GF guy worried and with questions.

sarkin · Post by **sarkin** » Tue May 17, 2011 1:13 pm

Linda,

I have Pepto in my purse even as we speak. I hope to beef up my list of things in the category "don't leave home without it" (especially before we travel in June). Meantime, I find the little pink bottle remarkably reassuring whenever I see it in my bag (though I find the same pink color of the pills off-putting, and haven't needed one for several weeks). I went so far as to soak the label off an empty bottle, which I'll use for other things I don't want to leave home without, once I figure out what they are. I was considering trying L-Glutamine after I read about it, but I can't bear to try anything new at the moment.

I feel lucky that so far I'm pretty stable, and may be poised to get myself on an even keel and stay there without Entocort. But I would take it in a heartbeat, if I can't get there via diet alone. I could never have come this far without what I've learned here. I truly believe that this forum spared me months, maybe years, of suffering.

Three cheers for recovering, and saved sanity, and yes - symptom relief!

Sara

Joefnh · Post by **Joefnh** » Tue May 17, 2011 3:58 pm

hoosier1 wrote: Wonder what joe's CT scans look like. Joe, you out there?
Rich

Hi Rich I never had a CT scan, my GI doc talked about it but given the positive biopsy results of just about 65um on average for the collagen band confirming CC and the barium test and pill camera confirming the Crohns, I asked what good would be exposed to that much radiation be.

Keep in mind that one CT scan is the equivalent of 500 chest x-rays on average. For me there has to be a real benefit for that type of exposure. Remember radiation damage is cumulative over your lifetime

http://health.usnews.com/health-news/ma ... -radiation

--Joe

hoosier1 · Post by **hoosier1** » Tue May 17, 2011 5:30 pm

Hey Joe,

I've been scanned and xrayed more times than I can count. Plus I work around a lot of portable xray. I should probably be concerned, but what the heck. What's the real story on the TSA scannersnfrom an emissions standpoint?

Rich

Post by **tex** » Tue May 17, 2011 6:45 pm

Rich,

If you do a lot of flying, you're accumulating a lot more radiation from exposure to cosmic radiation, than you're receiving from the airport scanners.

it would take at least 3,300 body scans to reach the equivalent of one chest X-ray.

But note that you get as much radiation as that TSA scan exposes you to, from cosmic radiation bombarding you during about every three minutes worth of flying at around 30,000 feet.

Therefore, a single 5 hour flight would expose you to as much radiation as approximately 100 TSA scans, (unless I made a math error).

http://www.politifact.com/truth-o-meter ... s-emit-mu/

Tex

Gloria · Post by **Gloria** » Tue May 17, 2011 10:10 pm

Sara wrote:I feel lucky that so far I'm pretty stable, and may be poised to get myself on an even keel and stay there without Entocort.

That's terrific news, Sara! I hope your success continues.

Gloria

sarkin · Post by **sarkin** » Wed May 18, 2011 6:23 am

Thanks, Gloria. I hope so too - and I may yet be proven wrong... in which case I remind myself again that I don't know everything. My tendency is always to decline, avoid, or refuse medication, but if that strategy is counterproductive, I will not cling to it ;)

Glad you're on the mend.

Love,
Sara

quincy · Post by **quincy** » Sat May 21, 2011 8:08 pm

I have been taking a dose of pepto from time to time. constant reflux lately so the pepto helps that as well. I am going to a new GI on Monday. I have been going
to a celiac doctor and I am just feeling that my complaints have gone unheard by my current doc. My doc suggested last year that I might have MC but never did any follow through. I went through so many months of loose bm's (never watery D however or never bloody D either) and I kept asking about a short course of steroids or something to jumpstart my healing. But nothing and so I just suffered until I got better over time. This most recent flare, my GI finally offered to call my GP who ordered the levaquin and the ct scan but my GI never called me back to discuss my ct scan results...

am I expecting too much?

This new doc is the head of Gastroenterology at Valley Hospital in Ridgewood NJ. If I have a good consult with him I think I will have him do the colonoscopy.

any thoughts on GI docs in this thread please free to respond.

Post by **tex** » Sat May 21, 2011 8:24 pm

Quincy wrote:am I expecting too much?

Nope.

My thoughts are that your current GI specialist isn't doing you much good. I hope you have a lot better luck with the next one.

Tex

quincy · Post by **quincy** » Sat May 21, 2011 8:40 pm

thanks Tex. In fact, I have never told anyone this till now, but when I went for a follow up visit after my initial dx, and while I was waiting for over an hour to see the doc, I was offered some grilled chicken, which I assumed was gluten free because I was at a celiac specialists office, and I wound up being sickened for a week by the chicken because it was cross contaminated....!! I was in pain for a week and I got an email from the doc like 10 days later saying that the chicken was most likely contaminated with gluten.

when I had my bone density test there, I got the report saying that I had bone loss in my right hip, but I noticed that the report said I was a female, which the last time I checked....hmmm. anyway, I called to ask if the report was an error and if it was, my suspicion was that the bone loss was going to be much worse. A month later I get a revised bone density report showing osteopenia all over. I was just about to leave for vacation and found out in the mail I had this condition. I went to a endocrinologist who put me on 50000 iu's of vitamin d. the gi office never called me to tell me what to do, I had to seek out other doctors to treat me for these issues.... been a bit frustrating because I was supposed to be going to a premier celiac treatment center....

the good news is that my most recent labs showed an increase in Vit D from 23 to 50!! woo hooo. and my tTg are negative, and IgA down to 33, Igg down to negative range as well.

Post by **tex** » Sat May 21, 2011 8:54 pm

Hmmmm. It sounds as though your previous GI runs a pretty loose ship.

That's a heck of a note.

Those recent lab results do indeed sound encouraging. At least most of your treatment, (from your other doctors), seems to be going well, in spite of poor support from your GI specialist.

Tex

quincy · Post by **quincy** » Sat May 21, 2011 8:59 pm

yes thanks. but its like that joke about how many electricians does it take to screw in a light bulb kinda thing, you know? I don't want to have to
seek proper care from several doctors to get proper and comprehensive care...

Gloria · Post by **Gloria** » Sat May 21, 2011 9:50 pm

Quincy wrote:I was offered some grilled chicken, which I assumed was gluten free because I was at a celiac specialists office, and I wound up being sickened for a week by the chicken because it was cross contaminated....!! I was in pain for a week and I got an email from the doc like 10 days later saying that the chicken was most likely contaminated with gluten.

Boy, if you can't trust a celiac specialist to provide GF food, who can you trust? Unbelievable.

Gloria

quincy · Post by **quincy** » Fri Jun 03, 2011 9:26 pm

My FM doctor recently did a CDSA and I got my results today, if anyone wants to comment:

First, at the Macroscopic level it was Negative for Mucus and Occult Blood (that has to be good, yes?)

Immunology: Fecal Lactoferrin Negative (good, yes?)

Bile Acids: No measurable amounts. Nada, zip, zero, no reading for LCA/DCA ratio either. This means that my gallbladder is not secreting any bile?
I know that you are not supposed to have too much bile acid in the stool but I don't have any detectable levels at all. hmmmm

Beneficial Bacteria: no growth for Lactobacillus (not good?) and no growth for escherichia coli, but I had good growth of Bifidum

Additional Bacteria shows overgrowth of the bad stuff: Citrobacter Braakii and Klebsiella oxytoca

My doc wants to put me on a non-absorbable anti-biotic first then take a probiotic formula called VSL 3.

BM's have reverted to nearly normal lately with the help of a powder called Ultra Clear. stool formation improving with Digestive Enzymes and LVGB supplement.

any comments or help on this would be appreciated. Does the lack of lactoferrin mean no Crohns? MC/LC/CC only can be determined by biopsy, right?

thanks again.

PS my most recent bloodwork shows no tissue transglutaminase but elevated levels still of IgA gliadin. My Vitamin D level is now up to 50 from last years reading of 11. so making some progress against CD as well.

natythingycolbery · Post by **natythingycolbery** » Sat Jun 04, 2011 5:20 am

Zizzle wrote:Quincy,
There are numerous threads on this forum about SSRIs, some very recent. One member , "Naty", improved considerably after changing meds.

Yes, Pretty much as soon I stopped taking them, the D completley stopped. Saying that though, I have been having a lot of side effects again recently so I think a trip back to the GI may be in order soon.

Post by **tex** » Sat Jun 04, 2011 9:07 am

Quincy,

A negative lactoferrin result means that you don't have active Crohn's or UC. Lactoferrin is not as reliable a marker for MC.

From Enterolab's website:

Tests for an inflammatory protein called lactoferrin from neutrophils (a white blood cell) in stool which mainly occurs in acute bacterial colitis and/or most forms of chronic colitis. It is almost always positive, and strongly so in ulcerative colitis and Crohn's disease, and while sometimes positive in microscopic colitis, not as often and with a less fervent reaction. It also can be negative in microscopic colitis, but this test would almost never be negative in very active ulcerative colitis or Crohn’s colitis. This test is superior (more sensitive and specific) to the old fashioned microscopy test for fecal white cells (fecal wbc’s).

Why order Fecal Lactoferrin?This test is mainly indicated to detect the presence of colitis in the setting of acute or chronic diarrhea, or to assess for the presence of or the activity of chronic forms of colitis such as ulcerative colitis or Crohn's colitis in persons with suspicious intestinal symptoms.

Are you a celiac? If not, your elevated blood levels of anti-gliadin antibodies, suggests that you are probably a "work in progress". However, the negative TTG result means that you didn't have any active autoimmune activity at the time the sample was drawn.

That matches the lactoferrin result. That's true for your blood, anyway. However, that does not mean that a stool test would not show positive TTG results in the lumen, (inside the intestine). Stool tests are much more accurate than blood tests, (at least the Enterolab tests are extremely accurate - I don't know about the lab your doctor used.

).

I'm not a doctor, but I would think that unless you are in the process of digesting fat, and assuming that your gallbladder is functioning properly, then there shouldn't be more than a small amount of bile being released into your small intestine. If there were, it would indicate leakage, or the absence of a gallbladder. Maybe the test just failed to detect small amounts.

Some meds can affect the recycling of bile acids, (bile acid sequestrants, such as Questran, for example), which can prevent them from being reabsorbed into the bloodstream. If no gallbladder is present, then the bile flow will never be interrupted, (unless the common bile duct is blocked - which should be indicated by a lot of pain). If no bile is ever released, that would indicate blockage of the common bile duct, or a malfunction further upstream. I could be wrong, though, because I'm certainly no liver expert.

Quincy wrote:MC/LC/CC only can be determined by biopsy, right?

Correct. That improvement in your vitamin D level is excellent.

Tex