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What Did I Do Wrong This Time?!?!?!?

Walter S

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Walter S Explorer
Walter S
Posted

Hello All. I had another party yesterday. It was a second birthday for my friend's son. I have a lot of friends with young children and many godchildren, so I attend a lot of parties. Well, I thought for sure I had everything planned out to be safe this time. I brought all of my own food (wrapped) and onl ate what I brought. I had a gluten free bagel before the party (I was there very eraly helping set up for the party and picking things up because the boy's mother and I are very close friends and she is going htrough a divorce so I try to help her as much as possible!) So then during the party I had a plain baked chicken cutlet (which I cooked at home) on gluten free bread. I drank decaf tea (black), which I have been drinking right along, and water. The only other thing I had was a handful of blue organic corn chips which I understood to be gluten free as per the literature I received from my nutritionist. I have been having blue corn chips on accassion for a snack or with a sandwich at lunch. The only thing different is that I got a different brand at the supermarket when I was picking up the food for the party. Could that be the problem? The fact that it was a different brand. I was doing ok most of the day, but after most guests had left I was helping to clean up when the diarrhea struck very bad. I was running in and out of the bathroom and just barely making it. Eventually I had to leave without being able to help finish cleaning up. I felt bad about that, but of course I couldn't help it. Basically anytime I eat away from home (even though I bring my own food) I still get sick. It's frustrating and embarassing. I'm not sure what else to do or what I am doing wrong? The only thing I can think of is that the brand of blue corn chips was different and so next time I will take care of that, but is that likely to be the culprit here? I'm just not sure. Thanks in advance for any input you might offer. I know people have said I should give it time becasue it takes months to heal and feel better, but it doesn't seem like a coincidence that everytime I eat away from home that I get sicker than usual. Perhaps it is just a matter of time, but I wonder if I am doing something wrong and not realizing it.

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MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Different companies have different ingredients and policies. You should always call or write companies to see if they are gluten-free. Good luck and good job on bringing you own food and having fun and I am sorry you got sick, WalkterS.

Kristina Marie

Carriefaith Enthusiast
Carriefaith
Posted
The only thing different is that I got a different brand at the supermarket when I was picking up the food for the party. Could that be the problem? The fact that it was a different brand.
Yes, sometimes gluten-free chips are produced on the same lines as gluten chips. Contacting the company is the only way to really know if they are safe.
Walter S Explorer
Walter S
Posted
  • Author

This may be a stupid question, but if I was to contact a company and ask about if their product is made in the same factory with other products that do contain gluten, what exactly do I ask them? How do I word it? Is there someone specific I should ask for? I just am imagining talking to someone at a factory and them sayng "I don't understand? What are you talking about?" So I want to be prepared to know exactly what to say and how to word it so I get the information I need. When I was first beginning to eat gluten-free, I would ask at stores for gluten free products and people would look at me funny and then not be able to help me. I would say, "Do you have any gluten free bread?" They would look confused and then answer and say yeah, I guess so. All of our bread is in Aisle 5" Of course they would not actually have the gluten free bread and I would soon discover that nobody knew what I was looking for.

Karen B. Explorer
Karen B.
Posted
This may be a stupid question, but if I was to contact a company and ask about if their product is made in the same factory with other products that do contain gluten, what exactly do I ask them? How do I word it? Is there someone specific I should ask for? I just am imagining talking to someone at a factory and them sayng "I don't understand? What are you talking about?" So I want to be prepared to know exactly what to say and how to word it so I get the information I need. When I was first beginning to eat gluten-free, I would ask at stores for gluten free products and people would look at me funny and then not be able to help me. I would say, "Do you have any gluten free bread?" They would look confused and then answer and say yeah, I guess so. All of our bread is in Aisle 5" Of course they would not actually have the gluten free bread and I would soon discover that nobody knew what I was looking for.

I've had very good luck with calling companies. The people answering the phones are usually a lot more knowledgeable than the guys at the grocery store (and if they aren't, they are sitting in front of a computer that is). After all, they only have their product line to answer for, the grocery store has everyone's product lines to answer for.

However, when I first was diagnosed, I had a ZonePerfect meal that should have been gluten-free by the label and about 20 minutes after lunch, it literally felt like someone punched me. When I called, they stalled and it took a week of daily calls before they finally admitted that they didn't make the product themselves but it probably had cross contamination. Why they wouldn't say that up front, I don't know.

If they don't seem to know what you are talking about, don't be bashful about asking them who would be more knowledgeable about their product.

Carriefaith Enthusiast
Carriefaith
Posted

I personally don't like calling so I e-mail companies or get information from someone who has called. When I e-mail, I say something like, "Does (product names) contain gluten (wheat, barley, rye, oats)? If not, is it produced on the same line as products that conatain gluten?" I would say that almost every time I get a response, the author of the e-mail seems to know what they are talking about and I often get a blurb on what celiac disease is (I guess to prove that they know what they are talking about).

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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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