Saw Gi Doc Today...

[Rachel--24]

Well I finally saw the GI today. He was very nice and spent about an hour with me.

We are going thru with the biopsy (Oct. 3rd) to try to get a more definitive answer for me. He explained that its likely any damage would be healed at this point but that anything is possible. Also that if its positive it would be "official" for me but if its negative it won't mean I don't have celiac disease after 5 months mostly gluten-free. He suggested 3 week gluten challenge but I don't want to since I've just started gaining weight and feeling good. He said a positive result will only give me a piece of paper stating it but that how I'm *feeling* after going gluten-free is the best test. He will check to make sure nothing else is going on as well. I told him I had gene testing and I dont have either of the celiac genes...he said those genes account for the majority of cases but not all cases. He said there are more genes involved and they don't know all of them yet. He had a good attitude and said my case is educational for him and he's interested in how the biopsy will turn out...he's hoping he can give me a diagnosis but I think the chances are very slim....even if I do have celiac disease. Bascially everything he said is what I've already learned from everyone here but I'm really happy to finally see a doctor who seems to care and is knowledgeable. I'm just going to pray that some miracle happens with the biopsy cuz after all I've been through for some reason a definate dx would mean alot to me. Well not enough that I would consider a gluten challenge....no way.

[Carriefaith]

Sounds like a good doctor I hope the biopsy goes well.

[Rachel--24]

Thanks Carrie

[Guest nini]

I can't believe I'm saying this but... I LIKE THIS DR.!!! Personally I don't think your biopsy is going to show anything, but since he said he is looking for "other stuff" then I won't complain! Glad it went well for you and you feel like he is willing to learn. I totally agree with most of what you said he said!

[Wandering Hermit]

Hey Rachel -

What a coincidence, I also saw a GI for the first time today after being gluten-free for 5 months!

I saw him because I continue to have loose BMs and I'm concerned that I am not 'normal' yet.

In two days they are going to do the barium swallow and small bowel follow-through. He mentioned lymphoma (yikes!) but I'm glad that he will be proactively looking for tihis. I wish they would have done it sooner.

However I think this guy does not know a lot about celiac disease. He thinks all my symptoms should be gone after 5 months gluten-free, and is very worried that I am not 100% okay. It seems like from what I have read on this board, many people take more than 5 months to be totally normal again.

So he also suggested that we may do an endoscopy and colonoscopy at some point, depending on what the upper GI shows.

[Rachel--24]

Hey Rachel -

What a coincidence, I also saw a GI for the first time today after being gluten-free for 5 months!

I saw him because I continue to have loose BMs and I'm concerned that I am not 'normal' yet.

In two days they are going to do the barium swallow and small bowel follow-through. He mentioned lymphoma (yikes!) but I'm glad that he will be proactively looking for tihis. I wish they would have done it sooner.

However I think this guy does not know a lot about celiac disease. He thinks all my symptoms should be gone after 5 months gluten-free, and is very worried that I am not 100% okay. It seems like from what I have read on this board, many people take more than 5 months to be totally normal again.

So he also suggested that we may do an endoscopy and colonoscopy at some point, depending on what the upper GI shows.

<{POST_SNAPBACK}>

I'm assuming you never had a biopsy then? Have your other symptoms improved since going gluten-free? Its good that he's checking other things just to be sure but yeah....it seems like some people took more than a year to totally heal so maybe you had alot of damage to begin with. I had a barium test awhile back...way before diagnosis....everything was normal. I had to drink some really nasty stuff for it though...YUCK!

Hopefully you're stools will get better soon...I've read where people continue to have problems for months and then all of a sudden normal stools again!

I was scheduled for the endoscopy/colonoscopy in May when I'd only been gluten-free for 3 weeks as opposed to 5 months now. Unfortunately there was a mixup regarding the preparation for the procedure and I drank the wrong stuff and got really sick...I refused to drink more and my appt. was cancelled. A real bummer since I found out today from this new GI that the drink was only for the colonoscopy so they could've still had me come in for the scope.

He's only going to scope me and he doesnt feel the colonoscopy is necessary for me. I'm so bummed that I could've had this done back then...oh well...everything happens for a reason. Maybe its not meant for me to get a "real" diagnosis and I should just be satisfied with the fact that I'm healing.

[Rachel--24]

I can't believe I'm saying this but... I LIKE THIS DR.!!!  Personally I don't think your biopsy is going to show anything, but since he said he is looking for "other stuff" then I won't complain! Glad it went well for you and you feel like he is willing to learn. I totally agree with most of what you said he said!

<{POST_SNAPBACK}>

Yeah...I was *amazed* myself. After a long string of REALLY bad doctors over the past 3 years I'd pretty much given up hope that anyone at my HMO would ever be of any help. I usually drive home from my doctor visits either very angry or in tears. I prayed for a decent doctor today and I actually got one!!! It was sooo refreshing.

[KaitiUSA]

He does sound like one of those rare good doctors we find. Glad you found a good one and hope things go well.

WanderingHermit- It took me 8 months to really get back to normal..for some people it can take a few years for symptoms to go away. Or maybe there is something in addition to celiac in your case..I don't know. I had to do that barium test and that was not fun but there could have been worse things to get done.

[skbird]

You totally scored, Rachel! Cool! That is great after so much time NOT knowing what was going on. Excellent!

I hope I have good results when I finally get into a gastro in my town... I'm beginning to roll my eyes because a month after being told I'm being referred, I still don't have an appointment. Sigh.

Stephanie

[Rachel--24]

I hope I have good results when I finally get into a gastro in my town... I'm beginning to roll my eyes because a month after being told I'm being referred, I still don't have an appointment. Sigh.

<{POST_SNAPBACK}>

Stephanie,

Have you called to make sure they sent the referral over? I don't know how it works for you but some of the "lamer" doctors I've had would forget to do stuff like this and I'd be sitting at home waiting....only to find out later no referral was sent.

Hmm..."lamer"....is that even a word?

Oh well it was nicest word I could think of to describe some of the docs I've seen.

[Wandering Hermit]

I'm assuming you never had a biopsy then? Have your other symptoms improved since going gluten-free? Its good that he's checking other things just to be sure but yeah....it seems like some people took more than a year to totally heal so maybe you had alot of damage to begin with. I had a barium test awhile back...way before diagnosis....everything was normal. I had to drink some really nasty stuff for it though...YUCK!

<{POST_SNAPBACK}>

No I never had the endoscopy, just blood work, but it sounds like I'm going to get one in the near future. He wants to rule out collagenous celiac and lymphoma. Jeez, those are two SCARY diseases to have.

[tarnalberry]

Woo! Go your doctor! Sounds great! Good luck with the test. :-)

[Rachel--24]

What is collagenous celiac? Sounds scary....

[Rachel--24]

Woo!  Go your doctor!  Sounds great!  Good luck with the test. :-)

<{POST_SNAPBACK}>

Thanks Tiffany

[Wandering Hermit]

What is collagenous celiac? Sounds scary....

<{POST_SNAPBACK}>

Collagenous Sprue - Second Edition of Textbook of Gastroenterology, J.B. Lippincott Company, Philadelphia 1995

Celiac that do not remain on a gluten-free diet can develop Refractory Sprue. Refractory Sprue and Collagenous Sprue patients who initially respond to a gluten-free diet many subsequently relapse despite maintaining their diet. Such patients are then "refractory" to further dietary therapy. In contrast, others are refractory to dietary therapy from its inception and, assuming they are truly on a gluten-free diet, may not have celiac disease; these patients are said to have unclassified Sprue. Some refractory patients with celiac disease, typical or atypical, respond to treatment with corticosteroids or other immunosuppressive drugs. In others, there is no response and malabsorption may be progressive. Collagenous Sprue is characterized by the development of a thick band of collagen-like material directly under the intestinal epithelial cells and has been regarded by some as a separate entity from celiac disease. However, subepithelial collagen deposition has been noted in up to 36% of patients with classic Celiac Disease and in Tropical Sprue. Although individuals with large amounts of subepithelial collagen may be refractory to therapy, the presence of collagen does not , a riori, preclude a successful response to a gluten-free diet. Collagenous colitis accompanying celiac disease also has been observed and would be considered in the diagnosis of diarrhea occurring in celiac disease patients on a gluten-free diet.