiac.com Sponsor (A8-M):


LauraTX Rising Star
LauraTX
Posted

Hi Piper,

I move this topic and your pet food topic to our super sensitive celiac section since the experience of being glutened from the sources you talk about are atypical for most people with Celiac.  That way people know where you are coming from and can reply accordingly.   Feel free to post things there so you can get the answers you need.

 

Do you have a wheat allergy as well as Celiac disease?  The things you describe, like hugging gluten eaters... I have not heard of any seuper sensitive Celiac even experiencing those.  Do you struggle with anxiety about gluten? 

BlessedMommy Rising Star
BlessedMommy
Posted

Have you considered avoiding grocery shopping altogether? In this day and age, we have technological advances that allow us to bypass grocery stores if we want to.

 

I get fresh produce and eggs from farms. (I have an organic farm that allows you to pre-order whatever fruit and veggies you want and pick it up on a weekly basis)

 

As far as non-perishables, I get them from Amazon and Vitacost. People who eat meat and drink milk can also source them from farms.

 

I'm not super sensitive, but I like the convenience of having things dropped at my door. Plus, it's easier to avoid buying stuff that I don't need! 

MycasMommy Enthusiast
MycasMommy
Posted

I don't worry about hugging, but I DO wash the fruits and veggies for that reason.  My new grocery store here in Seattle is great. The Bakery is on the opposite side of the store than the produce.  In Hawaii, they we next to each other and I know I have gotten sick once or twice from that. If I walk down the bread aisle or stand in the bakery of the store, I DO smell the smell that I know I will get sick from. I have not gotten sick from it. At least not noticeably, but I would not be surprised that if I stood there for a while, that I did.  I did not realize this was a super sensitive thing. I have considered wearing a facemask to the grocery store in the past but I never did. If I ever get sick from standing in the bakery, I will though!

Shell156 Apprentice
Shell156
Posted

I've never gotten sick from just hugging someone, but I have gotten sick from hugging someone and getting their hair in my mouth! I guess I hug a lot and I wouldn't have thought anything of it but after a few times I was researching and hair products have terrible amounts of gluten in them. Boo. I am super super sensitive. Most people would never have to consider such a thing but I'm just sharing my experience so you can feel less alone.

  • 3 weeks later...
pipermarau Rookie
pipermarau
Posted
  • Author

this is a reply to All:

 

Thank you for moving the thread to a place where it will be read by other sensitive patients.  I certainly do have anxiety about glutens since my near diagnosis.  the Drs do not know if I have celiac, allergies, or a crazy form of IBS that reacts to glutens.  Before making it to the Dr I screwed up their celiac test by going on the diet three months before they could scope me.  It was a choice of life or death at the time and I chose to live long enough to get the tests.  I wish I had known you needed to still be on wheat to get a "good" result for celiac but I was 82lbs and dropping.  When they allergy tested me nothing came up.  NOTHING.  We found it strange since I do have a bad skin reaction to wheat and latex products.  The blood test was never redone and I've almost given up on asking for a scratch test or the second type of allergy markers test.  I forgot what it is called but insurance companies don't like to pay out for that test since "so few" people need it.  I also did not test positive for any genetic marker in my blood.  Like the allergy markers, there might be more than one way to test blood for celiac but I'm not sure if it has been looked in to.  The Drs diagnosed me with severe intolerance, one wrote the word Celiac down, and another claimed IBS until I stopped seeing him.  The GMO Wheat strand theory has not been tested.  I might be one of the patients that can eat the Natural wheat grain that existed before the government "enhanced it" to make it easier to grow in large crops.  I have similar problems with Corn that is not what I consider to be natural.  

 

The only thing we know for sure is that I get very bad and sometimes instant reactions by skin and through my digestive tract with wheat containing foods.

 

The hugs and handshakes are only dangerous when I'm around small children (cookie hands..) and people that have recently eaten/cooked and smudged food residue on their shirts.  Most of my friends warn me so we do the fist bump thing when they are not safe.  My new therapist did the fist bump with me when we met.  He also offered me hand sanitizer after the session.  I'm putting him on the list of Good Drs.

 

The bakery is likely in my imagination, but when the flour is flying in the air the danger can be very real.  I need to try Farmer's Markets but I admit being anxious to new things.  A former therapist suggested I find a nice old family with a big yard and ask them if I can garden some veggies in the proper seasons if I share the bounty.  A lot of people in my area have land so that can work out, if I make the right connection.  My mom had a farm life as a kid so when she had her own land she started growing food and spices.  My dad's father also kept a similar garden on his land.  I'll be 30 this year so maybe it can mark a new chapter of my life.

 

In all my hindsight it seems my issues are mostly with GMO foods.  When I avoid them my body does better and I put weight on.  Celaic.com is the only place that seems to be able to help me with my diet change since it began with Wheat nearly killing me.  Most of my food has been "Organic" since the switch to a gluten free life and I am only now noticing the other safe grains are also GMO if I read the labels closely.  I am going to all foods Non-GMO, cage free, and as free from a factory as it can all get.  Sometimes it feels extreme but when I get sick for no reason after eating a simple gmo snack chip I feel like it isn't just me in my head taking things too seriously.

 

Shampoo and other products are not very good to me.  I've been using Dr Bronner's All in 1 soaps, Kiss My Face, and Tom's of Maine to get by.  If I color my hair I have to find "regular" shampoo or the other soaps kill the dye.  When the dye fades I have to go back to Kiss my face soap for shampoo or my hair goes crazy.  It it like the chemicals feed off one another when the dye is there.  

 

3+ years Gluten free and still just as confused as I was the day I switched.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,556
    • Most Online (within 30 mins)
      7,748
    Rachel Wilson
    Newest Member
    Rachel Wilson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.