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IBS-D & Pregnancy *LONG*
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kayleen4246 posted:
Hi everyone, This is my first time posting & I also did post this over on the pregnancy boards but I thought help from this side would be good too. Some background: I have had IBS for 3 yrs w/o knowledge of what made it start. I had a roll-over accident right before onset so possibly stress induced but also had a C-diff infection that wasn't found for over a year. I still have really bad problems and have been on every medication they could think of *anti-spasmodic, bile binders, probiotics, anti-depressants *various*, anxiety meds, colon cleansers, elimination diets, allergy testing, lotronex, hypnosis* and not much made a difference. I found minimal relief on a combination of lotronex and questran (bile-binder) and I also eat no dairy as I have a very mild allergy and I'm willing to do anything at this point to stop this. It has made working almost impossible though I do barely hold on to my job at this point. However, my doctor wants me to get off the lotronex which scares the h*ll out of me. So here is the situation: I am in my 3rd trimester, 29 weeks on Thursday. TMI: I have had a bad stomach ache for almost three weeks now, not to the point of dehydration but definite diarrhea and painful cramps *Definitly stomach ones, not baby as far as I can tell* This is every day, multiple times a day & very painful along with bad bloating. My doctors kept me on it throughout my pregnancy at the risk of losing the baby due to complications from it. Anyways, I was reading that sometimes the transitions between trimesters can cause stomach problems due to fluctuating hormones. Have any of you experienced this while pregnant with IBS-D?? How did you cope with your IBS-D during pregnancy cause I am on the verge of a breakdown? Did it go away after pregnancy? Thank you so much for any help!!!
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TrudyGERD responded:
Have you had any follow-up tests to be sure that the c-diff was truly cleared up? It takes several separate consecutive negatives to be absolutely sure.

Have you tried any different brands of probiotics to try to get your intestinal flora back on track since the c-diff treatment? How long did you take them? Which ones did you try?

Are you eliminating all traces of milk (lactose, casein and whey) or do you just avoid the obvious sources or milk? What other elimination diets did you try? Are you sure that you actually eliminated the foods? Most people don't realize what's involved in an elimination diet.

If you're worried about dehydration, try drinking some Pedialite every day that you have diarrhea. It's much lower in sugar than Gatorade but it's just as good regarding hydration.

Has the doctor done any testing of your vitamin levels? You need to be sure that you're not suffering malnourishment problems because of all this. It's important to not only you but also to the baby.

What testing have you had done?

My GI issues definitely changed when pregnant but they reverted to my pre-pregnancy "normal" once I stopped nursing. The changes in hormones can shift things one way or the other (good or bad I'm sorry to say). I say normal in quotes because the only time I can remember being normal is when I was pregnant and nursing. Until getting correctly diagnosed and making all sorts of lifestyle changes, I was always having GI problems. I was unbelievably blessed to have my GI problems straighten out when pregnant and nursing. I can only imagine what you're going through. {{{HUGS}}}
 
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kayleen4246 responded:
Thanks so much for your reply! I have had multiple more testings for the C-diff...I think around 6 all of which came back negative & they treated me for 3x even with negative tests just to make sure. I have tried a couple brands of probiotics (took each about 3 - 4 months with no real results). I was thinking about trying that Digestive Advantage when I wasn't pregnant anymore as I have been advised not to start anymore treatments until than. As far as an elimination diet- I cut out everything but plain rice, plain toast & applesauce for 4 weeks with no resolution of symptoms at all. I than tried cutting out each of those individually with no results. With the allergy testing, it came back that I wasn't allergic to whey. Since it was a very mild allergy (almost non-detectable) I have cut out all major sources of milk & cut out casine but i do eat bread occasionally. The doctors test my blood levels regularly and the only thing that is off is an elevated Sed Rate indicative of inflammation but they can't figure out why. Basically the doctors have pretty much given up on me, and I'm getting desperate. I know I can't do much while I'm pregnant but I don't know how to keep going like this after I'm not pregnant anymore.
 
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CalGal37 responded:
Kayleen, have you ever been tested for gluten intolerance, or is anyone in your family celiac? Would you be willing to take all forms of gluten (wheat, rye, barley, oats and malt) out of your diet to see what happens?

Any thoughts, Trudy????
 
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kayleen4246 responded:
I have been tested for celiac as well...they did this when they did my 2 colonoscopies/endoscopies. No one in my family has any stomach troubles at all or food allergies. I think they also did some kind of testing on wheat/oats/barley when they did the food allergy testing *they tested over 150 things* Would that cover the testing I would need to rule that out?
 
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CalGal37 responded:
Kayleen, I'm going to give you my 'take' on the testing that's done for celiac and it doesn't follow the typical medical theories because I've been through the situation with my husband and don't consider the 'standard' testing adequate, so please understand that.

I think the gold standard that's used is inadequate or flawed. It looks for villi flattening during endoscopy and not everyone has that depending upon the severity and length of the disease process. In addition, the biopsy is checked for the number of IEL's -intraepithelial lymphocytes. The standard is typically 20 or less and you're normal. At 40 or above, you're celiac. But what happens if you're 20 to 40? According to a pathologist I've talked with (after a friend was tested), they're told to still call it 'negative.' Oh yeah???? Not in my book. It means something is going on, but it's not reported that way. So until a person hits 40 in count - which could take a lot of time and a lot of misery - they're negative (and still miserable).

As far as the blood test goes - in my opinion it's not adequate. There are far too many false negatives for my liking, and it leaves many people still wondering 'what's wrong with me.' And then years later when some doc throws the test at them as a last resort because he's got a truly debilitated patient on his hands and everything else has been tried and this is a last resort - it's positive??? Forget it. By that time the person may have neuropathy or worse.

My feeling is there's only two ways to be tested - do an elimination diet and see what happens, or use the fecal antibody test (teamed with allele (gene) testing and get tested for cross-reactivity to casein, the major protein in dairy.

But that's just my 'rant.'
 
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TrudyGERD responded:
I second CalGal's rant. Both my daughter and I had a variety of different gluten tests and all "technically" came back negative. We can't tollerate gluten. We figured it out by eliminating gluten. It stinks, but it's unfortunately the way it is.

The fact that you were still symptomatic when you were down to only rice, toast and applesauce (all plain) suggests that maybe you do need to start looking at gluten. Granted, the bread does have small amounts of milk too (our tests for milk came back negligible as well but we react just as strongly to milk) so that could be part of it as well.

My take is that you have nothing to lose beside symptoms by eliminating gluten.
 
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Crystalbutterfli responded:
It's been five years since your post, I was wondering how things have been going for you. I too have IBS-D and other issues that started in 09. I am currently pregnant, which has made everything worse. I was wondering if they had ever checked your back for pinched nerves? I am wondering if this isn't what has been causing my issues as I did injure myself in the gym. Did anything help with the diarrhea? I can't take immodium because it doesn't work for me anymore. Any suggestions would be great.


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