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A new gastroentologist

janew6

By janew6
in Coping with Celiac Disease

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janew6 Newbie
janew6
Posted

I have no choice but to go to the ER when I accidentally get glutened. I have uncontrollable vomiting, diarrhea, horrible cramping. We moved cities recently. I saw a new gastro yesterday. She told me that celiac could not cause that severe a reaction. Contrary to what my other gastro told me. 

This doctor told me to take Benadryl when I feel a reaction starting because she believes I have an allergy to something else. Then she referred me to an allergist and basically said I don't need to come back. 

She was going to order a blood test for celiac disease until I told her it had been done and she looked at my records then. It showed higher levels than she liked so she told me that my husband also must go gluten free. 

She spent 15 minutes talking about genetic screening for cancer because it's prevalent in my family. But when I asked her if I should be tested she said no because I don't have cancer. 

Im completely confused by this woman. She swears celiac patients never have reactions severe enough to send them to the ER. I could use feedback please. I was diagnosed 2 years ago. 

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cyclinglady Grand Master
cyclinglady
Posted

Get a new GI.  

At my dx, anemia was really my only issue.  Got glutened last summer.  I was vomiting and had all the ab symptoms.  Got hives, rashes, itching, passing out......too.    I just toughed it out as I was on vacation.  Four weeks later, my GI tested my celiac antibodies and they were sky high.  Off the charts!  I was "barely positive" when i was diagnosed.  You should get your antibodies run annually as part of normal celiac follow-up care (per celiac centers and GI Associations).   (I assume that you meant that you had celiac disease testing done only when you were newly diagnosed.)

Oh, call and ask for the lab order before you dump this doctor.  Get a complete panel.  

http://www.uchospitals.edu/pdf/uch_014189.pdf

frieze Community Regular
frieze
Posted

yeah, use the (idiot) doc before you dump her, then find one with active brain cells.

janew6 Newbie
janew6
Posted
  • Author
On 12/1/2016 at 10:37 AM, cyclinglady said:

Get a new GI.  

At my dx, anemia was really my only issue.  Got glutened last summer.  I was vomiting and had all the ab symptoms.  Got hives, rashes, itching, passing out......too.    I just toughed it out as I was on vacation.  Four weeks later, my GI tested my celiac antibodies and they were sky high.  Off the charts!  I was "barely positive" when i was diagnosed.  You should get your antibodies run annually as part of normal celiac follow-up care (per celiac centers and GI Associations).   (I assume that you meant that you had celiac disease testing done only when you were newly diagnosed.)

Oh, call and ask for the lab order before you dump this doctor.  Get a complete panel.  

http://www.uchospitals.edu/pdf/uch_014189.pdf

Thank you. I did have the antibodies test before I saw her and they were high. I appreciate your input 

janew6 Newbie
janew6
Posted
  • Author
7 hours ago, frieze said:

yeah, use the (idiot) doc before you dump her, then find one with active brain cells.

Haha. Good call. I already have an appointment with a new one. 

cyclinglady Grand Master
cyclinglady
Posted

Okay, so now you know that a gluten exposure (aka "glutening") can knock you for a loop.  Celiac disease does NOT produce consistent  symptoms.  Each glutening can vary.  

You still need a new Gi, but the advice that your hubby go gluten free might be good.  Once I went gluten-free after my diagnosis, my hubby's health improved (he had been gluten-free for 13 years).  I was good about cross contamination and reading labels, but i really went overboard because it now affected me!  Probably stopped him from taking too many risks like eating out often and not grilling restaurant staff.  Anyway, your hubby can get his gluten fix outside of the house and he can brush his teeth before kissing you.  My kid eats all her gluten at school and out of the house.  Because, we need a safe place to relax!  

  • 1 year later...
StephInCali Newbie
StephInCali
Posted

That gastrointestinal doc doesn't know what they are talking about. Celiacs can have very severe reactions to gluten contamination.

I have been diagnosed with Celiac for over 10 years now. I'm very careful to avoid all gluten. 

When I do get glutened accidentally, my reaction is pretty predictable. About 2 hours after eating gluten-contaminated food, I get a little nausea. It starts out mild, then quickly progresses within an hour to a full-blown reaction. Uncontrollable vomiting, severe diarrhea and a LOT of pain.  I haven't gone to the ER yet, but since each exposture seems to cause a worse reaction, I will probably go to the ER next time. This last one was really bad.

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Gemini Experienced
Gemini
Posted
On 12/2/2016 at 4:29 AM, frieze said:

yeah, use the (idiot) doc before you dump her, then find one with active brain cells.

:lol: :lol: :lol:

It never fails that you make me laugh out loud, frieze!  We share the same opinions about MD's.  I know the poster's problem is not a laughing matter but your answer is.

jane.......you most certainly can have severe gastro reactions to gluten.  I did for a long time until I healed.  I had a few doozies myself where I vomited so long and so hard, I thought I had food poisoning.  A few times the cramping was so bad I couldn't get up off the floor.  That is all behind me now.  I have been diagnosed and gluten-free for 13 years and on the extremely rare occasion when I take a hit, my gut hardly responds.  I get more neuro reactions now.  You are not crazy and the doctor is wrong!

Good luck with the new doc!

Yes, I know this is an older thread but I love frieze's answers....

frieze Community Regular
frieze
Posted

why, thank you, ma'am.   

Gemini Experienced
Gemini
Posted
39 minutes ago, frieze said:

why, thank you, ma'am.   

:)

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