new....

[bren711]

hello all
having another bad flare up today. Dr prescribed lomotil ..can someone please give me some thoughts on that? are there any side effects?
I think I messed up yesterday by having hot cocoa and adding "vanilla international coffee flavoring" in fact I know I messed up.
also, is fatigue a big symptom of this MC and headache??

[tex]

Hi Brenda,

Sorry to hear about the flare. Here's the medical "poop" on Lomotil, and it's over-the-counter "twin", Imodium:

The active ingredient in Lomotil is diphenoxylate hydrochloride, and the active ingreditent in Imodium is loperamide hydrochloride - both are weak, long-acting opioids, and both are anti-motility medications, which means that they interfere with both normal and abnormal peristaltic contractions of the colon. They seem to be pretty much equivalent in effectiveness, though some individuals find that one works better for them than the other.

Loperamide, though related to opiates, does not cause addiction. Diphenoxylate, on the other hand, is a man-made medication, that at high doses can be addictive, because of its opiate-like, mood-elevating effects - that's why it's only available by prescription. It's also why atropine is added to Lomotil. IOW, if too much Lomotil is ingested, unpleasant side effects will occur, from ingesting too much atropine.

As is often mentioned on this board, these meds are quite safe for occasional use, and seem to be effective for most people why take them. On the other hand, taking anti-motility medications on a long-term, regular schedule, can lead to problems, and using them to treat diarrhea caused by ulcerative colitis, C. diff and other intestinal infections caused by bacteria, can lead to more serious inflammation and prolong the infections.

also, is fatigue a big symptom of this MC and headache??

Most definitely, yes! Most mornings when I got out of bed, I felt as though I had been hit by a truck, during the night. IOW, I felt like I had some kind of flu on steroids.

I hope this helps.

Tex

[JLH]

Absolutely, fatigue is a part of MC. I had no idea at first and kept complaining to my doc. She never gave me the answer......

[bren711]

thank you both for your inputs. your very educational and I am so grateful that I can come here and get an answer so quickly.
Brenda

[Lucy]

Hi again,
Yep, the fatigue takes about six months to gradually go away once you are TOTALLY off of gluten, so that your gut can heal to the extent that it's going to heal. My fatigue level was the last symptom to go, and it was awful!

Also, you need to have your B-12/folate levels checked if you've not already.
A B-12 level below 400 can cause neurological symptoms despite the lower end of the reference values being 200. Yours should stay above 400, at the minimum!
If you can get the order for it, have them check your vitamin D levels. The reason for this is because if it's low enough, you could get a prescription dose which would be much larger than what a person your age should ordinarily take on their own. This would get you where you need to be in a hurry.

You may have some malabsorption, not only from the colon where your M.C. is, but possibly also from your small bowel, whether or not you were diagnosed with celiac disease. One explanation for this is that these are submicroscopic changes rather than the completely flat villi of celiac disease.
This seems obvious given the fact that people can still show the appropriate things to that part of the small bowel being maladsorbed despite the negative celiac diagnosis. There's got to be damage their somewhere when this malabsorption through that area is shown via blood tests.

If you've not already had it checked, I suggest you try to add Thyroid screening to the other blood work. I lost my thyroid related to all this stuff about the time my M.C. was keeping me in the bed toward the end of many years of illness. I will always believe that if I'd started gf when my symptoms first started, that I'd still have my thyroid, and possibly not even need to take thyroid meds now. No way I'm going to be able to know that now, however.

Now, about the headaches. I had migraines for 30 to 40 years before I got off of gluten. They'd gotten to the point of being almost constant toward the end.
This was probably my earliest symptom that I remember.

For the longest time after getting off of gluten, I never had another one. Then, whenever I'd accidently get some nitrite/nitrate from eating a preserved meat or msg, etc., I'd get one, but even then, it would usually be minor.
Apparently, the increased permeability of our guts tends to be related to a tendency to have a more permeable blood brain barrier, so it's my hunch that this is why some of the symptoms tend to effect our brains, particularly with migraines. These excitotoxins just flow right on through that barrier into our brains. Migraines are a HUGE time steeler, not to mention how uncomfortable they are! Migraines are very common to celiacs as well, before they are given the correct treatment of a gluten free diet.

Hope this helps. I'm going to post about the potatoes at Outback on a separate post on the main message board in a minute so that all may see it.

Yours, Luce