Drastic Symptoms: Vomiting And Hypotension Gluten Allergy?

[Auldtwa]

I have what my doctor calls kinda-sorta celiac disease. I have the antibodies, certain symptoms ( malabsorption of iron mainly) and visually inflamed gut, but after three endoscopies the biopsies are negative or inconclusive. I've been gluten free for over two years, quite rigorously. No more symptoms though I need a lot of iron supplements to keep my ferritin levels at the low end of normal. My remaining gut problems are probably due to Metformin and nicely controlled with Imodium. Better that than insulin.

Two days ago I was waiting at the hospital to give my daughter a ride home and ate a donut the server said was gluten free but which I later confirmed was not even close. About two hours later I got violently sick: projectile vomiting, diarrhea, cold sweats, almost passing out--the only reason I didn't faint was that I was standing next to a nurse who grabbed my head down. I couldn't even transfer from chair to wheelchair. They had to hoist me onto a gurney. So I found myself in the ER with abysmally low blood pressure. Normally it is on the high side. And they made me stay another 24 hours in the hospital though I felt fine after IV fluids and anti nausea drugs.

No one would listen to me when I tried to say I thought this was from gluten. I had the same reaction a few months ago, though I didn't then go to the ER, when I had some Thai food that was supposedly gluten free but I think was loaded with regular soy sauce. At that time I thought maybe it was food poisoning but the symptoms were exactly the same: violent vomiting, cold sweat, near faint. I know with celiac vomiting, particularly just after being glutened, is rare, but given my lack of clear biopsy results, I'm looking for reputable information about possible Non-celiac severe gluten allergies or celiac-with-vomiting studies. (all Google tells me is that the whole subject is controversial.) This might explain the inflammation and malabsorption and scary reaction to massive glutening . No one at my quite large medical clinic knows much about gluten beyond the basics and no one wants to think about it. I need ammo for getting a clear diagnosis of SOMETHING so that if this ever happens again the doctors will just send me home after fluids rather than keep me in the hospital to run a zillion tests on the hypotension, all of which were negative.

At least at 70 I now know that my heart, liver, and kidney are fine. And I got a discount blood pressure cuff out of it. And I'll be vastly suspicious of anyone telling me their goodies are gluten free without some certification in evidence.

[cyclinglady]

What? It clearly sounds like you have celiac disease with positive antibodies and proving with a gluten-free diet. At a minimum, a severe intolerance to gluten. Everyone has different reactions to glutenings or symptom presentations. Doctors are still relying on "classic" symptoms.

Have you had your gallbladder checked? I am not talking about looking for stones on an ultrasound, but a HIDA scan. You ate the donut (gluten) but it was full of fat and your gallbladder revolted. Your severe symptoms sound like mine before my gallbladder was removed. I used to end up in ER because I passed out, went into shock, vomited, abdominal pain, diarrhea, etc. all from a non-functioning gallbladder damaged most likely from undiagnosed celiac disease. My gallbladder would work on and off -- tricky to diagnose. Just something to think about.

I was diagnosed with celiac disease based on iron deficiency. No other big symptoms. It came as a surprise. However, I have been gluten-free for 1-1/2 years and I stopped iron supplementation after a year. My ferritin levels are around 55. I would be concerned that you still are not absorbing and storing iron. That should be researched. Maybe the met is inferring with the iron. I do not know.

I am diabetic but am maintaining with a low carb high fat diet which has vastly improved my lipid panel (bonus). I do not worry about lows since I am not taking met, but will happily take it when my diet not can work alone. I basically eat to my meter avoiding spikes over 140 as research indicates anything above causes the usual diabetic complications. My diet will allow me to better manage my insulin levels too if and when I need to be on insulin. Because it is all about managing, isn't it?

Take care!

[Auldtwa]

What? It clearly sounds like you have celiac disease with positive antibodies and proving with a gluten-free diet. At a minimum, a severe intolerance to gluten. Everyone has different reactions to glutenings or symptom presentations. Doctors are still relying on "classic" symptoms.

Have you had your gallbladder checked? I am not talking about looking for stones on an ultrasound, but a HIDA scan. You ate the donut (gluten) but it was full of fat and your gallbladder revolted. Your severe symptoms sound like mine before my gallbladder was removed. I used to end up in ER because I passed out, went into shock, vomited, abdominal pain, diarrhea, etc. all from a non-functioning gallbladder damaged most likely from undiagnosed celiac disease. My gallbladder would work on and off -- tricky to diagnose. Just something to think about.

I was diagnosed with celiac disease based on iron deficiency. No other big symptoms. It came as a surprise. However, I have been gluten-free for 1-1/2 years and I stopped iron supplementation after a year. My ferritin levels are around 55. I would be concerned that you still are not absorbing and storing iron. That should be researched. Maybe the met is inferring with the iron. I do not know.

I am diabetic but am maintaining with a low carb high fat diet which has vastly improved my lipid panel (bonus). I do not worry about lows since I am not taking met, but will happily take it when my diet not can work alone. I basically eat to my meter avoiding spikes over 140 as research indicates anything above causes the usual diabetic complications. My diet will allow me to better manage my insulin levels too if and when I need to be on insulin. Because it is all about managing, isn't it?

Take care!

Thanks, but my gall bladder went to the great medical dump in the sky about 40 years ago   I do think that there is more to a gluten problem than is known in  your biopsies, but try to convince a doctor of this?  That's what I'm looking to do.

[cap6]

I don't understand "kinda sorta" celiac, however if gluten makes you sick then you don't eat it, right?  That would be enough of a diagnosis for me!

If I am glutened it results in severe vomiting, diarrhea (followed by days of constipation)   and passing out so those symptoms are "normal". Although is anything normal when it comes to Celiac?  Seems like we all react somewhat differently.

Low iron is not uncommon.  In my 60's and take 3 iron supps a day which my dr says I will probably always have to take.  I qam tested every 6 months just to be sure.  I follow a Paleo diet so get all the good stuff I should but sometimes our body just doesn't co-operate! 

[nvsmom]

Thanks, but my gall bladder went to the great medical dump in the sky about 40 years ago   I do think that there is more to a gluten problem than is known in  your biopsies, but try to convince a doctor of this?  That's what I'm looking to do.

Dr Fasano, one of the leading celiac disease researchers has come up with this, widely accepted, criteria for diagnosing celiac disease.  You need to meet 4 out of 5 of the criteria to be "officially" diagnosed with celiac disease:

1.  typical symptoms of celiac disease
2. positivity of serum celiac disease immunoglobulin, A class autoantibodies at high titer (EMA IgA is the titre)
3. human leukocyte antigen (HLA)-DQ2 or DQ8 genotypes
4. celiac enteropathy at the small bowel biopsy
5. (positive) response to the gluten-free diet

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If you have a positive genetic test, you will have met 4 of the 5 criteria.... But it doesn't really matter as long as you eat properly and can advocate for yourself so you are less likely to get glutened.  I myself only met 3 of the 5 criteria because I skipped the biopsy and genetic testing was not offered.  Two of my children only met criteria #1 and 2; they had a negative tTG IgA and therefore the doctor would not do the biopsy or genetic tests.  It would be impossible for them to be diagnosed because of that, but we are all gluten-free and feeling better and that's all that matters... Those doctors can believe whatever they want!  LOL  I tend to tell doctors, and anyone else who asks, that we all have celiac disease and then we are taken more seriously... besides, I believe it is true.  Very few organizations check into medical records to confirm it so it has been a non-issue so far.

 

I hope you feel better soon!