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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
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      By trents · Posted

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      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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