Hello everyone. I'm pretty new to this board, but not new to LC. It took 3 years to be diagnosed. That was about 7 years ago. I still can't get a grip on it. There are more symptoms, restriction and frustration. Thank God for the support of my family. I now have Fructose Malobsorption, a constant pain, pressure in my bottom that intensifies when standing and walking. Doctors can't figure out if it's caused by the inflammation from LC or spine issues. I have a rash that appears on my back, neck, legs and scalp. Many bathroom trips. Stomach pain. Either I can't sleep or I can wake up. I'm normally pretty good at keeping my spirit up and my mind focused but the last couple of weeks, that has been a real struggle. I'm dairy, gluten and fructose free. Following a modified formap diet. I eat no processed food. Drink bone broth, take supplements and budesonide. And as the title of this post says, I really miss the good ole days before this crappy disease.
If you got this far into my post, thanks for listening to my vent.
Miss the good ole' days
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Carla,
Welcome! It's good to see a post from you. It sounds as though you might have histamine issues (like many of us), but the FODMAP diet should cover most high-histamine foods. The rash is highly likely to be a symptom of histamine issues, though. One thing that the FODMAP diet does not address is histamine increases caused by storing food at refrigeration temperatures. Most of us have to freeze perishable food (including any leftovers) in order to keep the histamine level from increasing. This especially apples to foods such as fish, chicken, bananas, etc. Bananas, for example have to be peeled and frozen in ziploc bags just before they are ripe. As they ripen, the histamine level rises rapidly if they are not frozen.
If you're still having symptoms after all the precautions, consider that you may have become soy sensitive. That happened to me about 6 or 7 years after I originally tested negative to soy.
Again, welcome aboard. And yep, we all miss the good ole days.
Tex
Welcome! It's good to see a post from you. It sounds as though you might have histamine issues (like many of us), but the FODMAP diet should cover most high-histamine foods. The rash is highly likely to be a symptom of histamine issues, though. One thing that the FODMAP diet does not address is histamine increases caused by storing food at refrigeration temperatures. Most of us have to freeze perishable food (including any leftovers) in order to keep the histamine level from increasing. This especially apples to foods such as fish, chicken, bananas, etc. Bananas, for example have to be peeled and frozen in ziploc bags just before they are ripe. As they ripen, the histamine level rises rapidly if they are not frozen.
If you're still having symptoms after all the precautions, consider that you may have become soy sensitive. That happened to me about 6 or 7 years after I originally tested negative to soy.
Again, welcome aboard. And yep, we all miss the good ole days.
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.
Hey Carla,
This disease really stinks!! I eat everything from frozen or immediately from the store. Once you get in the hang of it and buy a bigger freezer, its pretty convenient. When I was just starting my diet, I took a daily zyrtec liquid gel. You have to be careful of the inactive ingredients.
Be careful of bone broth, the longer I cooked it, the worse the symptoms were for me.
This disease really stinks!! I eat everything from frozen or immediately from the store. Once you get in the hang of it and buy a bigger freezer, its pretty convenient. When I was just starting my diet, I took a daily zyrtec liquid gel. You have to be careful of the inactive ingredients.
Be careful of bone broth, the longer I cooked it, the worse the symptoms were for me.
Martha E.
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Hi Carla,
Sorry to hear that you are still suffering a range of symptoms even after restricting your diet. Yep. We all long for our old comfort foods and the flexibility we once had to eat anything we wanted. I agree with Tex that there is obviously something else causing these ongoing issues. It's worth continuing to work with a nutritionist, alternate GI to see if they can identify any other issues as unfortunately we can have multiple issues occurring at once which can mask each other. I pray that you will get greater clarity in the near future that will help you master these issues
Sorry to hear that you are still suffering a range of symptoms even after restricting your diet. Yep. We all long for our old comfort foods and the flexibility we once had to eat anything we wanted. I agree with Tex that there is obviously something else causing these ongoing issues. It's worth continuing to work with a nutritionist, alternate GI to see if they can identify any other issues as unfortunately we can have multiple issues occurring at once which can mask each other. I pray that you will get greater clarity in the near future that will help you master these issues
Irony or not....but I was Dx in 2012 with LC....but didn't understand what to start doing as far as healing until 2015...I am almost 3 years into healing and last year was a heck of a year with high histamine issues....big wheals would appear on my buttocks, and creases in skin from sitting, and on my hand of all places....I had to double up my antihistamine for a while in order to get the histamine out of my system...I take a daily Zyrtex (generic pill) now...I had stopped taking an antihistamine early last year....well that was the wrong thing to do apparently!
Pressure Urticaria is what I ended up with and if I'm not careful freezing my foods right away and trying to eat them a couple days later I get histamine issues...mucous, itching behind the ears, bright red hands,...just annoying symptoms.
So perhaps you have a bucket load of histamine you need to start kicking to the curb as much as you can
Take care
Erica
Pressure Urticaria is what I ended up with and if I'm not careful freezing my foods right away and trying to eat them a couple days later I get histamine issues...mucous, itching behind the ears, bright red hands,...just annoying symptoms.
So perhaps you have a bucket load of histamine you need to start kicking to the curb as much as you can
Take care
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
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Carla Jean
- Posts: 2
- Joined: Wed Nov 15, 2017 11:41 pm
- Location: Oregon
Well, Thanks everyone for the great response to my post. You are all appreciated.
I'm not convinced that histamines from leftovers is my issue. I rarely eat leftovers. I ussualy do freeze anything left from a meal. My diet is pretty restricted and I get so tired of eating the same thing in a row. That being said, I double checked my food log and there was 1 day that I ate leftover chicken, but that was after the rash started. So, it might have irritated it. But I'm not sure it is the base cause. I will definitely from this point forward, make more of a conscious effort to freeze ALL left overs.
I'm still dealing with the rash. It is worse at night. Making sleep pretty difficult. It is always on my back and scalp, but shows up in other random spots. Pharmacist suggested it could be the Budesonide. I put a call into my doctor. I have an appointment tomorrow.
Boy does this disease push the limits of patience. I find I'm giving myself more 'Chin up Buttercup' pep talks then usual.
Again, Thanks all!!
I'm not convinced that histamines from leftovers is my issue. I rarely eat leftovers. I ussualy do freeze anything left from a meal. My diet is pretty restricted and I get so tired of eating the same thing in a row. That being said, I double checked my food log and there was 1 day that I ate leftover chicken, but that was after the rash started. So, it might have irritated it. But I'm not sure it is the base cause. I will definitely from this point forward, make more of a conscious effort to freeze ALL left overs.
I'm still dealing with the rash. It is worse at night. Making sleep pretty difficult. It is always on my back and scalp, but shows up in other random spots. Pharmacist suggested it could be the Budesonide. I put a call into my doctor. I have an appointment tomorrow.
Boy does this disease push the limits of patience. I find I'm giving myself more 'Chin up Buttercup' pep talks then usual.
Again, Thanks all!!
I guess I should also made it clear that it isn't only my foods that may have caused my rashes.....it could have been numerous things from the air I breathe (last Fall was a doozy for things floating in the air, and spring like conditions are beginning) to the things I put on my body - lotions, shampoo, conditioner, soap....the supplements I take daily (although I am hoping they aren't causing any excess histamine).
I don't take medications, but I'm sure they could have an effect on my system and create an unhappy systemic reaction on the skin.
Do take care and I hope you find what is causing your uneasiness!
I don't take medications, but I'm sure they could have an effect on my system and create an unhappy systemic reaction on the skin.
Do take care and I hope you find what is causing your uneasiness!
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007