Update/saw my Gastro Doc today

[adoptbc4]

Hi all,

Wanted to share my update after seeing the GI.

He's starting me on Colestid (bile absorption), 2g daily in the a.m. Recommended cutting Immodium down to 1 a day and hopefully, less, if my symptoms start improving.
He was very supportive regarding the diet changes and is having me try the Allign probiotic capsules, too. He was concerned about my 10 lb weight loss--I am already on the thin side, so hopefully, that will slow down.
I completely forgot to ask about the celiac testing, so I will do that soon with my PCP.

It was wonderful to vent and be heard--I have used this GI practice for 9 years now, although this Dr is fairly new to me. He gave me 40 minutes of his full attention and also addressed other gastric issues I have going on.

I felt so relieved when I left--I have always been happy with the care I've received there--they go above and beyond.

I'll start the Colestid tomorrow and am waiting for my Magnesium and Vit D to come from Amazon.


Robin

[tex]

Hi Robin,

It sounds as though you have a GI specialist who is way ahead of most of his peers. Good for him.

Please be aware that the celiac blood tests have very poor sensitivity and they will tend to show false negative results if you have been following a GF diet for more than a few weeks or so. The sooner you do the blood draw the better, because the anti-gliadin antibody levels in the blood fall relatively quickly after gluten is withdrawn from the diet. However, if you have been reacting for a long time (years), your antibody level should be relatively high, so that the antibodies will be detectable for a longer period of time (maybe several months) after gluten is withdrawn from the diet (compared with someone who has not been reacting as long).

Also, if your doctor does not suggest it, you might want to ask your doctor to also order a test to rule out selective IgA deficiency. Approximately 1 in 500 people have selective IgA deficiency, meaning that their immune system is incapable of producing normal amounts of immunoglobulin A. Since the celiac blood test involves testing for both IgA and IgG antibodies to gluten, anyone who has selective IgA deficiency will typically receive a false negative result on the test.

Among people who are sensitive to gluten, approximately 1 in 300 have selective IgA deficiency. We have a surprising number of members here who have that problem, and they cannot use the celiac blood tests, nor the EnteroLab stool tests, because both testing systems require normal IgA production capabilities.

Thank you for the update, and good luck with your treatment,
Tex

[SUE ANN]

Hi Robin...

be careful with the Align probiotic - check it's ingredients - i was told by my GI doc 3 years ago to go dairy free and he wanted me to take Align also...it wasn't until recently that someone on here cautioned me about it...lo and behold my align capsules had MILK in them, so for now i'm not taking any of the probiotics...i'm still healing...diagnosed with lymphocytic colitis only a few months ago, even though i've been having problems for over 3 years...biopsies finally showed the culprit!...

[Tor]

From what I can see 2 g of colestid is the minimal dose and 16 g the maximal dose. If you're not responding, it can be due to too low dose. I needed 16 g og cholestyramine (8 g x 2) when I first started. After diet changes I'm now down to 8 g (4 g x 2). The dosage will be trial and error in the beginning.

BTW: I think it's smart trying bile acid sequestrants. The side effects is regarded as less severe than those of budesonide. The doctor seems knowledgeable.

Tor

[adoptbc4]

Tor and Wayne, about the IgA and the Colestid.
Sue Ann, I had no idea Align had milk in it, thank you, I obviously can't take those, am very lactose intolerant!

Everyone here has been so helpful--thanks again :)