Help me figure out what glutened me!

[MOOO]

Somewhere around last Monday the 10th of September I was glutened, but I cannot figure out what did it to me! I have a few suspects though... what do you think?

1.  Chili powder (Full Circle Market brand, no gluten ingredients but not labeled gluten-free)

2.  Fish Tacos I had on the 7th at a restaurant.  There easily could have been some CC with these tacos, but would it really take me 3 days to notice a reaction?

3.  Levothyroxine 0.025mg: Manufacture, Lannett (Started this a few weeks ago)

4.  Raw Cashews from Costco (Label say manufactured on equipment that also processed tree nuts, says nothing about wheat). 

5.  Other single ingredient spices.  I make a lot of curries and such, and use a lot of spices.  I have read conflicting info on whether single ingredient spices are safe or if they are contaminated, mine are mostly simply organic brand. Should I be worried about these?

Any who, this is the first time I have really felt like I have been glutened since I went gluten-free about a year ago. When will this be over? My main lingering symptom is horrible GERD that will not leave me no matter what meds I try. 

 

[ravenwoodglass]

IMHO it was likely the fish taco. For myself 3 days is the time to a gut reaction even though I get some discomfort in muscles and joints and a day of depression before the severe gut stuff shows up.

Have you tried some liquid Pepto Bismal for the stomach pain?  It usually gives me some pretty quick relief but don't know if it would help you.

[cyclinglady]

I vote for the tacos too.  

Why the delay?  It can take time for your body to ramp up and start attacking.  We are all different and no one has really studied “glutenings”.  

Hope you feel better fast!  

My go to?  Plain stews and soups.  The mushier the better because everything hurts to digest!  

 

[MOOO]

Oh really? I didn't know it could take so long for the worse of the reaction to start.  I bet you are right.  Thank you for the reply.

[cyclinglady]

Hopefully, your body will stop making antibodies soon.  

I have been glutened a few times over the past five years.  I have suspected a few products but typically since it takes a while for me to get really sick, I can not always figure out for sure what got me.  I have found that once I ramp up my gliadin antibodies, it sets off my other autoimmune issues.  My symptoms can last for months, I kid you not.  A month or two to suffer digesting anything (yeah, vomiting, pain, and the big D) and then months of weird things like all-over hives that happened daily for six months!  Ugh!

As a result, I avoid eating out.  When I do, I look for restaurants that are highly recommended by celiacs.   I prefer 100% dedicated gluten free.  I do enjoy a drink when dining with friends and family and I pack a cooler for me.  

[MOOO]

cyclinglady, That is so interesting.  I think I am finally convinced it is just not worth eating out, ever.  I also have autoimmune thyroid disease which I think is also being wacky since I was glutened. Lets just hope everything settles down soon!

[apprehensiveengineer]

44 minutes ago, MOOO said:

cyclinglady, That is so interesting.  I think I am finally convinced it is just not worth eating out, ever.  I also have autoimmune thyroid disease which I think is also being wacky since I was glutened. Lets just hope everything settles down soon!

It is an unpopular opinion, but I think in the balance of things that eating out at normal restaurants is something that should be avoided unless necessary (and it is rarely necessary if you have some forethought and mental/emotional flexibility). Fact is, most restaurants are not truly able to cater adequately to celiac customers - I've lived in with gluten-eating roommates, and I find it highly unlikely that your run-of-the-mill restaurant is going to come close to doing the things that I had to do to in that environment prevent myself from getting sick.

I think sometimes people with celiac disease/allergies get stuck in the mental attitude of "I deserve" or "it's not fair," when it comes to eating out. Fact is, when you have a medical condition, you can't always expect to maintain the status quo and stay healthy. Your immune system and restaurant industry economics don't care about your personal justice - you need to look out for yourself, and be solely accountable for your health. Sorry if that sounds mean or harsh, but I think that's the sort of tough lovin' that some people need to hear.

Bring you own food, pack snacks, shop at grocery stores when traveling. Use the Find Me Gluten-Free app to identify dedicated restaurants or restaurants that are highly vetted.

[MOOO]

apprehensiveengineer, You are totally right, thank you, I needed to read that.  I actually think that giving up eating out is a small price to pay for never feeling this sick.  I think when I am feeling good I just forget how awful it is to be glutened, so I risk it and hope for the best.  I need to be better.  I am just glad to know that the restaurant really was the likely cause of my glutening so I can learn from my mistake. 

[Ennis-TX]

9 hours ago, MOOO said:

apprehensiveengineer, You are totally right, thank you, I needed to read that.  I actually think that giving up eating out is a small price to pay for never feeling this sick.  I think when I am feeling good I just forget how awful it is to be glutened, so I risk it and hope for the best.  I need to be better.  I am just glad to know that the restaurant really was the likely cause of my glutening so I can learn from my mistake. 

You can try to search a wider area for 100% gluten free places, I got lucky and found 2 places down in San Antonio when on vacation a few years back, then last year found a British style pub bit north of Dallas, which has completely a separate gluten free kitchen and the owner is a father to 2 celiac children.
I am even starting my own 100% gluten free food truck and found a few other trucks from a group I joined that are owned by a celiac and 100% gluten free.

Just something to look forward to, but for now best play it safe and eat at home from whole food ingredients cooked yourself. I wish you luck in getting over your issues....I am still playing the game of what to eat after a exposure from 4 weeks ago and my gut is still throwing hissy fits over things being to spicy or rough on it and D at least 2twice a day.

[MOOO]

Ennis_TX

I'm glad to hear I'm not the only one who takes SOOOOO long to get back to feeling normal.  Great advice I will look into dedicated gluten-free places to eat, thank you.

[vicwlk]

This website will tell you the ingredients in your prescription drugs Open Original Shared Link 

[ravenwoodglass]

13 hours ago, vicwlk said:

This website will tell you the ingredients in your prescription drugs Open Original Shared Link 

This link leads to a sign in page for a gov site with stern warnings about unauthorized access. Did you type the link correctly?

[vicwlk]

SORRY! Open Original Shared Link It's the US National Library of Medicine

Edited September 21, 2018 by vicwlk

[tessa25]

1 hour ago, vicwlk said:

SORRY! Open Original Shared Link It's the US National Library of Medicine

That link doesn't give ingredients of prescription drugs either.

[vicwlk]

4 hours ago, tessa25 said:

That link doesn't give ingredients of prescription drugs either.

You have to search through it. this site is easier and I searched your drug. scroll down to the manufacturer Open Original Shared Link

[tessa25]

1 hour ago, vicwlk said:

You have to search through it. this site is easier and I searched your drug. scroll down to the manufacturer Open Original Shared Link

Thank you! That link is great!

[apprehensiveengineer]

On 9/19/2018 at 11:58 PM, MOOO said:

apprehensiveengineer, You are totally right, thank you, I needed to read that.  I actually think that giving up eating out is a small price to pay for never feeling this sick.  I think when I am feeling good I just forget how awful it is to be glutened, so I risk it and hope for the best.  I need to be better.  I am just glad to know that the restaurant really was the likely cause of my glutening so I can learn from my mistake. 

Glad you took it the right way :), sometimes the internet makes tone hard to convey.

I think it is tough because people with other medical dietary restrictions (eg. anaphylactic peanut/nut allergies) tend to be able to eat out pretty normally. I know many people with such nut allergies, and honestly some of them don't even mention it at restaurants/catered events (not something I would recommend - just reporting what I've seen). I think this sets a precedent in the mind of many newly diagnosed celiacs, as well as the general public about the ability of restaurants to deal with allergies/celiac.

I think the thing that is forgotten is that peanuts are not used in the same way that wheat is, making it a lot easier to minimize risk of CC in most types of restaurants. That, and because awareness of peanut allergies has been "a thing" for ~25 years, there is a lot less superfluous use of peanuts/nuts in foods. When I was a little kid, you'd find bowls of peanuts at the bar, but that is not a thing now. Hopefully celiacs will get to the level of being automatically thought of in food/restaurant situations, but today is not that day.

[No more doughnuts]

Hi there...Not sure...I have had to go through the same process trying to figure out how I got zapped with gluten...and it's no fun.

Here's a question...are you being careful with other products that have gluten, such as shampoo, hair color, body wash, toothpaste, make up, and things like that???  Lots of those products have gluten, so beware.

Also, I got VERY sick after eating gluten-free tacos.  I wondered WHY?

Well, I learned that CORN is a grain that contains Prolamines and Prolamines can set off a reaction.  Oats are also high in Prolamines...even if they say gluten free...they are Grains...and if they are high in Prolamines, you may get a reaction.  Now that I have stayed away from grains that are high in Prolamines...I have been fine!  I learned that from Dr. Osborne...he's on youtube.  He has a lot of videos on Gluten and celiac disease.

Hope this helps!