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Hello All - New to the Forum

Hi all,

After two years of digestive issues, I found this forum yesterday. It's wonderful to see all of you coming together and providing support for one another. It really is so difficult to find that when no one in your everyday life has an idea of what you're going through.

My story is a long one and I'll spare you all the details. In a nutshell, I'm undiagnosed even though I've had multiple tests done (blood, ultrasound, CAT scan, upper endoscopy), which have all shown various levels of issues without presenting a clear diagnosis. I have a colonoscopy scheduled for next Friday, and I'm cautiously optimistic about what that will reveal.

In terms of lifestyle, I had actually essentially eliminated all of my symptoms by adopting many principles of the Paleo diet. A year ago I was a bit of a mess. I was in the lab working on my master's thesis while trying (unsuccessfully) to look for a job for when I graduated and dealing with persistent digestive episodes. I adopted the Paleo diet, began to feel better, ended up eventually finding a great job, and until a week ago felt better and happier than I had in years.

I don't know what happened last week. But I began experiencing some of the worst abdominal pain and pressure that I could ever imagine. It was centered around anything I ate -- anything at all gave me unbelievable pain non-stop. I initiated and have up till now remained on a liquid-only diet (Boost Plus), and it's helped quite a bit with the pain. But for some reason, the liquids really aggravate my system. I can hear my stomach/intestines twisting and moving around and whining for about an hour following having a shake.

I'm honestly feeling more depressed than I ever have before, and it's primarily linked with the uncertainty of what to do now with my future/career. I really like my job and want to keep it, but I don't feel that the environment is conducive to the symptoms I have, and I'm coming to realize I can't ever expect the symptoms to stop permanently. I've been thinking of leaving this job, and applying to doctoral programs and getting back into the lab I did my master's at. That was a fairly low anxiety environment in terms of dealing with digestive issues. Doing so, I'd be giving up a good chunk of my current income, though. Anyone here have experience in the life sciences? Would love to hear another perspective on this.

This post ended up going longer than I intended, and I apologize for that. Once I started writing, it just kept flowing! Thank you for having me as a part of this amazing community. I look forward to meeting each and every one of you, and learning more about your stories and health struggles.

Thanks for reading,

Mo
 
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Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

I am sorry to hear you are still struggling to get a diagnosis, I will be keeping fingers crossed that the upcoming scope can get you some answers. If you have a lot inflammation going on inside that could explain the pain and why it lessens when the liquids only. Out of interest what have the previous tests indicated? What other symptoms have you been experiencing? We do have an undiagnosed forum that is certainly worth checking out to also have a chat with the folks here: http://www.crohnsforum.com/forumdisplay.php?f=75.

There is a lot of helpful info and support here so do have a good look around and please keep us updated on how you get on.

AB
xx
 
Hi Angrybird,

Thank you for the welcome and for the kind words. I hope the upcoming scope provides some answers as well, even if the answers aren't necessarily good -- I just really want to know what's going on!

My results for the ultrasound and blood tests all came back normal. The upper endoscopy showed considerable inflammation in my esophagus and stomach. The GI actually thought I had Barrett's Esophagus and/or Eosinophilic Esophagitis just by looking, but both came back negative. The CAT scan revealed swollen lymph nodes and inflammation in the ileum.

In terms of symptoms, I have: muscle spasms, pressure, pain, and belching. Prior to this week, only the belching had been an issue for the last few months. I used to have persistent heartburn as well, but that was solved when I started following some principles of the Paleo diet, and so have stopped taking PPI's. I take supplemental digestive enzymes with meals, which I've found provide me with some relief, so generally I think I just have weak digestion. Also this week I've started experiencing quite a few mental health symptoms such as anxiety and depression. I feel that whatever I have is escalating to a new level and is making me reassess everything.

Thanks for pointing me towards the forum for other undiagnosed folks. I will check it out.

Mo
 

Angrybird

Moderator
Location
Hertfordshire
Hang in there hun, another thing to ask your doc to check your vitamin levels. If you have deficiences in this area (such as a low B12) it could explain in part how you are feeling mentally at the moment.
 

Gianni

Moderator
In terms of lifestyle, I had actually essentially eliminated all of my symptoms by adopting many principles of the Paleo diet.
May I ask which principles your diet included? What was a typical day of food for you? Did you get lazier with your diet as time went on? Did or do you currently take any supplements? Do you keep a food log? (sorry I'm a diet enthusiast).

As angrybird suggested, I think it would be a good idea to get a Vitamin Panel done too see how your Vitamin D and B12 levels are, amongst others.

Hope you find some answers soon, I'm sure more members will chime in soon.

Gianni
 
Thanks Angrybird and Gianni for the suggestion of getting a vitamin panel done. I will definitely follow up on that.

Gianni -- with regard to the Paleo diet, I focused on the principle of eliminating processed foods, and having more natural wholefoods. My definition of processed was that if it contained ingredients I didn't recognize, I would generally try to avoid it. Also, whenever possible, I tried to go organic. A typical day for me would be:
  • Breakfast: 3 eggs scrambled in 2-3 tbsp of high oleic sunflower/safflower oil sprinkled with salt, pepper, and turmeric
  • Lunch: Salad composed of romaine lettuce, tomatoes, onions, almonds, grilled chicken, and topped with italian dressing
  • Snack: Handful of almonds
  • Dinner: Meat (chicken/goat/lamb) cooked in a south asian style curry (base of the curry was usually tomatoes, onions, oil, garlic, ginger, salt, pepper, turmeric). This usually followed by a large bowl of plain kefir with half a cup of berries.

For supplements, I take a multi-vitamin and 1 tsp fish oil daily.

I did get a little bit lax in my requirements for this diet recently. I started allowing myself to have some gluten-free treats on the weekends, like rolls, cookies, or brownies. I've cut all these back out ever since the pain started.

I think from now on I'm going to focus more on having foods that are easier to digest. Maybe for lunch instead of the salad, I'll start having some white rice topped with some baked veggies and extra virgin olive oil, being sure to cook both the rice and veggies till they're soft. I'm also thinking about cutting out almonds altogether and replacing with a lighter, easier-to-digest snack, but I haven't really figured out what yet.

How about yourself? Do you follow a specific type of diet, or play it by ear? Any tips you picked up in your experience?
 
hello MoRymes and welcome to the forum. It looks like you already gotten some nice suggestions. I try to have a gluten free diet and eat meat and potatoes really cooked veggies. I also keep a food diary and write down my trigger foods. I am still a student when it comes to diet and trying to figure things. I wish you the best of luck! :)
 

Gianni

Moderator
Breakfast: 3 eggs scrambled in 2-3 tbsp of high oleic sunflower/safflower oil sprinkled with salt, pepper, and turmeric
Lunch: Salad composed of romaine lettuce, tomatoes, onions, almonds, grilled chicken, and topped with italian dressing
Snack: Handful of almonds
Dinner: Meat (chicken/goat/lamb) cooked in a south asian style curry (base of the curry was usually tomatoes, onions, oil, garlic, ginger, salt, pepper, turmeric). This usually followed by a large bowl of plain kefir with half a cup of berries.
mmm what delicious meals. I guess the only thing I would suggest is to make sure your meats are organic. Commercial meats, I believe, are detrimental to health.

For supplements, I take a multi-vitamin and 1 tsp fish oil daily.
I am not a fan of multi vitamins as they give people a false sense of security. People think they are getting plenty of vitamins but because there are sooo many vitamins, the companies can only fit so much of each vitamin into the pill and they just aren't nearly enough. For example a normal multivitamin may have 20mg of b3 while a b3 supplement will have 500mg, 20mg just isn't enough. So getting you vitamin levels tested and then purchasing supplements based on results is more effective.

I did get a little bit lax in my requirements for this diet recently. I started allowing myself to have some gluten-free treats on the weekends, like rolls, cookies, or brownies. I've cut all these back out ever since the pain started.
It is very common to become lax in diets, but it is so important to stay true to your diet and I'm sure you realize this now.


I think from now on I'm going to focus more on having foods that are easier to digest. Maybe for lunch instead of the salad, I'll start having some white rice topped with some baked veggies and extra virgin olive oil, being sure to cook both the rice and veggies till they're soft.
If you are having pain because of fiber then sure go for softer foods but I would suggest trying to stick, as much as possible, to the diet that worked for you in the past. If you were used to including plenty of raw vegetables you should look into juicing. I am a major fan of juicing because it removes fiber yet retains the natural state of the produce. Read about why I love juicing so much here


I stick to a vegan diet mainly because I believe nutrition is key to dealing with this disease and I feel like the modern meats of today just aren't healthy. I have found great success in this diet. You can read around in the diet fitness and supplements sub forum and you can probably see plenty of posts by me. Anyways, get those vitamin levels tested and read into juicing:)

Gianni
 
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