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

Crap! I Was Gluttened....

pain*in*my*gut

Recommended Posts

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

So I have been gluten free for 2 weeks, and in those 2 weeks I have been very careful with what I eat. I have not eaten out once, for fear of cc. I have had an AWESOME response to the diet!! No gas, cramps, bloating...it's like I had a stomach transplant!!! :D

So, today I got brave and went to Whole Foods and decided to try something different from their prepared foods deli area. I got a quinoa sweet potato patty with wild rice. I asked the lady behind the counter if it was gluten free, and she said yes, but they cannot guarantee anything because they have no designated gluten-free prep area. Annoying, because I thought they were all about alternative eating (vegan, dairy-free, etc.) and since they carry a lot of gluten-free stuff they should be aware of Celiac, right? Not so much...

It's been about 4 hours since I ate the patty (it was gross, BTW), and I have horrible smelly painful gas and nausea. My vision is extremely blurry tonight as well, which was a symptom that had gone away with the gluten-free diet. So, I guess it either had gluten in it and it wasn't listed, or it's cc. Either way, I am screwed. :(

I guess you really don't know how sensitive you are to cc until you experiment, right? For the record, my biposy was normal (my blood work was NOT normal), so I guess I don't "officially" have Celiac disease in my ignorant GI's opinion, but gluten makes me pretty darn sick!!

Ugghh...this stinks.....literally..... :blink:

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

Celiac.com Sponsor (A8-M):


rosetapper23 Explorer
rosetapper23
Posted

Oh....I've been there and done that. I'm so sorry you found out firsthand how dangerous prepared foods can be. I got cc'd on Sunday when I wanted to treat myself to something special--I bought some ginger snap cookies from Trader Joe's. They're supposed to be gluten free (at least, that's what the package says), but I was sicker than a dog on Monday....though I still had to go to work. I really do try to stay away from any processed foods because it's just not worth the risk of getting cc'd.

Hopefully, you'll feel better soon....

AVR1962 Collaborator
AVR1962
Posted

It takes awhile to figure out. I went to eating no boxed foods, no frozen entres, no fast food and no canned foods. Went I ate out it was salads, and still mostly is. Read every label. Amazingly I found wheat flour listed in my cookiung spray, in one of my favorite churizo sausage, in marinades, some ice cream and candy. Once your diet it tight and still get to feel bad and know it could not have been gluten then you have to figure what else could be giving you issues. I cannot eat high fructose, effects me like glutens.....it's in BBQ sauce, ketchup, candy, some drinks. One of my daughters cannot tolerate soy which in alot including mayo.

I have tried some of the gluten free products you can buy off the shelf like bread and cookies, and there is just something about them that does not set well with my stomach. It is not a gluten reaction, just like a yuck in my stomach so I don't eat them. I have done well with the mixes that are gluten-free and the pastas....I think it is alot of trial and error til you get it figured out.

dilettantesteph Collaborator
dilettantesteph
Posted

I guess you really don't know how sensitive you are to cc until you experiment, right?

So true. I still keep finding out.

I hope you feel better soon. As time goes on you do heal more quickly.

MaryJones2 Enthusiast
MaryJones2
Posted

I don't trust anything prepared from Whole Foods. I'm always surprised how unaware they are of gluten-free in that dept as they label everything vegan, etc.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I'm so sorry they got ya! :(

I don't feel safe eating anything I haven't made myself.

It seems when you first go gluten-free you aren't as reactive to cc because your system is tired from fighting the gluten you were getting on a regular basis. As time goes on those immune "soldiers" are rested up and even a small trace will have them up and fighting it in full force.

All you can really do is use this as a learning experience and go from there. It really stinks that you're trying to be so careful and you can't trust those in the food business to be aware and careful of cc! :o

Skylark Collaborator
Skylark
Posted

I don't know about your Whole Foods, but at mine employees are very specific that their prepared gluten-free foods are not safe for people with celiac disease. I don't see the point of gluten-free pizza, sandwiches, and salads if they're not celiac-safe but I guess there are enough people who are "gluten lite" that it helps their business.

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

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

I don't trust anything prepared from Whole Foods. I'm always surprised how unaware they are of gluten-free in that dept as they label everything vegan, etc.

I think it really depends on the store and the education level of the employee's. The 2 Whole Foods I frequent are phenomenal about cc in their prepared foods section even though they have the same CYA statement on their prepared foods. They would have to as it's not a dedicated facility. The stores I go to have employees that work those sections that have more food issues than I do so I trust their judgment when I ask the appropriate questions and I have never been glutened by anything I have eaten there.....in 6 years. I am extremely sensitive also and don't usually buy from shared facilities. I also use common sense when making purchases and wouldn't eat something that has been placed too close to the wheat stuff. I live in an area of the country which has really high awareness so that helps make a difference.

gigifree Rookie
gigifree
Posted

Whole foods is horrible! When I first went gluten-free-free (though not carefully) to see if I have a gluten intolerance, I would get prepared chicken and salads there. I never got better.

To make things worse, I went in looking for a multi-vitamine with iron that was gluten-free and the girl gave me a supplement that had gluten in it. Of course, I got nauseous, threw up and got sicker. Stay away from whole foods. Trader Joe's and henry's, I have has better luck with.

  • 1 month later...
norcal-gf Newbie
norcal-gf
Posted

I got "Gluttened" at Costco recently. They were giving out samples of Apple/Raspberry Juice that was suppose to only contain those ingredients. But hours later after drinking the juice I had a horrible stomach pain and the usual bathroom problems that followed. When I looked at the ingredients on the label they added "natural flavoring" which now I know to stay away from! No more samples of anything at grocery or supermarkets or Costco for me.

mushroom Proficient
mushroom
Posted

Hopefully, you can still sample the wine :D

Archived

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

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


  • Member Statistics

    • Total Members
      132,393
    • Most Online (within 30 mins)
      7,748
    HeckelCrazy
    Newest Member
    HeckelCrazy
    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

    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
×
×
  • 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.