Newly diagnosed CC
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tlpeterson
- Posts: 3
- Joined: Sat Nov 24, 2012 1:29 pm
Newly diagnosed CC
I am 30 years old and have been suffering for months with crippling stomach pain and alternating constipation and D, although lately only D. I have had heartburn that is not controlled at the highest dose of Protonix. I have been suffering from chronic migraines (20-25 days a month) for over ten years now. I recently missed work for weeks because my boss was so concerned after an episode of near unconsciousness at work. Luckily, I have a great employer with a good salary continuance program. Last week I had my first colonoscopy and finally have a diagnosis: CC. It is great to finally know what is wrong so I can research it and deal with it. I would have to say that I was a little overwhelmed with my first gluten free trip to the grocery store, but I know it will get better. Finding this site has been super helpful and comforting! Thank you all for listening.
Hi and Welcome!
Sorry for the diagnosis but you have found one of the best places to gain all the knowledge you need to get your symptoms under control. Gluten-free is definitely the way to go! It is overwhelming at first mainly due to the fact that gluten seems to be in a lot of foods and trying to figure out which ones don't can be tough. I found eating gluten free has been pretty easy. Most of us have gone diary free as well. Within a few weeks, my stomach pains, bloating, nausea had pretty much disappeared, but the D still lingered. With MC, we often have other food intolerances as well. Diet is VERY important to obtain remission. I'm currently doing the Pepto protocol along with my diet changes. By the way, going dairy-free was harder for me than gluten-free. Some of us react to soy and eggs as well.
There is tons of information on this forum so read, read read! And always ask questions even if you think they're stupid questions. And you can never ask too many either.
I have heartburn as well and have to do a low-acidic diet. No chocolate, caffeine, tomato, citric foods/juices, etc.
I recommend purchasing Tex's book. He's our forum administrator and expert.
Some PPI's are known to trigger MC.
Good luck and read all you can as most doctors will not mention diet in regards to MC. Were you checked for Celiac as well? A lot of us have sent in samples to Enterolab to find out early on what are intolerances are.
Keep us updated!
Terri
Sorry for the diagnosis but you have found one of the best places to gain all the knowledge you need to get your symptoms under control. Gluten-free is definitely the way to go! It is overwhelming at first mainly due to the fact that gluten seems to be in a lot of foods and trying to figure out which ones don't can be tough. I found eating gluten free has been pretty easy. Most of us have gone diary free as well. Within a few weeks, my stomach pains, bloating, nausea had pretty much disappeared, but the D still lingered. With MC, we often have other food intolerances as well. Diet is VERY important to obtain remission. I'm currently doing the Pepto protocol along with my diet changes. By the way, going dairy-free was harder for me than gluten-free. Some of us react to soy and eggs as well.
There is tons of information on this forum so read, read read! And always ask questions even if you think they're stupid questions. And you can never ask too many either.
I have heartburn as well and have to do a low-acidic diet. No chocolate, caffeine, tomato, citric foods/juices, etc.
I recommend purchasing Tex's book. He's our forum administrator and expert.
Some PPI's are known to trigger MC.
Good luck and read all you can as most doctors will not mention diet in regards to MC. Were you checked for Celiac as well? A lot of us have sent in samples to Enterolab to find out early on what are intolerances are.
Keep us updated!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Welcome to our family. I don't know how much you have been reading on this forum, but obviously enough to start by going gluten free. Terri has made some great points. This is a complicated journey because all of us are slightly different as to what sets off our symptoms. Gluten, dairy, soy, and eggs are the common "inflammatory" foods. Then there are the obvious "irritants" that are just too hard on the system when you symptomatic (beans and fiber foods, acid foods like tomato products and citrus, raw fruits and veggies -even salad, maybe caffeine, whole nuts bother some...etc)
If you can afford to take the tests from Enterolab ( check out their web site), it's a great way to find out your intolerances. If not, the elimination diet is key. Some people choose to take things out one at a time, I got rid of most things at first ( while taking Entocort) and stuck to a healing diet of mostly proteins, cooked veggies, sweet potatoes, canned peached, apple sauce, rice and rice products, GF chex with almond milk.... until I was feeling significantly better. Then I tested the irritant foods back in one at a time and was able to add many back in in small quantities. Off the drug after 6-7 months.
Caution: some gluten free products can make your D worse because of all the other ingredients ( like xanthan gum). Better to stay away from processed foods until you have healed somewhat. I didn't touch GF bread until after 6 months.
You take care and please ask anything. Keep us posted on your progress and remember this process takes a lot of patience.
Leah
If you can afford to take the tests from Enterolab ( check out their web site), it's a great way to find out your intolerances. If not, the elimination diet is key. Some people choose to take things out one at a time, I got rid of most things at first ( while taking Entocort) and stuck to a healing diet of mostly proteins, cooked veggies, sweet potatoes, canned peached, apple sauce, rice and rice products, GF chex with almond milk.... until I was feeling significantly better. Then I tested the irritant foods back in one at a time and was able to add many back in in small quantities. Off the drug after 6-7 months.
Caution: some gluten free products can make your D worse because of all the other ingredients ( like xanthan gum). Better to stay away from processed foods until you have healed somewhat. I didn't touch GF bread until after 6 months.
You take care and please ask anything. Keep us posted on your progress and remember this process takes a lot of patience.
Leah
Hi,
Welcome to the group. As Terri mentioned, the GF diet should help in many ways, including eliminating those devastating migraines. Before I recovered, Migraines often prevented me from working, and other headaches were an almost constant problem. Since I've been in remission, (over 8 years, now), I've had only one headache, and that was because I bumped my head on a steel machine frame.
As Leah mentioned, in addition to the foods that trigger autoimmune-type reactions for us, there are other foods that irritate our intestines, and can help to perpetuate the inflammation simply because they are abrasive. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. As Terri mentioned, the GF diet should help in many ways, including eliminating those devastating migraines. Before I recovered, Migraines often prevented me from working, and other headaches were an almost constant problem. Since I've been in remission, (over 8 years, now), I've had only one headache, and that was because I bumped my head on a steel machine frame.
As Leah mentioned, in addition to the foods that trigger autoimmune-type reactions for us, there are other foods that irritate our intestines, and can help to perpetuate the inflammation simply because they are abrasive. Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
You have found the best place in the world for information and support.-
tlpeterson
- Posts: 3
- Joined: Sat Nov 24, 2012 1:29 pm
Thank you all for your responses. I met with a dietician this morning and she told me to do the low fiber, low fat diet with cooked veggies, etc. I asked about going gluten free and she said it was not a must, but I could if I want to. I am on day four of gluten free, it is going well, and I plan on continuing. She did mention that being gluten free may also help my migraines. They also started me on Enterocort to help my active state CC.
Also, my GI doctor said my heartburn is more of a functional than dietary problem because of the size (and type?) Of hiatal hernia I have. He said I will most likely need surgery to fix it, as the highest dose of Protonix isn't working.
This forum has already been so helpful, all I want to do is keep reading!
Also, my GI doctor said my heartburn is more of a functional than dietary problem because of the size (and type?) Of hiatal hernia I have. He said I will most likely need surgery to fix it, as the highest dose of Protonix isn't working.
This forum has already been so helpful, all I want to do is keep reading!
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome to the group
I too had heartburn due to hiatus hernia issue, I can recommend high doses of Vit D3, for quite a few people here with GERD/Hiatus hernia high doses of VitD3 has worked well.
if you do a search of the forum for GERD, there are quite a few discussions and info on what has worked best to alleviate/eliminate the symptoms....
the dietician sounds like a keeper!
I too had heartburn due to hiatus hernia issue, I can recommend high doses of Vit D3, for quite a few people here with GERD/Hiatus hernia high doses of VitD3 has worked well.
if you do a search of the forum for GERD, there are quite a few discussions and info on what has worked best to alleviate/eliminate the symptoms....
the dietician sounds like a keeper!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Welcome to the group. Interesting pre CC ailments and pains you are/were experiencing. I was actually on a rx sumatriptan for bad migrains.........at least once a week if not twice, for 8 or 9 months before my dx of CC I started experiencing terrible heartburn. I thought I was having a heart attack several times. I have neither anymore........now be it from going GF......I don't know but am not going to try and go back to gluten. I've actually convinced several people that do NOT have MC or other GI problems to try the GF diet. I don't have tendonitis in my wrist anymore, a friend doesn't have pains in her elbow anymore, another friend has now seen her rash disappear. I'm just saying.........GF may not be your only issue to address but it's not going to hurt you to give up that BAD diet we've been living for years. These folks here have turned my life completely around. Now that I am feeling so much better.........I just need to keep the weight off since eating again!!!!!! 
Good Luck with your journey and happy reading!!!!!!
Good Luck with your journey and happy reading!!!!!!Cathy
Welcome!! I'm 38 and was dx'd with LC three years ago. Just want to cheer you on and encourage the diet changes. I would ask for celiac disease testing too. It'll probably be negative, but it's worth knowing. Either way, you'll probably learn you're just as sensitive to gluten as the average celiac, maybe worse. I predict major improvement in your headaches if you are strict with the diet. My husband had no GI issues but frequent headaches and environmental allergies. Both cleared up significantly on the GF diet. Now if he gets accidental gluten (he's not as careful as me) he wakes with a headache the next day that lasts all day.
yeah, pretty positive that your headaches will subside eventually if you stay GF.
Entocort: It worked great for me, but be very aware of when your motility slows down ( almost C). That is when it's time to SLOWLY wean down to a lower dose. Keep doing that intil you are off completely. Many docs don't want you on it for more then 3 months, but most people here who have been on it, need it longer to sustain remission ( along with diet). It took me 6-7 months- most of which was a low dose to stop completely successfully.
Also, watch for reactions to dairy and soy. You may not notice it until your dose of Entocort is very low.
Good luck!
Leah
Entocort: It worked great for me, but be very aware of when your motility slows down ( almost C). That is when it's time to SLOWLY wean down to a lower dose. Keep doing that intil you are off completely. Many docs don't want you on it for more then 3 months, but most people here who have been on it, need it longer to sustain remission ( along with diet). It took me 6-7 months- most of which was a low dose to stop completely successfully.
Also, watch for reactions to dairy and soy. You may not notice it until your dose of Entocort is very low.
Good luck!
Leah