Accidentally eating gluten

[Elliemae7395]

Recently I ate a sandwich from what I thought was gluten fee bread. It said no flour. But I wasn't wise enough to realize that spouts didn't guarantee gluten free. It wasn't the same. I couldn't keep even swallows of water down or in for 3 1/2 days. Because I initially was diagnosed during the pandemic it took months to be diagnosed. Hard to get appointments. Anyway I stuck to the BRAT diet as best I could but had toast. I lost about 34 pounds by the time I was diagnosed. I also have GERD. I forgot how bad it was. I'm worried about the damage this "accidental poisoning" as I call it caused. Has anybody else had this happen?

[trents]

Welcome to the forum, Elliemae7395! What kind of sprouts were they? Alfalfa? Bean? Wheat?

"The BRAT diet is a restrictive diet that was once recommended for people, particularly children, with gastrointestinal distress like vomiting, diarrhea, or gastroenteritis. Evidence, however, does not support a benefit.[1] As of the 21st century, is no longer generally recommended as it is unnecessarily restrictive.[1][2] The diet was first discussed in 1926.[1]" https://en.wikipedia.org/wiki/BRAT_diet

Have you been formally diagnosed with celiac disease or NCGS (Non Celiac Gluten Sensitivity)? Is the toast you are eating with this BRAT diet made from wheat? If so, there's your answer right there. If you have celiac disease or NCGS you must commit to a zero gluten diet. Eating a lower gluten diet won't cut it.

[Elliemae7395]

Yes I was diagnosed after my colonoscopy and endoscopy. Before being diagnosed my sister an RN advised me to try following the BRAT diet until my diagnosis. After that, I followed a strict gluten free diet.As a matter of fact, I was hospitalized for spinal surgery a year later. For a good deal of that time I was stuck with gluten free meal replacement drinks due to continued errors with my meals. I didn't do the BRAT diet again until the accidental eating of gluten.  This time i only had potatoes applesauce yogurt and bananas for a few days. The sprouts were flax. The bread in question was in the freezer section with gluten-free items. It was an accidental purchase. The benefit of the BRAT diet for me this last time was to get my stomach ready for food again. No toast at all. I was more violently ill after my 18 months of 100% gluten free eating. Label reading was usually my safety but on this particular day I was exhausted. Trying to get back into the swing of post operative life.I just assumed. I'm in my late 60's. As a matter of fact, I didn't know it was possible to even have this diagnosis so late in life.

[trents]

Thanks for filling in the gaps from that first post. Makes more sense now. But tell me, did you think celiac disease was like type 1 diabetes in the sense that it necessarily manifests itself in childhood? I am perplexed in that lately on the forum we get a lot of people in your age group (which is mine as well) who are surprised when they get a celiac diagnosis late in life and it's like, "I thought that was only for kids!"

Do you think the flax sprouts were cross contaminated with wheat? Otherwise, flax shouldn't cause a celiac reaction.

[Elliemae7395]

I should have read the label before purchase. It was Ezekiel bread and if I had read the label I'd have seen the wheat listed. As I think it over it occurs to me that back in the 70s to early 80s a friends mother was diagnosed in her early 40s. She died within 2 months of her diagnosis. As an adult now I wonder if celiac really was the cause. But anyway I did think that it was like diabetes. I'd like to say that I realize we can't take anything for granted.Just because a store clerk puts something in the gluten-free section doesn't mean skip reading the label. I haven't seen any data about death resulting from celiacs. But I never want to be that sick again.

[trents]

Thank you for the extra information. I remember when Ezekiel bread was a fad. I was diagnosed at about age 51 and I'm 72 now. From what I've read there isn't much difference in the mortality rate for celiacs than for the general population. There are many health issues that can and often due spin off of celiac disease, at least for those who lived with it a long time before ever getting diagnosed properly or for those who ignore the need to be gluten free. I had an uncle back in Virginia who was diagnosed with celiac disease when in his 70s but chose to ignore it because he knew it would cut into his social life too much. He ate out a lot with friends. He lived to be almost 90 but had a lot of health issues the last 10 years of his life or so. So it mortality rate may not be as much the issue as quality of life when it comes to having celiac disease because of all the spin off health issues it can create.

[Elliemae7395]

Trents. I truly believe that following the gluten-free diet is way better then sitting in the bathroom with a trash can on my lap for several days. Until this recent bout I felt cheated. But the relief of feeling well again, well it'll do. I wondered about the chills. Along with the shakes or trembling. I read the shakes were the body's reaction to the huge fluid loss.

[trents]

I agree! When I get "glutened" I am violently ill for several hours. But you know, some people are "silent" celiacs and have no obvious symptoms before going gluten free. I was one of those. It wasn't until I had been gluten free for sometime that I reacted strongly to it like that. It's one of those things our body learns to put up with in some ways while we are still consuming it but once we give it up we lose whatever tolerance to it we may have had.

[Wheatwacked]

I often see the sprouted, whole grain, heritage grain and gluten free breads scattered haphazardly together.

BRAT diet, to a Celiac diagnosis is like gasoline to put out a fire.  Made sense until they discovered that Celiac is caused by gluten, which is in virtually all toast.  No surprise it doesn't really work.

It would be good for short term, exogenous events like food poisoning if the person is not GS.   The toast acts like an activated charcoal.   Melba Toast used to be popular with adults for tummy issues.

[Auldtwa]

On 7/23/2023 at 11:04 PM, trents said:

I agree! When I get "glutened" I am violently ill for several hours. But you know, some people are "silent" celiacs and have no obvious symptoms before going gluten free. I was one of those. It wasn't until I had been gluten free for sometime that I reacted strongly to it like that. It's one of those things our body learns to put up with in some ways while we are still consuming it but once we give it up we lose whatever tolerance to it we may have had.

Exactly my experience.  I had no tummy issues; celiac disease was diagnosed after severe anemia.  And now I am VIOLENTLLY ill when I am glutened.  I've been hospitalized twice because it has caused me to pass out--in one case, because my blood sugar went into the deepest hole because the food my insulin was controlling went into the potty. 

Ironically, I never get this from "created in a facility that also produces wheat products."  I seem to have a tolerance for trace gluten and and absolute intolerance for chunks of it.  Or else "created in a facility" is just legalese for "we take precautions but we aren't dedicated so some contamination might occur despite our efforts." 

[Auldtwa]

On 7/23/2023 at 11:07 PM, Wheatwacked said:

I often see the sprouted, whole grain, heritage grain and gluten free breads scattered haphazardly together.

BRAT diet, to a Celiac diagnosis is like gasoline to put out a fire.  Made sense until they discovered that Celiac is caused by gluten, which is in virtually all toast.  No surprise it doesn't really work.

It would be good for short term, exogenous events like food poisoning if the person is not GS.   The toast acts like an activated charcoal.   Melba Toast used to be popular with adults for tummy issues.

I have on several occasions pointed out to my grocery store that they might well be killing a careless shopper.  In one case, the gluten free version of cookies was not just NEXT to the gluten ones--the packages were actually intermixed, so the one in back of the one you just picked might be the wrong one.  I've also pointed out that their two-door frozen area labeled "gluten free" had exactly 2 gluten free products.  All else was "plant based" stuff and every single one had wheat.  I've also told both Costco and Amazon that their search for "gluten free" produces a lot of gluten products

For celiacs, reading the labels even of familiar products or those in a section called "gluten free" needs to be constant practice. 

[Elliemae7395]

I totally agree about the grocery stores. You have to be so vigilant. When I was hospitalized for spinal fusion I had trouble with my meals having gluten foods. My family brought in protein drinks and small containers of safe for me foods. You would think a hospital would get it right but not necessarily so.

[trents]

I retired from a hospital setting and I can tell you they often are not up to speed when it comes to offering safe foods to the celiac/gluten sensitive community. And yes, you think they would be. But like a lot of commercial entities, they are at the mercy of the claims of vendors and manufacturers and probably not consistent at avoiding CC in addition to that.

[Elliemae7395]

Very true. Luckily for me my family were helping me. Checking out the trays because I had to lay on my sides for several days and couldn't always see for myself, Bringing me food

[Auldtwa]

1 minute ago, trents said:

I retired from a hospital setting and I can tell you they often are not up to speed when it comes to offering safe foods to the celiac/gluten sensitive community. And yes, you think they would be. But like a lot of commercial entities, they are at the mercy of the claims of vendors and manufacturers and probably not consistent at avoiding CC in addition to that.

Actually my first hospitalization was food FROM a hospital cafeteria.  I was waiting for my daughter to finish an appointment.  I asked specifically what they had that was gluten free--the clerk pointed to a muffin.  The last thing I thought before I started urping was "wouldn't you know the only gluten free thing they have is pumpkin spice."  I'm pretty sure the woman thought I said "pumpkin" though the thing certainly wasn't pumpkin "free."