Violent reaction to gluten after going gluten-free?

[Mary D63]

Hi! I'm new to this forum and happy to have found you all. Just wondering if any of you, Celiacs, have violent reactions to accidental gluten poisonings?

I was diagnosed in 2012 as a silent celiac (I had zero symptoms. No stomach aches, bloating, etc.) My bloodwork showed low B12, D3, Iron so my endocrinologist tested me for celiac disease (celiac disease panel - serum). All my numbers were super high so I was told "Go gluten-free and we'll test again". After 6 weeks, 4 of the 5 tests were in the normal range. Last one took 18 months to test negative. (BTW, I was at the same time being diagnosed with Hypothyroidism - NO Hashimoto's though:))

FYI, I have continued to test in the normal range for all of my nutrients, since staying on this very strict gluten-free diet. And after several years of the celiac disease panel testing negative, we don't even run that panel anymore.

So here's the rub...

Since then, if I accidentally ingest gluten - even just cross contamination - I will have a violent reaction. I can vomit (sometimes literally projective vomiting) and have diarrhea for 3 to 4 hours. I vomit so much it gets down to the bile. I go to the bathroom until there is nothing left. 

It feels to me like my body is having an allergic reaction more than an autoimmune response. If not, why is my body violently trying to purge every trace of the gluten I just ingested vs. just bloating or stomach ache?

Has anyone else experienced anything like this?

[trents]

This is not abnormal at all, Mary. I get almost exactly the same reaction as you do when I have an accidental ingestion of gluten to any extent. Before my diagnosis 23 years ago, when I was consuming gluten daily, my symptoms were very vague. A little tummy discomfort, occasional diarrhea, headaches. Now, after more than two decades of not being exposed regularly to gluten I have lost all tolerance to it and my symptoms are as you describe. I get violently ill with intractable emesis and severe abdominal cramping for 2-3 hours followed by several hours of diarrhea. When we poison ourselves daily our bodies must develop some degree of tolerance. But when we take that away for a long time the tolerance is all lost.

[Mary D63]

Thank you for sharing your experience. It seemed weird to me to go from zero symptoms (I didn't even believe the bloodwork and diagnosis at first...) to increasing negative reactions after being "gluten clean" for 10+ years. But your last sentence makes total sense...

If I may, let me ask you a follow-on? Do you have anxiety about going out to restaurants? Do you take any kind of supplement before you dine out that promises to breakdown the gluten enzyme in case your meal is cross-contaminated? 

[harleygal726]

Mary have been gluten free since 2012. I have occasionally been glutened from cross contamination while dining out and have symptoms: stomach cramps, diarrhea, nausea, achy joints, fatigue and headache.

Last year I was dining out with friends at a Greek restaurant and I assumed the chicken lemon soup was made with rice pasta. 

A few hours after dinner I became very nauseous and I was driving home. I kept trying to hold it back and I could feel it working it's way up in my esophagus. Needless to say I just got my window down in time, I pulled over and finished in a parking lot. I also had stomach cramps and diarrhea. 

So in my opinion when you have no gluten and then a bunch of gluten, the symptoms can be severe.

Take care.

[trents]

36 minutes ago, Mary D63 said:

Thank you for sharing your experience. It seemed weird to me to go from zero symptoms (I didn't even believe the bloodwork and diagnosis at first...) to increasing negative reactions after being "gluten clean" for 10+ years. But your last sentence makes total sense...

If I may, let me ask you a follow-on? Do you have anxiety about going out to restaurants? Do you take any kind of supplement before you dine out that promises to breakdown the gluten enzyme in case your meal is cross-contaminated? 

I have some anxiety about eating out at restaurants but I'd call it more like vigilance. I do not use gluten breakdown supplements. Those supplements themselves make me ill, believe it or not. I'm not a super sensitive celiac so I can get away with a little cross contamination when eating out. As long a wheat/barely/rye are not intentional ingredients I am generally okay with a little CC on occasion. 

[harleygal726]

I used to get a little anxious but not so much anymore. I do use Enzymedica GlutenEase Extra Strength when I eat out and that's for possible "Cross Contamination" only. I never intentionally order anything that has gluten in it 

[Scott Adams]

I can't speak for that brand specifically...there are many such products on the market, but I would only consider ones that contained AN-PEP enzymes, as there have been many studies done on AN-PEP which show that it can break down small amounts of gluten in the stomach, before it reaches your intestines. One of our sponsors here, GliadinX includes AN-PEP, and has links to the studies at:

https://www.gliadinx.com/publications 

[harleygal726]

Thanks for the information 

[cristiana]

Just to say I am the same as trents, and another friend of mine, too, diagnosed roughly at the same time as me.  In the old days we felt unwell, now our reactions are very much worse if we are glutened. 

[Mary D63]

Thanks to all of you who replied.  All very helpful information:)

[GardeningForHealth]

About a year ago I went to a Mexican chain restaurant. I told them that I was Celiac. They said "we have a gluten-free tortilla." I said, are you sure its gluten-free? They said their supplier has labeled it gluten-free.

Well, they brought the meal to me, and the tortilla was light tan/brownish color, and it looked just like whole wheat to me. 15+ years ago I used to bake bread and I am very familiar with whole wheat bread products. I then tasted it, and I said, this has the exact same taste and texture as whole wheat, are you sure its gluten-free??? And they said yes, so I ate the whole meal.

Two hours later I get the painful cramps in my stomach and then I'm puking absolutely everything up, even after all my stomach contents are gone. Puking for 5 hours or so, then passing out from exhaustion. My body treated it like it was food poisoning.

Needless to say, it was a whole wheat tortilla, and either the restaurant or their supplier or both need to re-examine how they conduct their businesses.

[cristiana]

I'm so sorry you had this experience @GardeningForHealth.   I've had this happen to me.  Responding so violently to gluten as that (I'm the same)  puts you off eating out.  When we go on holiday this year I've decided I just can't risk being that ill so will be on a permanent gluten-free picnic, buying things which are certified gluten-free in stores and eating veg, chicken, salad and rice at our timeshare.  It's such a pity as eating is a great part of a holiday for me, but I'd rather be well.  When I had a major glutening experience a few years back I also got terrible ectopics and felt really faint, chills, the lot - and thought I'd pass out.  I just don't want to do that when I'm not at home.  I didn't need to go to hospital, but I remember at the time it felt like I might!

I've decided to view my holiday as a kind of health farm experience and just eat simple foods, I need to lose weight so it will be a bonus if I return from holiday a few pounds lighter for a change!

 

 

[Mary D63]

I'm sorry to all of you for what you've experienced. Thank you for sharing your stories as this does help me feel more "normal" although still Celiac:(

[trents]

3 hours ago, GardeningForHealth said:

About a year ago I went to a Mexican chain restaurant. I told them that I was Celiac. They said "we have a gluten-free tortilla." I said, are you sure its gluten-free? They said their supplier has labeled it gluten-free.

Well, they brought the meal to me, and the tortilla was light tan/brownish color, and it looked just like whole wheat to me. 15+ years ago I used to bake bread and I am very familiar with whole wheat bread products. I then tasted it, and I said, this has the exact same taste and texture as whole wheat, are you sure its gluten-free??? And they said yes, so I ate the whole meal.

Two hours later I get the painful cramps in my stomach and then I'm puking absolutely everything up, even after all my stomach contents are gone. Puking for 5 hours or so, then passing out from exhaustion. My body treated it like it was food poisoning.

Needless to say, it was a whole wheat tortilla, and either the restaurant or their supplier or both need to re-examine how they conduct their businesses.

For that reason I never order anything in a Mexican eatery that is a wrap. I stick to corn taco shells, tortillas and chips.

[cristiana]

I never eat pasta or pizza out, in a busy restaurant it's too easy to be served the wrong portion, as I've found to my cost. 

[nonflourgirl]

Three weeks in and doing great. Bought gluten free muffins and immediately got sick. Read the ingredients and it lists oats. Which are gluten free unless it’s processed with wheat. Read read and don’t assume. It’s not worth getting sick. Still have not been to any restaurants. Too wary. Good luck. 

[trents]

2 hours ago, nonflourgirl said:

Three weeks in and doing great. Bought gluten free muffins and immediately got sick. Read the ingredients and it lists oats. Which are gluten free unless it’s processed with wheat. Read read and don’t assume. It’s not worth getting sick. Still have not been to any restaurants. Too wary. Good luck. 

About 10% of celiacs react to the oat protein avenin like they do gluten. Can you generally eat gluten free oats otherwise without getting a reaction?

[nonflourgirl]

Yes. I mix it with chia seed pudding and stone fruit and real maple syrup. 

[Mynx]

Many times, oats are groan next to fields of wheat. I've been told that can cross contaminate. Bob's Ted Mill processes all their gluten free items in a dedicated aged facility. I've had  Elias disease for 21 years. I've never had a problem with their products. If you e er have any doubts on any product, always call the company's customer service and ask questions. The first I question I ask is how long they have been there. If they are new, ask to withe speak to a supervisor, ask to speak to someone else or make sure they really researched it before giving their answer. You can also Google the item. Hope this helps!

On 6/13/2024 at 4:56 PM, Scott Adams said:

I can't speak for that brand specifically...there are many such products on the market, but I would only consider ones that contained AN-PEP enzymes, as there have been many studies done on AN-PEP which show that it can break down small amounts of gluten in the stomach, before it reaches your intestines. One of our sponsors here, GliadinX includes AN-PEP, and has links to the studies at:

https://www.gliadinx.com/publications 

Thanks Scott!!  I was wondering about that product. 

[trents]

38 minutes ago, Mynx said:

Many times, oats are groan next to fields of wheat. I've been told that can cross contaminate. Bob's Ted Mill processes all their gluten free items in a dedicated aged facility. I've had  Elias disease for 21 years. I've never had a problem with their products. If you e er have any doubts on any product, always call the company's customer service and ask questions. The first I question I ask is how long they have been there. If they are new, ask to withe speak to a supervisor, ask to speak to someone else or make sure they really researched it before giving their answer. You can also Google the item. Hope this helps!

Thanks Scott!!  I was wondering about that product. 

Did you mean Ileus disease? I couldn't find anything on Elias disease when I googled it.