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

Tests Say No, Symptoms Say Yes. (Also, Dermographia)


kazm

Recommended Posts

kazm Newbie

Nearly 6 months ago I tried to improve my diet. Part of this included eating oatmeal for breakfast, sandwiches on wheat, etc. Shortly after I began suffering from excess gas, to the point of pain doubling me over, and alternating C and D. I also couldn't enjoy a car ride without multiple false alarm D stops. I tried self medicating with fiber and probiotics, but I eventually ended up in Urgent Care because of the severe stabbing gas pains. They ended up doing tests, nothing showed out of the ordinary, including an IBS panel. They referred me to a gastroenterologist, who ended up telling me to seek counseling, it's all in my head.

I started to suspect Celiac Disease, so I stopped the oatmeal for a while. After a while things settled down with my stomach so in the spirit of health I gave oatmeal another try. When things got bad again I asked my doctor for a referral to another gastroenterologist. He told me I have IBS, but a Celiac Panel showed negative. Told me to change my Probiotic, and see ya in 6 months.

Being told the test was negative, I tried grains again, and of course it didn't go well. Despite the test being negative, I know to avoid oatmeal and rice. My stomach problems are manageable now.

The other issue now though that sent me here is that now I have what appears to be Demohraphia. Which I've read is strongly linked to celiac. I originally thought the "hives" were an allergic reaction to a new medicine but after stopping the medication and waiting a month, my doctor referred me to a dermatologist since she said what I've described is not how hives behave and they had lasted too long. I have to wait 2weeks to make my appt since my schedule is packed currently.

If I don't have celiac, but can't eat rice and oatmeal, what could it be? Is the apparent dermographia related? I need your experience.


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



Celiac.com Sponsor (A8-M):



Sigmund2 Newbie

I know i am jumping in late but have u looked up the common ingredient in oatmeal and rice?

Sigmund2 Newbie

Nearly 6 months ago I tried to improve my diet. Part of this included eating oatmeal for breakfast, sandwiches on wheat, etc. Shortly after I began suffering from excess gas, to the point of pain doubling me over, and alternating C and D. I also couldn't enjoy a car ride without multiple false alarm D stops. I tried self medicating with fiber and probiotics, but I eventually ended up in Urgent Care because of the severe stabbing gas pains. They ended up doing tests, nothing showed out of the ordinary, including an IBS panel. They referred me to a gastroenterologist, who ended up telling me to seek counseling, it's all in my head.I started to suspect Celiac Disease, so I stopped the oatmeal for a while. After a while things settled down with my stomach so in the spirit of health I gave oatmeal another try. When things got bad again I asked my doctor for a referral to another gastroenterologist. He told me I have IBS, but a Celiac Panel showed negative. Told me to change my Probiotic, and see ya in 6 months.Being told the test was negative, I tried grains again, and of course it didn't go well. Despite the test being negative, I know to avoid oatmeal and rice. My stomach problems are manageable now.The other issue now though that sent me here is that now I have what appears to be Demohraphia. Which I've read is strongly linked to celiac. I originally thought the "hives" were an allergic reaction to a new medicine but after stopping the medication and waiting a month, my doctor referred me to a dermatologist since she said what I've described is not how hives behave and they had lasted too long. I have to wait 2weeks to make my appt since my schedule is packed currently.If I don't have celiac, but can't eat rice and oatmeal, what could it be? Is the apparent dermographia related? I need your experience.

I know that oats contain a protein similar to gluten so perhaaps that would explain the similar symptoms

Archived

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

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

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lovinlifeafter60
    Newest Member
    lovinlifeafter60
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
×
×
  • 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.