Scared About Continued Weight Loss--Have Questions

[brookevale]

I have a cabinet full and two rubbermaid bins full of supplements from over the years. My husband and mom keep yelling at me to throw them out. Though I don't take them, I guess I'm holding on to the fact I spent so much money on them. Not only did none help, most did more damage. The only supplements I take now are vitamin d, calcium/magnesium, and probiotic. I am considering trying the glutamine again. We'll see. I definitely can't tolerate potatoes. Bananas make my female issue of itching worse but I will need to do something. Although, my recent bloodwork showed my potassium levels.

[Leah]

Have yo tried NOT taking the probiotics? Every time I have tried them, they made my symptoms worse. Others have had the same experience.

Leah

[DebE13]

I wonder if I have severe bile malabsorption going on. My doctors are so useless.

I hesitate to bring this up, because if you don't have elevated liver enzymes and signs of jaundice, it's kind of a long shot. I asked about liver enzymes to rule out primary sclerosing cholangitis (PSC), but your mention of bile-associated malabsorption issues raises some questions again. PSC is an autoimmune condition that can cause severe pruritus, and it is known to be associated with IBDs (especially UC — something like 70 % of PSC patients also have UC).

It's also possible, IMO, for MC to cause symptoms that can mimic many of the symptoms of PSC (but of course this is undocumented in the medical literature).

Tex

Wow, Tex I found this very interesting. As you know, my son has PSC. It all seems so related to have all these issues within the same family. I worry about him developing UC and am always talking food to him. He says I make him afraid to eat. I find, though, some of my habits are rubbing off on him.

Brooke, hang in there. It does take time- more than you may think. Be sure to get as much protein as you can. I also lost a lot of muscle too which I'm working on getting back. I went from 165 to 125 and scared a lot of my family members.

[UkuleleLady]

I agree with Leah, probiotics can cause more harm than good in a flare. I would not take them.

[Yoga girl]

Hi Brooke,
I can totally relate to your post. I have had severe weight loss as well (lowest was 113 lbs at 5'11"), and felt that I couldn't eat a thing. My doctor suspected SIBO (although I tested negative). I was put on Flagyl and Cipro for 2 weeks and felt a lot better.

I also went to a nutritionalist, who has worked with MC patients before. She said that gluten was the cause in each of these 3 patients. She recommended a supplement (which would be added to drinks and become a meal in itself). It was called Inflaminix "Sustain". I didn't end up trying it, as I want to eat foods more in their whole state. I am worried what may be in the supplement, that it could cause my GI system more stress (plus it's expensive).

My nutritionalist and Integrative doctor have both recommended Glutamine. 6 months ago, I could not take it as it made my symptoms worse. I am now able to take it (after using the antibiotics), and it has helped. I am, however, still on Entocort. My weight is up to about 122, which is still low, but I am feeling better and hopefully the upward trend will continue.

I hope you feel better soon!

[brookevale]

I am going to post a long overdue update in a separate post. But I've learned some of the suggestions here helped, some didn't make a difference, and some actually harmed me.