Hello! Glad to see this forum online. I read many posts and although I am not happy anyone is ill... I was happy to see people post words and descriptions of what I am also enduring. I was so ill in the summer of 2010 I could not leave my house. I was diagnosed in December 2010 with LC and still suffer greatly. I am not on any medication. My gastroenterologist said there is no cure, no cause and no treatment other than my diet. He said I would learn what I could and could not eat. That leaves me pretty much with toast! Fresh carrots send me over the moon! I am not happy with the way I have to live. This plays on your mind an awful lot and if affects my husband too. I know everyone is tired of me saying I just dont feel good! It is good to know I am not alone in all these symptoms and not just crazy when I complain about pains and problems.
-
Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
New member
- Thread starter Louise1955
- Start date
Angrybird
Moderator
- Location
- Hertfordshire
Hello and welcome to the forum 
I think it would be worth having a look at our microscopic colitis sub forum (if you haven't already) as this also looks at LC and according to one of the posts I have read here there are a couple of meds out there that can potentially help: http://www.crohnsforum.com/forumdisplay.php?f=258. The folks here can at least have a chat with you about things to try to help ease symptoms. Also do the docs ever keep an eye on your vitamin levels? I am tagging our administrator David as I think he may have some suggestions as well.
AB
xx
I think it would be worth having a look at our microscopic colitis sub forum (if you haven't already) as this also looks at LC and according to one of the posts I have read here there are a couple of meds out there that can potentially help: http://www.crohnsforum.com/forumdisplay.php?f=258. The folks here can at least have a chat with you about things to try to help ease symptoms. Also do the docs ever keep an eye on your vitamin levels? I am tagging our administrator David as I think he may have some suggestions as well.
AB
xx
Hello! Yes, my gynecologist found my vitamin D level to be low and I have osteopenia now. I am suppose to take a megadose of vitamin D (50,000IU) for 8 weeks and then have more blood tests done. Thanks for responding. Cant wait to get more involved here and find out what everyone else thinks and does to help themselves. I have read about a few of the medications and am not eager to begin on them. I currently only take a prescription for my thyroid. Congrats on the pregnancy!
David
Co-Founder
- Location
- Naples, Florida
Hi Louise and welcome to the community! I'm so sorry to hear of your diagnosis and the suffering you're experiencing. My suggestions:
1. Get a new gastroenterologist. There ARE treatments for lymphocytic colitis. One of the more common medications used for it is Entocort which many respond well to.
2. Try cutting out gluten completely. There is a high overlap between LC and gluten allergy/sensitivity. If you want a systemized diet to help with this, I suggest the paleo diet.
3. Check out our microscopic colitis forum if you haven't already. There's additional ideas in there.
All my best to you
1. Get a new gastroenterologist. There ARE treatments for lymphocytic colitis. One of the more common medications used for it is Entocort which many respond well to.
2. Try cutting out gluten completely. There is a high overlap between LC and gluten allergy/sensitivity. If you want a systemized diet to help with this, I suggest the paleo diet.
3. Check out our microscopic colitis forum if you haven't already. There's additional ideas in there.
All my best to you
I do not believe I want to go on Entocort.. too many side effects. I have had 2 gastroenterologists already. They did not exactly agree... so where does that leave me?? Dont think insurance will allow what would be considered a 4th opinion. I start with a new PCP on the 24th. I have been tested for celiacs disease and I realize people with LC can have a false negative for that. One of the FEW things that I can eat when I am having a severe episode is toast. Toast is what I eat for days when I have appointments and need to be sure I can go out into public without incident. I reviewed your holistic diet and there is NO way I could eat all those vegetables or fruits. However,I will check out the paleo diet. I thought when I joined I was in the LC forum but it appeared to be mostly crohns sufferers. Potatoes are another safe food for me. Its a gamble on any other foods. Thanks for response.