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Get Endo Done Now?


jemms

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jemms Apprentice

Just diagnosed with Gluten Intolerance and possible Celiacs. I was told by my doctor to wait until I feel better to get the endo done. She said the risk for infection is high because I have had so many G.I. symptoms... my concern is that the endo wont show celiac's if I start eating gluten free now...isnt it best to get it done now rather than go off gluten, feel better then start eating gluten again?? Any thoughts on this would be appreciated. Thank you so much!!


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goodnews Apprentice

Just diagnosed with Gluten Intolerance and possible Celiacs. I was told by my doctor to wait until I feel better to get the endo done. She said the risk for infection is high because I have had so many G.I. symptoms... my concern is that the endo wont show celiac's if I start eating gluten free now...isnt it best to get it done now rather than go off gluten, feel better then start eating gluten again?? Any thoughts on this would be appreciated. Thank you so much!!

Interesting, I have never heard that before. I feel like crap and am getting one on Wednesday. Also my gallbladder is failing and have frequent gallbladder pain and they are going to probably schedule to have it taken it out after I do the Endoscopy. They actually wanted to do the endoscopy first. Yes, if you are going to get the endoscopy done and you are thinking celiac you definitely can't go gluten free yet! Doesn't the doctor get that you have GI symptoms and that is why you need the endoscopy? does the dr. feel it will resolve on it's own? Very strange.

Jaymie Jaymz Rookie

I agree. I would get it done now while you're still eating gluten. What's the point of going off of it and then back on?? Gluten challenges suck, and no one really knows for sure how long you should be on one in order to bring the damage back. Everyone's body is different, so all we can do is guess.

From reading here, I've seen people test positive after just one month, and then I saw someone who tested negative even after a six month challenge. Just seems like a crap shoot.

Anyway, hope you get some answers soon.

Cara in Boston Enthusiast

Do not go gluten free until you have the endoscopy done. Even a week can be enough to heal enough that your result could be a false negative. I would schedule it as soon as possible so you can go gluten free as soon as possible and start feeling better.

Cara

jemms Apprentice

thank you everyone!! I have decided to go ahead and get it done...May 18th is the day!

I think my doctor didnt understand why I needed that definitive answer that yes it is Celiac's...she kept saying well you are gluten intolerant so whether you have celiacs or not you still have to stay off the gluten. I need to know absolutely for sure if it is celiacs not only for me but for my children as well. I am adopted so the more medical info I can find out for myself will benefit my children in the end as well. I am going to start back on the gluten which in some sick way is exciting because I can have that croissant I have been craving :P . Thanks everyone for taking the time to respond.

goodnews Apprentice

thank you everyone!! I have decided to go ahead and get it done...May 18th is the day!

I think my doctor didnt understand why I needed that definitive answer that yes it is Celiac's...she kept saying well you are gluten intolerant so whether you have celiacs or not you still have to stay off the gluten. I need to know absolutely for sure if it is celiacs not only for me but for my children as well. I am adopted so the more medical info I can find out for myself will benefit my children in the end as well. I am going to start back on the gluten which in some sick way is exciting because I can have that croissant I have been craving :P . Thanks everyone for taking the time to respond.

Glad you got it scheduled...yes sometimes they just don't know. My dr. told me the other day that I could try the gluten free diet and see if I felt better. I explained to him that I wanted to wait til all the testing was done to make sure. I said to me there is a difference between going gluten free and not ever being able to cheat (having Celiac) and having to go gluten free for a while (or possibly permanently) because it just makes me feel better. So my endoscopy is in 2 days...tommorrow is the last day I can eat. So we ordered out white pizza with broccoli tonight. It was divine! I am definitely going to miss that. Of course I am certain I will be feeling pretty sick in a little bit, at least with the gallbladder. Keep us posted and enjoying the last hurrah eating gluten. : )

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    • trents
      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. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      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.
    • trents
      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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