Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

It Was Frightening Last Night...


lorka150

Recommended Posts

lorka150 Collaborator

<_<

So last night for dinner, I made something new for the first time since being gluten free (for about one month). I bought one of those cedar planks and grilled salmon on the bbq. Everything I had on the salmon and side dishes were similar to what I always eat. The only thing new was the plank.

Well, maybe the plank was somehow contaminated.

Three minutes into my meal, I got that familiar brain fog. I couldn't see, got really dizzy, and stomach cramps. Ten minutes later, on the toilet. Stomach pain and dizzyness lasted for the rest of the night.

Then the insomnia hit. At about 3am, there was a party in my stomach - it was so loud it was ALMOST funny. But irritating. You see, I wasn't invited to this party, I was an irritated, tired outsider who wanted to get to bed!

5am, I lay in bed. My chest started to hurt. I started to drift off to sleep and my breathing got really shallow. I had to concentrate to breathe. I tried to take my pulse, but I couldn't concentrate to get through a minute. When I finally did, my heart rate was 38.

About an hour later, I was in intense pain. I could hardly breathe or move. I wanted to get someone, but it just hurt too much. The pain ran from my chest and my whole stomach.

I don't remember how long this lasted. Somewhere at around 6am I drifted off to sleep til around 7.

I'm awake now (was here and there from about 7-8), but man... I'm glad THAT is over. Has anyone ever had anything like that? The longer you are gluten free, does the 'glutening' get worse?

Anyone else think it was the plank? (I don't know what else it could have been?)

Also, at around 8:30 I ran back to the bathroom with a huge poop, and right now, I feel like if I open my mouth (even to say good morning), I would throw up. The only thing I can fathom consuming is a milkshake, which I think I am just craving for some reason becasue I don't eat dairy and haven't had one for about 5 years :lol:

Any ideas?

I'm glad it's over.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Carriefaith Enthusiast

Sorry you had to go through that :(

Has anyone ever had anything like that? The longer you are gluten free, does the 'glutening' get worse?
I have had gluten reactions similar to what you explained. I also get dizzy, brain fog, insomnia (sometimes), nausea, diarrhea, mild-severe stomach pain (sometimes to the point where I cannot move because it hurts so bad), and I feel like I have the flu. I have never had any real problems with breathing but I can get intense heart palpitations. You may actually have a wheat allergy in addition to celiac, which may cause the breathing problems.

I think gluten reations do get worse after being gluten free, at least for me they do. I actually got a few reactions that I didn't have before going gluten-free. Like chicken pox-like bumps on the skin, heart palpitations, and intense stomach pain.

Anyone else think it was the plank? (I don't know what else it could have been?)
If the plank was just cedar, than it is unlikely. But really anything you ate or anything that touched your food could have been contaminated. I have been getting mysterious gluten contaminations off and on for about two months now. I have narrowed down two possibles sources; contaminated gluten-free maple leaf hot dogs, and possible cross contamination at a place that cooks gluten-free.
tarnalberry Community Regular

Yep, that reaction sounds like mine, though more severe. Brain fog, noisy stomach, pain in the abdomen are all glutening signs for me. I hope it passes quickly for you.

Rachel--24 Collaborator

I feel bad after I eat salmon that has color added. Its like poison to me.

Guest nini

oh yes that sounds exactly like my worst gluten reactions... terribly frightening.

Was the salmon fresh or frozen? Some brands of frozen salmon or fish in general, will dust them with flour before wrapping them...

doubt seriously it was the plank... had the grill been used for gluten stuff before and maybe not cleaned thoroughly enough?

I'm so sorry you feel bad...hope you feel better soon.

JoeB Apprentice

This is pretty timely from my perspective. Prior to being diagnosed in April, I used to get sick every time we cooked on the grill. Since being diagnosed, we've been cooking my food on a separate teflon tray on the grill. That stopped me from getting sick, but it was getting complicated trying to cook food containing gluten at the same time as gluten-free.

Yesterday, I put a wire brush on my electric drill and cleaned every bit of gunk off the grates. After that, I used brillo. I declared the grill "gluten-free" and so far after two meals, I haven't had a problem.

Don't relay on just scraping the grill and burning off the residue. It doesn't work.

mandigirl1 Enthusiast
I feel bad after I eat salmon that has color added. Its like poison to me.

<{POST_SNAPBACK}>

How so??????


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

There is something toxic about farm-raised salmon with color added. I haven't done any research on it but I work in a grocery store and I know by law they have to put those little "color added" stickers on the package now. I kept buying salmon and everytime I ate it I felt worse...I always felt bad anyway so it took awhile to figure out the salmon wasnt helping. Somebody recently mentioned to me about the "dangers" of eating farm-raised salmon. That was enough for me....I haven't eaten it since. Maybe someone else is more up to date on the subject.

ianm Apprentice

Food colorings can produce reactions in some people. I used to have a neighbor that would get a really bad rash if it had a certain type of red food dye in it. I don't remember what it was exactly but it was used mostly in candy. You are probably reacting to the dye put into farm raised fish.

Guest BERNESES

Yikes! That sounds like my night last night. Ugh! I don't know about the salmon or the plank, although thyose are certainly possibilities, but when I grill, I grill ALL my stuff on tinfoil. It's not the same but it has kept me safe so far.

Carriefaith Enthusiast
but when I grill, I grill ALL my stuff on tinfoil.
same here, until I get my very own BBQ ;)
pixiegirl Enthusiast

In my opinion there is something toxic about all farm raised salmon, just just the coloring. I only eat wild salmon, yes its hugely expensive, but I eat way smaller amounts.

Susan

nettiebeads Apprentice
Food colorings can produce reactions in some people. I used to have a neighbor that would get a really bad rash if it had a certain type of red food dye in it. I don't remember what it was exactly but it was used mostly in candy. You are probably reacting to the dye put into farm raised fish.

<{POST_SNAPBACK}>

When I was a kid my mom used to buy IGA hot dogs which I loved, but I would get severe migraines after eating them. I figured out it was the red dye that was used.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to MoniqueCham's topic in Related Issues & Disorders
      4

      Celiac Disease, Lymphocytic colitis and Bowel rupture

    2. - dsfraley posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    3. - MoniqueCham replied to MoniqueCham's topic in Related Issues & Disorders
      4

      Celiac Disease, Lymphocytic colitis and Bowel rupture

    4. - Scott Adams replied to HelenH's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Malt vinegar

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,552
    • Most Online (within 30 mins)
      7,748

    dsfraley
    Newest Member
    dsfraley
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @MoniqueCham, What a challenging journey you've had!  Like you, I studied nutrition, but I earned a degree in Microbiology because I wanted to understand what essential vitamins and minerals were doing inside our bodies.   I've come across some information that may be of interest to you.  I'll post links below.  On my journey, I suffered from malnutrition due to the malabsorption of Celiac disease.  I regained my health by supplementing with essential vitamins, especially Thiamine B1.  Thiamine is needed by every cell, so a low level of thiamine can cause many problems over time.  I was put on some medications that aggravated my thiamine deficiency.  Many medications can cause interactions with vitamins resulting in deficiencies. Methotrexate causes folate deficiency, but can also cause thiamine deficiency because folate and thiamine share some of the same cellular transporters.   Notes on Folate Carriers, Anti-Folate Medications, and Thiamine Deficiency https://hormonesmatter.com/notes-on-folate-carriers-anti-folate-medications-and-thiamine-deficiency/ Thiamine deficiency can affect the health of the digestive tract.  Thiamine helps regulate the intestinal microbiome, and keeps SIBO in check.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Thiamine deficiency aggravates experimental colitis in mice by promoting glycolytic reprogramming in macrophages https://pubmed.ncbi.nlm.nih.gov/39890689/ Other organs can be affected by thiamine insufficiency.  The thyroid, gallbladder, liver and pancreas can be affected by low thiamine. High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition https://pmc.ncbi.nlm.nih.gov/articles/PMC7988776/ Thankfully, I found that Thiamine in the form Benfotiamine can improve gastrointestinal dysfunction, as well improve liver function, and thyroid and pancreas health.   Benfotiamine can improve harm done by Methotrexate... Protective effect of benfotiamine on methotrexate induced gastric damage in rats https://pubmed.ncbi.nlm.nih.gov/33325753/ I was deficient in other vitamins.  I had skin issues that improved with niacin.  Perhaps niacin can help your skin problem if it comes back.   Response of generalized granuloma annulare to high-dose niacinamide https://pubmed.ncbi.nlm.nih.gov/6225398/ I'm very curious as to what you did to correct your nutritional deficiencies caused by refractory Celiac disease.   Refractory Celiac Disease: What the Gastroenterologist Should Know https://pmc.ncbi.nlm.nih.gov/articles/PMC11477276/ Tests for Serum Transglutaminase and Endomysial Antibodies Do Not Detect Most Patients With Celiac Disease and Persistent Villous Atrophy on Gluten-free Diets: a Meta-analysis https://pubmed.ncbi.nlm.nih.gov/28545781/ Hope this is helpful!
    • dsfraley
      Hello all, I am writing here in hopes of hearing from the community as to whether the issues my son is facing are relatively common for individuals suffering from Celiac Disease. He is 9 years old, has the HLA2 gene, tested high for the gliadin IgG antibody (not the primary one, but still on Celiac panel), and biopsy of the duodenum came back as Marsh 3A classification. He has been dealing with severe nausea (no diarrhea/vomiting), muscle achiness, and flu-like malaise for over 2 months (and he has not been to school during this time -- he has been truly bed or couch-ridden, and to the extent that he can watch a show but does not want to read an easy book or play video games... which he loves). He had a very low-grade rolling fever of about 100.0 that the doctors wrote off because it was very low, occasional, and would only last a couple of hours at a time. Before the onset of this, he struggled with severe weekly migraines that sometimes led to vomiting, or at least not functioning until after sleeping it off (which we thought was associated with too much screen time in school). In any case, given those lab results above, he was diagnosed with Celiac Disease a few weeks back. He has been on a gluten free diet for 3 weeks now. When I say a gluten-free diet, I mean: we have sterilized the house as much as possible (e.g., throwing away everything from the kitchen and replacing unless it was stainless steel, and washing that thoroughly, eliminated all gluten-containing foods from the house except for a few pre-packaged snacks for our other child that she can eat outside of the house such as at school, etc.), we have only given him foods that are certified gluten free unless it was something like meat (not seasoned), have not given him oats (even gluten free marked ones) to be safe, we have purchased new products such as shampoo and toothpaste, etc. He does not have any food not prepared in our house. In other words, if there is cross-contamination, it must be at exceptionally low levels. Despite this, he: continues to have off and on bloating and nausea, continues to have flu-like malaise (though he hasn't had the occasional low-grade fevers for the last 2 weeks, struggles greatly to get to sleep and sometimes wakes up miserable in the middle of the night, cries frequently and constantly expresses how much he doesn't feel good, most often now describes a general feeling of "ickiness" that we cannot pinpoint. The gastro has nothing more to say other than stick with it; the pediatrician says we should try a rheumotologist (if we want) or a psychologist. The former seems unnecessary, and the latter suggests to me a complete lack of understanding of just how miserable he is (and I am highly disappointed by the suggestion and now frustrated with the pediatrician). And so I am looking for support/thoughts:  For those of you who have Celiac Disease, or know those affected by it, does this sound accurate? Is there hope? Or do you think we are on track of needing to get more opinions? Thank you.  
    • MoniqueCham
      Thanks for your reply Scott! A long time ago I realized I didn’t fit neatly into uncomplicated celiac disease. Over the years I’ve been diagnosed and treated for SIBO, pancreatic insufficiency and diagnosed with Stage 2 liver fibrosis. I think all the complications occurred because of the refractory celiac disease. When I hit menopause my gut issues seemed to calm down and because I was stable I made the mistake of not following up with my gastroenterologist. Then other autoimmune problems flared and I tried the methotrexate. It worked like a charm for my skin condition… then my sigmoid colon ruptured. Strange but my autoimmune skin condition remains in remission after 6 months off the medication. We have a very long waiting list to get back into see my GI doctor… I was an emergency referral but am still waiting 6 months after the perforation. I need more surgery to fix a fistula that has formed and to reconnect my colon… I have a colostomy at present. I became a dietitian who specializes in bowel diseases but have never met anyone who’s had so many complications with celiac disease. I have a brother and son who also have been diagnosed. My mother had 4 autoimmune diseases including a vasculitis that eventually resulted in her death and it was my father who had the HLA DQ2 gene. Think I inherited some tendencies from each of them. Thanks again for your response… it feels a little lonely dealing with GI issues when I work so hard to remain gluten free.   
    • HelenH
    • Scott Adams
      Yes, unfortunately malt vinegar can definitely trigger a strong reaction in people with celiac disease. Malt vinegar is typically made from barley, which contains gluten, and unlike distilled white vinegar, it is not considered gluten-free. Even a small amount — especially if you’ve been strictly gluten-free for years — can cause a more intense reaction because your body is no longer accustomed to exposure. Many people report significant symptoms after accidental ingestion, including abdominal pain, diarrhea, fatigue, or flu-like feelings. You’re not alone in that experience. It may help to be especially cautious with salad dressings, chips, sauces, and restaurant foods, where malt vinegar is sometimes used.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.