Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Great Dr In Seattle

Aleshia

By Aleshia
in Doctors

Recommended Posts

Aleshia Contributor
Aleshia
Posted

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


WhimsiKay Apprentice
WhimsiKay
Posted

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 Enthusiast
cyberprof
Posted

Aleshia, Thank you!

~Laura

sickchick Community Regular
sickchick
Posted

WONDERFUL! And good luck with your tests! B)

ravenwoodglass Mentor
ravenwoodglass
Posted
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 Mentor
ravenwoodglass
Posted
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 Contributor
Aleshia
Posted
  • Author
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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Aleshia Contributor
Aleshia
Posted
  • Author

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 Apprentice
WhimsiKay
Posted
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 Contributor
Aleshia
Posted
  • Author

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 Contributor
Aleshia
Posted
  • Author
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 Enthusiast
cyberprof
Posted
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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    3. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    4. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
    5. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748
    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.