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Can't eat oats - Celiac?

Monael

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Monael Apprentice
Monael
Posted

Hi there.  I figured out a few years ago that I can't eat wheat/gluten unless I want to suffer with pain and horrible D (didn't have a normal BM for years!).  I didn't do any research beforehand so I never was tested for Celiac because by the time I found out you had to keep eating gluten in order to test, I didn't think it was worth it and just kept eating gluten-free.  Since going gluten-free I have had periodic pain that I was told was related to my gallbladder.  So I just dealt with it because I didn't want surgery.  After a SEVERE what I thought was a gallbladder attack, I went to the doctor and after doing a HIDA scan, determined it was not my gallbladder.  After talking with him, he suspects celiac.  He said I only needed to eat gluten for 2 weeks in order to get tested.  What this horrible attack turned out to be is that I had found some gluten-free cheerios and went crazy and ate 2 big bowls of the stuff.  Now I know that these periodic "gallbladder attacks" must have been me getting accidentally glutened. Since then, I tried some certified gluten-free oats and yep, I get my typical glutened reaction. Can a person be gluten intolerant and still not be able to eat oats, or does that mean it is celiac?  I just dread eating gluten for 2 weeks, and I read several places that you really need to eat gluten for 12 weeks and then biopsy.  I don't think I can take that.  

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!

About 10% of celiacs do react for some reason to oats -- even certified gluten-free oats!  The oats in Cheerios are mechanically sorted after harvest.  Many celiacs have become sick from them.  You couldn't pay me to eat them!  

You did not say how often you ate those oats.  Maybe you have glutened yourself enough, along with two more weeks of gluten to get tested.  Honestly, only you can decide if you need the diagnosis.  It is handy to have since it's genetic and you may someday help someone else in your family.  My hubby went gluten-free 15 years ago.  There's no way he'll do a challenge.  He does say that I get way more support from family, friends and medical.  

I hope you figure it out!  Just don't eat those Cheerios (visit GlutenFreeWatchDog.com.  They are like Consumer Reports but just dedicated to gluten-free products)!  

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Irene Joanne Explorer
Irene Joanne
Posted

I had the same gallbladder pain for years! It has mostly gone away now. I've been gluten free for seven months. I was diagnosed 7 months ago and couldn't possibly do a challenge now if I needed to after being gluten free this long. I can't handle gluten free oats at all. 

I was glutened almost three weeks ago and I'm still sick from that. The gallbladder pain came back. 

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Monael Apprentice
Monael
  • Author
Posted

Thanks for replying :)  I was really just wondering if I can't eat oats, if that indicated it was definitely celiac or could it also be gluten intolerance.  I can live without the testing but I was just curious.  And is 2 weeks long enough on gluten to get an accurate test?

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cyclinglady Grand Master
cyclinglady
Posted

The only way to find out if you have celiac disease for sure is to get tested.  The blood test requires you to be consuming 1 to 2 slices of bread per day for a period of 8 to 12 weeks.  It's only 2 to 4 weeks if you are doing the endoscopy.  

You could be reacting to oats for many reasons.  Reacting to them is not a definite sign of having celiac disease.  I can eat certified gluten free oats (grown and harvested away from wheat, rye and barley) and do fine (the new Girl Scout gluten-free cookies contain gluten-free oats).

I would encourage you to research more:

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Monael Apprentice
Monael
  • Author
Posted

Thanks, cyclinglady.  I figured that, but thought I would ask just in case.  The test the doctor wants to do is a blood test, but he said I only had to eat a slice of bread a day for 2 weeks.  I guess I will pass on the test and just keep eating gluten and oat free.  Now that I know the pain I am experiencing is not my gallbladder, but a reaction to gluten/oats, it has helped me figure out that even small amounts will get me (like fries that are made in the same fryer as breaded items, boo hoo).

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cyclinglady Grand Master
cyclinglady
Posted

You have come this far.  Even though two weeks might NORMALLY not be enough for the celiac antibodies blood test, the fact that  you have been possibly glutened via cross contamination (reference Cheerios) you might get a positive on your antibodies test.

I can only base this on personal experience.  I was glutened last July through cross contamination.  I do not even know what the actual source was (two possible products that only I use and not my husband).  My symptoms were dramatically different compared to when I was diagnosed (vomiting, bloating, ab pain, rashes (not DH), hives, itching, etc).  Six weeks later, my GI tested my antibodies and they were sky high!  Six weeks later!  I confess I might have had another gluten exposure in one restaurant as I was on vacation.  All the other food I prepared myself.   It took me three months to heal and another three to regain weight.

So, by sharing this, I think you might have a chance of actually seeing if your antibodies are elevated.  

Again, you've been gluten-free for years, but a diagnosis might just not help you, but others in your family.  

Just more....more...to think about!  :lol:

 

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      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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