New to celiac disease - did I accidentally have gluten?

[celiac00]

Hi, 

I am new to celiac disease, so I am still trying to figure out how to know if I accidentally had gluten. Last Friday someone made me a gluten free cake, which I ate twice on Friday and felt incredibly nauseous, never felt so nauseous before, especially not for as long as I did that day. Saturday I had it again and felt nauseous again. Sunday the same, and then it occurred to me that it could be the cake. Then during this week I've been feeling that my vision gets blurred at times, I am slightly bloated and 2 massive painful pimples appeared in my back. Had anyone experienced something like this before?

[trents]

Welcome to the forum, celiac00!

It is possible that the person who made the gluten free cake inadvertently included gluten somehow in the gluten free cake. Is the person who made the cake someone who is an "experienced" celiac? They may have used ingredients that do not list wheat, barley or rye but may have come in contact with those ingredients during processing. We call that cross contamination. Many people do not realize how gluten is hidden in the food supply without warning.

It is also quite possible you are intolerant to other ingredients besides gluten in the cake. Dairy, soy and egg intolerance are common among those with celiac disease but it can be almost anything. Do you have access to the recipe used to make the cake?

 

[celiac00]

Thank you! I'm really glad to have access to this forum.

No, the person is not an expert at all.. so I guess there was something that could have been cross contaminated. I don't want to ask to much so the person doesn't think I am ungrateful, but I will ask about the recipe to check what could have been cross contaminated.

I don't think I have any intolerances, at least not the most common ones that you mentioned. I eat all of those things almost on a daily basis and haven't had a problem before.

[trents]

One of the things we all learn, usually trough negative experience over time, is that you can't trust the good intentions of those who want to make food for us but don't have to deal with the phenomenon of celiac disease themselves. Those with experience are either celiacs themselves or are in the position of having to regularly cook for someone who is. You have to develop some gracious ways of saying, "Thanks but no thanks." Working up some informative but concise handouts to give to family and friends may also be helpful.

[GodsGal]

8 minutes ago, celiac00 said:

Thank you! I'm really glad to have access to this forum.

No, the person is not an expert at all.. so I guess there was something that could have been cross contaminated. I don't want to ask to much so the person doesn't think I am ungrateful, but I will ask about the recipe to check what could have been cross contaminated.

I don't think I have any intolerances, at least not the most common ones that you mentioned. I eat all of those things almost on a daily basis and haven't had a problem before.

Hi! Welcome! Another question I would have is was the cake a boxed mix, or made from scratch? One thing that I had to learn was that just because something is labeled "gluten free", that doesn't mean that there is no gluten in it. Here in the USA, food items can be labeled gluten free and still have up to 20 ppm of gluten. I don't do well with 20 ppm. I always look for the certified gluten free logos. They are certified to 10 ppm or less. 

[celiac00]

8 minutes ago, trents said:

One of the things we all learn, usually trough negative experience over time, is that you can't trust the good intentions of those who want to make food for us but don't have to deal with the phenomenon of celiac disease themselves. Those with experience are either celiacs themselves or are in the position of having to regularly cook for someone who is. You have to develop some gracious ways of saying, "Thanks but no thanks." Working up some informative but concise handouts to give to family and friends may also be helpful.

Thank you for the advice, I will try to work on the "thanks, but no thanks " 😅

[celiac00]

4 minutes ago, GodsGal said:

Hi! Welcome! Another question I would have is was the cake a boxed mix, or made from scratch? One thing that I had to learn was that just because something is labeled "gluten free", that doesn't mean that there is no gluten in it. Here in the USA, food items can be labeled gluten free and still have up to 20 ppm of gluten. I don't do well with 20 ppm. I always look for the certified gluten free logos. They are certified to 10 ppm or less. 

I assume it was made from scratch, she told me she bought certified gluten flour and next day she brought cake. I tried to look at other ingredients such as chocolate powder, sprinkles.. but couldn't find anything with gluten.

[Wheatwacked]

My sister-in-law had a great way of dealing with it. She would graciously accept the food gift, then drop it in an out of sight dumpster on the way home. Self-preservation and no hurt feelings and no temptation to try it.

[trents]

58 minutes ago, Wheatwacked said:

My sister-in-law had a great way of dealing with it. She would graciously accept the food gift, then drop it in an out of sight dumpster on the way home. Self-preservation and no hurt feelings and no temptation to try it.

But what if the gifter later asks you how you liked it?

[Wheatwacked]

I don't think it actually ever happened. "It was good, thank you". Most people are not as pathologically truthful as I am.

[trents]

18 minutes ago, Wheatwacked said:

I don't think it actually ever happened. "It was good, thank you". Most people are not as pathologically truthful as I am.

I could not misrepresent the truth like that myself. If you start dealing with it that way you will just encourage the other person to make more unsafe food for you for which you will have to keep lying.

IMO it's better to be honest up front and say, "Thanks, but I can't eat it. I do appreciate your thoughtfulness but I've  been made ill by eating things others made for me who didn't have a full understanding of how gluten finds it's way into food preparation. It can only take a trace of gluten to make me ill."

[GodsGal]

3 hours ago, celiac00 said:

I assume it was made from scratch, she told me she bought certified gluten flour and next day she brought cake. I tried to look at other ingredients such as chocolate powder, sprinkles.. but couldn't find anything with gluten.

It could very well be cross contamination. It's really special that she tried!

[GodsGal]

3 minutes ago, GodsGal said:

It could very well be cross contamination. It's really special that she tried!

But I think that a polite decline is best.

[trents]

4 hours ago, GodsGal said:

Hi! Welcome! Another question I would have is was the cake a boxed mix, or made from scratch? One thing that I had to learn was that just because something is labeled "gluten free", that doesn't mean that there is no gluten in it. Here in the USA, food items can be labeled gluten free and still have up to 20 ppm of gluten. I don't do well with 20 ppm. I always look for the certified gluten free logos. They are certified to 10 ppm or less. 

I think "Certified Gluten Free" has stricter standards like maybe 10ppm.

[celiac00]

7 hours ago, GodsGal said:

But I think that a polite decline is best.

I agree. It was just a difficult situation to say no, because it was at work, after lunch, and it was very clear that she made it gluten free because of me. Really need to work on declining,  I definitely struggle with that.

[GodsGal]

10 hours ago, trents said:

I think "Certified Gluten Free" has stricter standards like maybe 10ppm.

Yes. GFCO certifies at 10ppm. After much digging on the internet, I discovered that the National Celiac Association certifies at 5ppm. 

[GodsGal]

On 2/10/2022 at 7:54 AM, GodsGal said:

Yes. GFCO certifies at 10ppm. After much digging on the internet, I discovered that the National Celiac Association certifies at 5ppm. 

Quick correction here. The Celiac Sprue Association certifies at 5ppm. Sorry for any confusion!