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Having Endoscopy In A Few Weeks
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Hello. I posted my intro and story already but to recap, I was diagnosed with celiac a couple of weeks ago after presumably having it since childhood (I am 32). My doctor said I had it based on anti gliadin and anti endomysial results (he said they were really elevated but I didn't see the results, so I have no idea what he gauges as 'really elevated'). He wants me to have an endoscopy to see if I have damage, take some biopsies, and evaluate my espophogus because of some reflux issues i have. I have been gluten free for at least four months prior to my diagnosis, but since the diagnosis, we have been super strict and removed it completely from our home and no longer eat out at all. My question is, do I need to go back on gluten for the biopsy? My doctor told me he wanted me on a whole foods diet and no eating out, as well as eliminate all personal care products with gluten (I possibly have DH on the back of my scalp), so without intentionally eating gluten, it's unlikely I will get any in my system. He didn't say anything about needing it in my system prior to the endoscopy. Any thoughts??

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It sounds like you are already diagnosed.

And it sounds like your Dr. wants you to be eating strictly gluten free.

Both of these are good things.

Maybe he is just doing the endoscopy to be certain he isn't missing any cancer related to Celiac and to evaluate the level of damage to your intestine. These are good things.

You are not trying to produce damage in order to get diagnosed. It sounds like this is just to evaluate the damage that has already been done and to see if healing is taking place for you on the gluten free diet.

I wouldn't recommend eating gluten prior to this test unless your Dr. specifically tells you to. You are already diagnosed.

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It sounds like you are already diagnosed.

And it sounds like your Dr. wants you to be eating strictly gluten free.

Both of these are good things.

Maybe he is just doing the endoscopy to be certain he isn't missing any cancer related to Celiac and to evaluate the level of damage to your intestine. These are good things.

You are not trying to produce damage in order to get diagnosed. It sounds like this is just to evaluate the damage that has already been done and to see if healing is taking place for you on the gluten free diet.

I wouldn't recommend eating gluten prior to this test unless your Dr. specifically tells you to. You are already diagnosed.

I agree with this. You may want to talk to your doctor to be sure he considers you diagnosed. If he does then a challenge is not needed IMHO.

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Yup & yup.

My guess would be that he'd want to look for Barrett's Esophagus (reflux-related), hiatal(sp?) hernia, etc. W/ Barrett's, my Dr wanted a baseline for future comparison.

I'm not sure what it means, but he was particularly interested in some type of "goblet cells" being in unexpected places. Who knows, might be very useful info in years to come.

Sounds like you have a good Dr who wants to be thorough.

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I agree with everyone's thoughts. This doctor is doing all the right things by you. You already have a DX, he is being thorough, and if he does not want you resuming gluten, then he knows what he is doing. This makes it easier on you, avoiding a prolonged gluten challenge. IMHO

I am so glad you have someone so wise taking care of you.

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Thank you! I was kind of thinking along the lines of the responses given. I did not want to resume eating gluten and my doctor did not suggest this but I was curious as to why he would proceed with a scope despite him telling me that he is absolutely certain I have celiac (he did say I was one of the worst cases he has seen, though I am not sure what his experience is or what he meant by that, especially since I am a new patient to his office). I am going to keep up with the gluten free in the meantime and when I do have the scope, I will share what the gastroenterologist finds. Again, thank you!!! I am so grateful for this forum :-)

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Would you review this on Find Me Gluten free?  You can  use the app or just go to it on line. If the restaurant isn't listed, there is a way to suggest it.  I have done that and it works.  Many of us look at that site/ app
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