Great Dr In Seattle

[Aleshia]

I found a really good gastroenterologist in seattle today. his name is Young Oh and he is at Minor and James. he specialises in celiac and was very friendly and knowledgable. will be doing the endoscopy inless than 2 weeks so I'm suppsed to eat gluten again. been gluten-free for about a month. I might see f he will redo my bloods too!

[WhimsiKay]

Will you be so kind as to report back how you feel when you start gluten again? I haven't had my endoscopy and won't for probably a year while my insurance kicks in, but I'm honest to god terrified of having to start gluten again -- I was so sick on it before.

Knowing what to expect from a source experiencing it would be great!

Good luck! =)

[cyberprof]

Aleshia, Thank you!

~Laura

[sickchick]

WONDERFUL! And good luck with your tests!

[ravenwoodglass]

Will you be so kind as to report back how you feel when you start gluten again? I haven't had my endoscopy and won't for probably a year while my insurance kicks in, but I'm honest to god terrified of having to start gluten again -- I was so sick on it before.

Knowing what to expect from a source experiencing it would be great!

Good luck! =)

If you have been gluten-free for a year before you can do the endo and you have had a good resolution of your problems a gluten challenge is not IMHO going to be a good idea. If you have a good dietary response and you heal they would have to literally make you extremely ill again with about 3 months of regular gluten injestion for any chance of the biopsies to come back postive. Dietary response is really the best diagnostic tool we have right now.

Usually the endo is done for diagnosis when folks have not yet been gluten-free or have only been gluten-free a short time. It is not unreasonable to challenge a month after suspecting you have it, but challenging a year after you have healed could be a big mistake.

If your GI doctor wants to check how your healing then yes go ahead and endo at a year gluten-free. Or do it if you are still having issues but I would not challenge and do it just for diagnosis at that point.

[ravenwoodglass]

I found a really good gastroenterologist in seattle today. his name is Young Oh and he is at Minor and James. he specialises in celiac and was very friendly and knowledgable. will be doing the endoscopy inless than 2 weeks so I'm suppsed to eat gluten again. been gluten-free for about a month. I might see f he will redo my bloods too!

It's wonderful that you have found someone who you feel comfortable with, that can really be hard. I hope everything goes smoothly and you get a definative answer. I'll be keeping my fingers crossed for you.

[Aleshia]

Will you be so kind as to report back how you feel when you start gluten again? I haven't had my endoscopy and won't for probably a year while my insurance kicks in, but I'm honest to god terrified of having to start gluten again -- I was so sick on it before.

Knowing what to expect from a source experiencing it would be great!

Good luck! =)

ok started gluten again yesterday decided to have the things I miss... donuts, pizza etc... anyway last night after dinner brain fog came back and all night long I felt like by stomach was on fire... I started to lose my balance again this morning. also had trouble sleeping... didn't feel refreshed when I woke up... hard to sleep when you tummy is burning!

[Aleshia]

thanks I've been through so many doctors I was starting to feel like I was just gonna have to do this on my own but this doctor seems to truly care about his patients and celiac disease is one of his specialties... he is also willing to work with my naturopath which is a difficult thing to find!

[WhimsiKay]

If you have been gluten-free for a year before you can do the endo and you have had a good resolution of your problems a gluten challenge is not IMHO going to be a good idea. If you have a good dietary response and you heal they would have to literally make you extremely ill again with about 3 months of regular gluten injestion for any chance of the biopsies to come back postive. Dietary response is really the best diagnostic tool we have right now.

Usually the endo is done for diagnosis when folks have not yet been gluten-free or have only been gluten-free a short time. It is not unreasonable to challenge a month after suspecting you have it, but challenging a year after you have healed could be a big mistake.

If your GI doctor wants to check how your healing then yes go ahead and endo at a year gluten-free. Or do it if you are still having issues but I would not challenge and do it just for diagnosis at that point.

Thank you for the advice! The main reason I'll have to do an endo is to check for "anything else" - -the doctor may not want to do specifically this, but if I went in right now, this is what I'd do. I'm diagnosed by diet-change (blood tests came back negative, but the doctor said, "Off gluten? Feeling better? Congrats, you're gluten-intolerant."), but they also want to be sure and rule out anything else like early-stages Crohn's or anything like that.

We'll see what happens in a year.

ok started gluten again yesterday decided to have the things I miss... donuts, pizza etc... anyway last night after dinner brain fog came back and all night long I felt like by stomach was on fire... I started to lose my balance again this morning. also had trouble sleeping... didn't feel refreshed when I woke up... hard to sleep when you tummy is burning!

Oh, my goodness. I will be keeping you in my good thoughts!

Hang in there, it'll be over soon.

[Aleshia]

ok had the upper endoscopy done yesterday. dr. said he found signs of celiac disease but took biopsies to be sure. also too biopsies of my esophagus said he saw signs of eosinophilic esophagitis. will get results for both things in a few days. I had him re-test my blood because I had un-knowingly not eaten gluten for about 3 days prior to my other blood tests... I guess we were trying to avoid gluten for my son and I just didn't happen to eat anything else that had gluten in it... I ate all the things I missed eating... and now I don't think I will ever miss them again cause they made me feel so awful now! not just the brain fog and other symptoms I was having but my stomach felt like it was on fire! anyway... will post the results when I get them!

[Aleshia]

ok had the upper endoscopy done yesterday. dr. said he found signs of celiac disease but took biopsies to be sure. also too biopsies of my esophagus said he saw signs of eosinophilic esophagitis. will get results for both things in a few days. I had him re-test my blood because I had un-knowingly not eaten gluten for about 3 days prior to my other blood tests... I guess we were trying to avoid gluten for my son and I just didn't happen to eat anything else that had gluten in it... I ate all the things I missed eating... and now I don't think I will ever miss them again cause they made me feel so awful now! not just the brain fog and other symptoms I was having but my stomach felt like it was on fire! anyway... will post the results when I get them!

ok so here are the results... biopsies of esophagus came back "normal" biopsies of duodenum came back "mild nonspecific increase in inflammatory cells w/out obvious evidence of celiac sprue"

not sure where to go from here

should I get a followup appt?

[cyberprof]

ok so here are the results... biopsies of esophagus came back "normal" biopsies of duodenum came back "mild nonspecific increase in inflammatory cells w/out obvious evidence of celiac sprue"

not sure where to go from here

should I get a followup appt?

The key words here are "Without OBVIOUS evidence". As we all know, celiac isn't always textbook.

I would ask to see the pathology report from the biopsies. Inflamation is a bad sign. However, some docs won't diagnose celiac at the Marsh 0 or Marsh 1 level. see this link. Open Original Shared Link

You may have "increased number of intra-epithelial lymphocytes, usually exceeding 20 per 100 enterocytes" which is Marsh 1. That's what I had so some docs say "Wait until you show definite signs like Marsh 3 or 4". I don't think you want to do that. If you had a good gluten free trial (and if I remember correctly you did) then consider that you are in the early stages and don't want the damage to get worse.

Good luck!

~Laura