GI appointment yesterday

kscolorado · Post by **kscolorado** » Fri Aug 07, 2009 9:49 am

Hi everyone, I saw Dr. Lewey yesterday. He is very much like his articles you read....very technical! I do trust him however but he did make my head swim. He believes that I am celiac or at the very least very gluten intolerant with a high risk for celiac (my dq8 and dq2 genes) but since I did the diet first and won't challenge again he can't officially say so. He wants to do a upper and lower gi next week (I chose soonest so I wouldn't chicken out!) and a big battery of blood tests plus a bone density test as well. He wants to do the upper and lower to look for some mast cell something or other, I think tex gave me a link to that once. Anyway, Dr. Lewey thinks that it could be connected with celiac. He shared another theory with me that because I did Atkins in my mid thirties ( I thought it cured my IBS) he believes that it is such a very low gluten diet that once I resumed a regular diet it could have shocked my system to eat gluten again and possibly turned on those celiac genes? He says it just a theory but he does see it with patients feeling healed on Atkin type diets. Thought that was interesting! He feels the acne that I had was most likely a gluten incidence, he pointed out two spots on his own face that he believes was cross contamination. He talked to me about his son who is gluten intolerant deciding to partake at a party in college (beer) and was near camatose in the hospital. Very interesting doctor! Anyway, extremely nervous about the proceedures next week, upper and lower at the same time! Never had them done so very very nervous! BTW the blood tests are another celiac panel because my last one only did 2 of the 5 and he wants to see the other numbers. Also he ordered a full CBC, IRON, TIBC, FERRITIN, FOLATE, B-12, RBC FOLATE, Vitamin D and ASCA IgA, IgG, and ANCA IgG ELISA (whatever that is?) Wish me luck!

Gas Bag · Post by **Gas Bag** » Fri Aug 07, 2009 10:19 am

Hi, don't worry about the upper and lower, you are talking about an endoscopy and a colonscopy, correct? they are a piece of cake, ok don't eat the cake, but anyway, the prep is the worst part but the actual procedure they put you out so you don't feel a thing and have no idea what is going on. I had both a bout 3 years ago and it was totally painless.

Good luck to you and I hope you get some answers. It must be nice to actually have a Dr. that at least has a clue.

Deb

Courtney · Post by **Courtney** » Fri Aug 07, 2009 10:35 am

Hi Kathy,

The upper and lower together are a piece of cake, as Deb says. I had them done together last summer. The prep is the worst part, as I'm sure most people would agree, but the procedure itself is painless. Some people report having a scratchy throat afterward, but I didn't. You don't feel like you've "had surgery" because there's no cutting, except for where they take the biopsy. A bone density test is very easy. I kind of wanted to stay in mine because the table they had me lie on had one of those tempurpedic type mattress pads! You just lie there and the machine scans you. Your doctor sounds very interesting.

Courtney

Gas Bag · Post by **Gas Bag** » Fri Aug 07, 2009 10:50 am

I never got the scratchy throat either.

And I was just thinking how some of us experienced an almost spontaneous remission after the procedure, it happened to me. You can always hope. Never give up hope. Even though it gets dashed on the rocks sometimes.

And the Bone Desity test is rather relaxing, I have had two and I just pop over to the clinic during my hectic day at work and it is nice to just lay there quietly for a bit.

Deb

ant · Post by **ant** » Fri Aug 07, 2009 11:44 am

Kathy wrote

He shared another theory with me that because I did Atkins in my mid thirties ( I thought it cured my IBS) he believes that it is such a very low gluten diet that once I resumed a regular diet it could have shocked my system to eat gluten again and possibly turned on those celiac genes? He says it just a theory but he does see it with patients feeling healed on Atkin type diets. Thought that was interesting!

Could this be a reason why some GI docs try to persuade us not to go on a GF diet? I am still perplexed as to why they seem to dismiss diet for MC. Best ant

Gas Bag · Post by **Gas Bag** » Fri Aug 07, 2009 11:58 am

ant wrote:Kathy wrote

He shared another theory with me that because I did Atkins in my mid thirties ( I thought it cured my IBS) he believes that it is such a very low gluten diet that once I resumed a regular diet it could have shocked my system to eat gluten again and possibly turned on those celiac genes? He says it just a theory but he does see it with patients feeling healed on Atkin type diets. Thought that was interesting!
Could this be a reason why some GI docs try to persuade us not to go on a GF diet? I am still perplexed as to why they seem to dismiss diet for MC. Best ant

'Cuz alot of them have their heads up their arse's.

Deb

Post by **tex** » Fri Aug 07, 2009 12:05 pm

Kathy,

Awesome! Dr. Lewey is arguably the best currently-practicing GI doc in this country, for patients with gluten-sensitivity, and it shows, doesn't it. FWIW, I believe he's right, that dietary shocks can alter genes.

It will be very interesting to see what he discovers about possible mast cell involvement. I have a hunch that you will learn a heck of a lot from his interpretation of all those tests. I'm impressed that he didn't insist that you do a gluten challenge. (Most GI docs probably would have, since that makes their job much, much easier, if you actually are a celiac).

Good luck with the exams, but as Deb and Courtney said, the cleanout prep is the worst part - after that he'll do all the work, and you won't feel a thing. I'm sure that you will most likely look back on this as one of the most important events in your life - a turning point.

Tex

Post by **tex** » Fri Aug 07, 2009 12:13 pm

Ant wrote:Could this be a reason why some GI docs try to persuade us not to go on a GF diet? I am still perplexed as to why they seem to dismiss diet for MC. Best ant

No, (as Deb said, in so many words,

), most GI docs are so unfamiliar with these issues that they've probably never even heard of that theory. They're still living in the dark ages, as far as gluten sensitivity is concerned. They have that attitude opposing the GF diet, simply because it's not in their text book, as a treatment option, so they resent someone even bringing it up, (they resent patients who appear to know something about the disease, of which they are not aware, themselves, because they feel "threatened" by such patients). It's a psychological intimidation thing. IOW, they have fragile egos, and they resent someone trying to expose their ignorance.

Tex

kscolorado · Post by **kscolorado** » Fri Aug 07, 2009 12:22 pm

Thanks everyone for your replies. I keep hearing the prep is worse, and heck I'm used to going to the bathroom a lot anyway!

Gas Bag · Post by **Gas Bag** » Fri Aug 07, 2009 1:18 pm

kscolorado wrote:Thanks everyone for your replies. I keep hearing the prep is worse, and heck I'm used to going to the bathroom a lot anyway!

Boy, I said the exact same thing. Holy Hanna, I couldn't believe how much more..er stuff, I had in me. Where on earth it must have been hiding I can't imagine.

I, as I am sure others have had to do as well, was still "going" when I got to the hospital and even had to get up and go after I was hooked up to the IV.

That was fun, dragging the stand with the IV bottle into the bathroom in that stupid hospital gown with my ass hanging out. A person only has so many hands to deal with these things.
Oh E-gads, the nurse who got me ready for the procedure was, much to my chagrin, my neighbor, I just kept thinking, "oh great the neighbor lady has seen my butt". At the time that was my biggest concern. Sheesh...funny the things you remember when the subject comes up.

Tex, you sure nailed that right on the head with your observation/critique of a whole lot of Drs.

I keep saying they don't call it practicing medicine for nothin'..I just wish they didn't have to practice so much on us.

Deb

mbeezie · Post by **mbeezie** » Fri Aug 07, 2009 2:31 pm

Kathy,

A bit jealous that you got to see Dr. Lewey. I tried to make an appointment but he won't see out of state patients:( I agree that he is the best in the country for what we are dealing with.

I find the whole Atkins theory VERY fascinating. There are literally millions of people who did that diet and could have been affected in the same way.

The beer incident with his son also has me reeling. My son is still young but GF/CF and I have worried about him doing the typical stupid high school/college thing. Oh my, one more thing to worry about with parenting.

The actual colonoscopy/endoscopy is no big deal . . .but don't plan on leaving home the day before

Mary Beth

JLH · Post by **JLH** » Fri Aug 07, 2009 3:02 pm

I, the biggest chicken in the world, survived my first colonoscopy.

It wasn't at all something I should have been so fearful of for so long. I had planned on having it the 12th of Never but the pain, which turned out to be diverticulosis, and D. (big d) convinced me otherwise.

Gloria · Post by **Gloria** » Fri Aug 07, 2009 5:26 pm

I'm amazed at this statement:

he pointed out two spots on his own face that he believes was cross-contamination.

What?? Were these permanent spots or red blotches? I can understand a temporary reaction to cross- contamination, but not permanent disfigurement.

Gloria

starfire · Post by **starfire** » Sat Aug 08, 2009 5:53 am

Gas Bag wrote: Oh E-gads, the nurse who got me ready for the procedure was, much to my chagrin, my neighbor,

I can certainly understand that one!! Mine wasn't exactly my neighbor in the strictest sense but I certainly knew her.

Love, Shirley

Gas Bag · Post by **Gas Bag** » Sat Aug 08, 2009 6:52 am

starfire wrote:
Gas Bag wrote: Oh E-gads, the nurse who got me ready for the procedure was, much to my chagrin, my neighbor,
I can certainly understand that one!! Mine wasn't exactly my neighbor in the strictest sense but I certainly knew her.

Love, Shirley

She lives almost directly across the street. We live in a very small town and all go to the same, as we call him "The Butt Doctor", and the procedures are done at the local hospital. "Our nurse" works there so she has seen everybody's behind, including my husband's.