Had Bloodwork Done.....

[Canadian Karen]

tt IgA - 13 (normal)

So, basically, when I went to see Dr. Moore, he actually mentioned refractory celiac sprue due to my failure to respond to the diet. Now, with these results just in, I basically believe myself that it is not the celiac that is refractory, but the collagenous colitis. For those of you not aware of my situation, my system failed to respond to both steriods budesonide and prednisone, I still have the chronic diarrhea.

Also, when he had me do the "stool collection", that was apparently done for two reasons...... Number one: to see the volume, and in that respect, what he stated was anything over 1000 (I forget the form of measurement he used.....) was considered very high, and mine was 1300. So the volume of diarrhea is the most he has ever seen..... The second reason was some test he ran on the sample to see whether I was following the gluten-free diet. Apparently, whatever test that was, I passed, he said that if I wasn't following the diet, the number of whatever he was testing would have been very high, and it wasn't.......

So now, he wants to change my SSRI's. I was on 60 mg of Prozac daily, and he wants me to change to Effexor instead as that apparently does not cause as much diarrhea as Prozac can..... He says that it won't make that much of a difference, but at this point, any little improvement will be welcome.....

We are still awaiting test results from a bunch of bloodwork the immunologist did. Apparently, these tests are really obscure and and take about 6 weeks to come back..... I go back to see Dr. Moore on Dec. 16/05.

Well, that's it in a nutshell. When Dr. Moore used the word "refractory", I started to cry. He basically said that there is absolutely nothing to worry about, that refractory simply means "not responding", nothing else.

Where we go from here, not sure...........

Hugs.

Karen

[jenvan]

Karen-

so sad to hear how much you are still struggling. i pray you get answers soon. have you explored the SCD diet at all?

[KaitiUSA]

Aww Karen I am sorry things are not going so well for you. I will keep you in my prayers and I hope things get better for you soon.

[Rikki Tikki]

Karen:

Are you feeling any better. I was just reading that a large percentage of epople with celiac do not respond well to the diet. I know my body is just now getting better after being diagnosed about 3 years ago.

I have read you on here for quite some time so I know you have had quite a struggle.

Keep up the good work and I will keep you in my prayers.

[FaithInScienceToo]

Hi, Karen -

I am sorry to hear that you haven't responded to the diet - perhaps the change in med will make a significant difference for you?

I have not researched 'refractory sprue,' but am aware of it.

Can it 'improve' in time?

Do you know the stats on how many people, if any, with refractory sprue begin to respond to the diet, in time?

My thoughts are with you.

Gina

[bluelotus]

I have not heard of refactory (sp?) sprue before, could someone explain if they get a chance? Thanks.

[Rikki Tikki]

Refractory sprue is basically celiac sprue that does not respond to the elimination of gluten in your diet. It's kind of like you never heal from the celiac regardless of the fact that you are gluten free. Hope that makes sense.

[FaithInScienceToo]

Yes, 'refractory sprue' means 'no positive response to a gluten-free diet,' BUT does it always mean 'NEVER'? Anyone know about this?

I have not looked into it yet...

I have had no need to, since I have had a positive dietary response...but, maybe there is hope for Karen? Maybe the response is simply delayed, if she just hasn't healed up enough yet to feel 'clinically' improved?

I hope so.

G

[Rikki Tikki]

That is what happened to me. It has taken about 3 years for me to feel good. So it can happen!!!

[Canadian Karen]

Hi Guys!

I still have to wait until I hear from the GI specialist about the rest of the bloodwork (that apparently takes 6 - 8 weeks to come back because they are really obscure tests.....). I firmly believe that the prednisone had a positive effect on the celiac disease and my continuing problem is the collagenous colitis that we can't get under control...... Why else would my TT IgA go down to 13?

From what I have read about collagenous colitis, there are some people who just don't respond to any treatment and maybe I am just destined to have chronic uncontrollable diarrhea for the rest of my life...... oh joy.

I just have to keep my chin up and hope that Dr. Moore will have something else up his sleeve when I go back to him......

Also, I had my physical last week and the doctor called with results of some bloodwork she did. Once again, for the unpteenth time in my life, I am borderline anemic. My hemoglobin was 116 - she considers 115 and below anemic. She re-did the test just to make sure, haven't heard back that result yet. For those of you who get shots for iron, how low was your iron before they considered shots for it? Thanks!

Hugs.

Karen

[FaithInScienceToo]

Hi, Karen!

Good to hear that you and your doc are beginning to zero in on what exactly is going on with your bode.

I hope that the colitis thing can be gotten under control, if that is what's keeping the diarrhea going.

About why your TT IgA would go down...As you know, it goes down when your immune system begins to stop attacking your small intestine...after going gluten-free...

It does not mean, though, that your small intestine will have healed enough to stop the clinical symptoms, as people heal at different rates, for various reasons...So, maybe you will find that it still only a matter of time needing to pass before you are healed enough from going gluten-free to get more-normal bowel function back?

I hope time will prove that you can/will recover fully - and that your colitis diagnosis is not as severe as you fear -

Love,

Gina

[thomas3000]

Check with the pharmacy and make sure your meds are gluten free!!! That may be a reason your not responding to the gluten-free diet...