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Just Got Back From The Gi Dr. This Is What He Thinks.......

answerseeker

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answerseeker Enthusiast
answerseeker
Posted

If you read my post the other day you will see the long struggle and long list of symptoms I've had. Had an appointment today with the same GI that did my endoscopy. He said that just because my bloodwork and biopsy were negative for celaic it doesn't mean that I don't have it. Could be not enough damaged done yet, especially since this started only about a month ago. Wow, perhaps I found a knowledgable doc huh? Even the foot cramps I get points to it because I have low calcium in my blood work. Also I'm still loosing weight. Today I'm down to 105. I have a ultrasound to rule out gallstones but he is really leaning towards celiac or non celaic gluten intolerance (I was shocked he actually knew what this was) he said even if it is IBS gluten still upsets that condition so still same treatment.

 

So he says gluten free diet trial for a month, if I improve then lifelong gluten free diet. If I don't then go back to see him.

 

on a sidenote, I thought oatmeal was naturally gluten free but I had the worst reaction to it the other day. I'm still not fully over it.

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kareng Grand Master
kareng
Posted

If you read my post the other day you will see the long struggle and long list of symptoms I've had. Had an appointment today with the same GI that did my endoscopy. He said that just because my bloodwork and biopsy were negative for celaic it doesn't mean that I don't have it. Could be not enough damaged done yet, especially since this started only about a month ago. Wow, perhaps I found a knowledgable doc huh? Even the foot cramps I get points to it because I have low calcium in my blood work. Also I'm still loosing weight. Today I'm down to 105. I have a ultrasound to rule out gallstones but he is really leaning towards celiac or non celaic gluten intolerance (I was shocked he actually knew what this was) he said even if it is IBS gluten still upsets that condition so still same treatment.

 

So he says gluten free diet trial for a month, if I improve then lifelong gluten free diet. If I don't then go back to see him.

 

on a sidenote, I thought oatmeal was naturally gluten free but I had the worst reaction to it the other day. I'm still not fully over it.

 

 

It has to be gluten-free oatmeal.  It will say it on the package.  Oats use the same fields, farm equipment, silos, etc as wheat.  So unless the oats are certified gluten-free, don't eat it.

notme Experienced
notme
Posted

good for you for finding a knowledgeable doc!  i was nearly dead from malnutrition when the light finally went off in my (family) doc's head.  3 years later and i feel like i'm still healing my guts, so good thing it has been caught before alot of damage has been done :)  

 

i still can't do oats, it seems.  tried them twice and have had no luck  :(  maybe try them again in......   january.....  so, some do well with it (I SURE MISS OATMEAL!) some don't.

 

good luck!  

dilettantesteph Collaborator
dilettantesteph
Posted

Something like 10% of celiacs react to the avenin in oats similarly to how they react to the gluten in wheat, barley and rye.  If you had a really bad reaction, you may be in this group.  If you try again, try just a little bit of gluten-free oats until you know that you can tolerate them.  I am in the oat sensitive group myself and I wish that someone had given me that advice.

answerseeker Enthusiast
answerseeker
Posted
  • Author

Thanks. For now it's gluten free chexs or eggs for breakfast!

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    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

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    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

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    • trents
      Oats gluten free?

      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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