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ZenDen
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05 Aug 2016, 12:21 pm

kraftiekortie wrote:
I get a check-up at least once a year.

I hurt my knee running one day; so I'll have to go to a doctor soon.


Will your doctor do a colonoscopy then???

Because of your Mom's history, this is what I was referring to.



Noca
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05 Aug 2016, 12:40 pm

Severe pi-IBS-D, so sick I haven't had a solid piece of food since last June, and haven't been able to break down a solid raw green vegetable in almost 3 and a half years.

Doctors have been generally useless and the cause of so much stress for how little effort they have put forth and how sick they have let my gut get. Only cholestyramine helps moderately when I am on an all liquid diet with mixed ground fibre.

Im currently starting to make homemade milk and water kefir and I'm also taking 2 doses of VSL#3 a day. I'll keep adding every fermented probiotic sources I can think of until I see some improvement.

I currently have no life or future whatsoever because of how sick I am everyday. :(


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Your neurodiverse score: 150 of 200
Your neurotypical score: 51 of 200

officially diagnosed with Asperger's as of 09/11/15

Reassessed 04/11/16
DSM-V: ASD level 2 with Social Communication Severity: level 2, Restrictive Repetitve Behaviour: level 2

ADOS-2 classification: Autism


eggheadjr
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05 Aug 2016, 2:09 pm

- Gallbladder removed
- Severely gluten intolerant, likely celiac (official medical diagnosis)
- Casein intolerant
- IBS
- multiple drug allergies and intolerances

And my cousin who has Asperger's has Crohn's.

:(


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ZenDen
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05 Aug 2016, 2:10 pm

Noca wrote:
Severe pi-IBS-D, so sick I haven't had a solid piece of food since last June, and haven't been able to break down a solid raw green vegetable in almost 3 and a half years.

Doctors have been generally useless and the cause of so much stress for how little effort they have put forth and how sick they have let my gut get. Only cholestyramine helps moderately when I am on an all liquid diet with mixed ground fibre.

Im currently starting to make homemade milk and water kefir and I'm also taking 2 doses of VSL#3 a day. I'll keep adding every fermented probiotic sources I can think of until I see some improvement.

I currently have no life or future whatsoever because of how sick I am everyday. :(


Please read and think about this:

The plan I used was in a book called: "Breaking the Vicious Cycle" (Intestinal Health Through Diet) by Elaine Gottschall B.A., M.Sc.What this book does is lead you through small steps, to define and accommodate your sensitivities. Although my specific ailment was/is ulcerative colitis, this book can address many digestive illnesses.

The Specific Carbohydrate Diet starts by eliminating any and all foods that are known to have caused, or can cause problems...what you have then is a very bland and limited diet. Then, according to your individual sensitivity, you begin to add items slowly, one-at-a-time, with enough time in between to judge, to create a manageable, healthy, and appetizing diet....not big steaks and lobster perhaps, but a big improvement.

This book tells you how to substitute more easily digested foods (and lists them) in place of problem foods. Also, toward the back, there are many good recipes listed that use "more calming" foods, covering everything from entrees to deserts.

Let me know if you can't find it. Good luck buddy. :)

EDIT to add: Here is an online example of this diet:

"The allowed carbohydrates are monosaccharides and have a single molecule structure that allow them to be easily absorbed by the intestine wall. Complex carbohydrates which are disaccharides (double molecules) and polysaccharides (chain molecules) are not allowed. Complex carbohydrates that are not easily digested feed harmful bacteria in our intestines causing them to overgrow producing by products and inflaming the intestine wall. The diet works by starving out these bacteria and restoring the balance of bacteria in our gut."

This may give you a sense of direction this diet takes. :D



screen_name
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06 Aug 2016, 7:37 am

randomeu wrote:
I have Gastro parisis, and have a stomach pacemaker for it.

i was also born with a unique eating problem, seriously, there was an entire medical discussion between loads of doctors and surgeons about me.


basically, theres a valve on your stomach, it lets food out or in (one at the top lets them in, bottom one lets them out) mine had a second one growing into it, which means i couldn't actually process food, they did every test they could think of, they couldn't figure it out, until they operated on me to do a stomach bypass and discovered the whole valve thing, they instead removed the valve and i was okay for a year, but then the whole gastro parisis thing started after that year, and the hospital stuff began again. basically had the whole stomach valve thing from when i was about 8, till i was 10, then it was a year, i went to high school, got the gastro parisis thing, till i was 14 then got the pacemaker. means i still can't eat some foods, i don't do things like wheat very well, and sometimes i just can't tolerate random things haha.

im kind of glad they discovered it in that first one as i was kind of....dying....slowly. my body just couldn't take in food, so i was getting thinner and thinner and thinner, wasting away, i don't know how my parents managed to keep calm and normal around me, but they did (but not when i wasn't present)



I'm glad they finally figured the valve thing out. That's scary.

Gastroparesis is what I assumed I'd end up. I just keep getting other things lobbed on. The EoE shocked me. My GI said that if he gave me a gastric emptying test today, he's certain it would turn up gastroparesis, but he needs to figure out and heal the colitis first and then see where we stand on the gastric emptying test.







I was hoping I could find someone with EoE here. I know it's pretty uncommon, but it's a b***h to live with. I'd love to hear how people go back to eating foods or if the end up needing a feeding tube, etc. (And if I do have gastroparesis a feeding tube could solve two of my problems. I was practically begging the doctor for one the other day. I can't eat!! !)

So, to the other person who mentioned how people say, "oh, you've lost weight, you look great" or whatever. I'm frustrated with that too. I just want to say, "no, this isn't great, I'm really sick".

But, then what usually comes out is...nothing...just a smile and nod or something.


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kraftiekortie
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06 Aug 2016, 7:48 am

Maybe it's because the person doesn't know that you have gastroparesis and your other conditions, or at least that it can cause weight loss.

Just like one should get get angry at someone who doesn't know much about autism if they make some remark about autism. The key is educate.

How are you feeling today?



dianthus
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06 Aug 2016, 3:01 pm

This is why people just shouldn't comment on someone's weight...even if they think they are paying a compliment. Losing weight is so often a sign of illness. And no one who is dealing with an illness should feel obligated to explain it to anyone.

I heard so many rude comments when I was younger about how thin I was. I just couldn't gain weight. I would eat a little and feel full, and I always had this reflux/spitting up problem which doctors couldn't figure out.

I think I probably have gastroparesis caused by low stomach acid, and/or a lack of digestive enzymes. And I would not be surprised if I have a bezoar. Typically bezoars are caused by fibrous foods not breaking down...which is probably why I've never been able to eat whole fruits or vegetables without feeling sick - too much fiber.

I haven't tried an HCL supplement yet...I keep meaning to but forget to order it. But I know my stomach feels better when I drink soda regularly. The acid in soda can mimic the effects of stomach acid...and Coca-cola has actually been used to dissolve bezoars.

The interesting thing is I've always been such a picky eater, and I just KNEW certain things didn't agree with me, and other people would criticize me for it and try to tell me what I should or shouldn't be eating...but every time I research my gut problems, or other health issues, I find very good reasons why I've been so picky and chose to eat the way I did.



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06 Aug 2016, 5:46 pm

screen_name wrote:
randomeu wrote:
I have Gastro parisis, and have a stomach pacemaker for it.

i was also born with a unique eating problem, seriously, there was an entire medical discussion between loads of doctors and surgeons about me.


basically, theres a valve on your stomach, it lets food out or in (one at the top lets them in, bottom one lets them out) mine had a second one growing into it, which means i couldn't actually process food, they did every test they could think of, they couldn't figure it out, until they operated on me to do a stomach bypass and discovered the whole valve thing, they instead removed the valve and i was okay for a year, but then the whole gastro parisis thing started after that year, and the hospital stuff began again. basically had the whole stomach valve thing from when i was about 8, till i was 10, then it was a year, i went to high school, got the gastro parisis thing, till i was 14 then got the pacemaker. means i still can't eat some foods, i don't do things like wheat very well, and sometimes i just can't tolerate random things haha.

im kind of glad they discovered it in that first one as i was kind of....dying....slowly. my body just couldn't take in food, so i was getting thinner and thinner and thinner, wasting away, i don't know how my parents managed to keep calm and normal around me, but they did (but not when i wasn't present)



I'm glad they finally figured the valve thing out. That's scary.

Gastroparesis is what I assumed I'd end up. I just keep getting other things lobbed on. The EoE shocked me. My GI said that if he gave me a gastric emptying test today, he's certain it would turn up gastroparesis, but he needs to figure out and heal the colitis first and then see where we stand on the gastric emptying test.







I was hoping I could find someone with EoE here. I know it's pretty uncommon, but it's a b***h to live with. I'd love to hear how people go back to eating foods or if the end up needing a feeding tube, etc. (And if I do have gastroparesis a feeding tube could solve two of my problems. I was practically begging the doctor for one the other day. I can't eat!! !)

So, to the other person who mentioned how people say, "oh, you've lost weight, you look great" or whatever. I'm frustrated with that too. I just want to say, "no, this isn't great, I'm really sick".

But, then what usually comes out is...nothing...just a smile and nod or something.



actually about weight, an interesting side effect of mine is that i can't gain weight that well, like im still stick thin even though i eat a lot (well a bit more then i should) but i can lose weight really easily, like i was about....60ish one time and i dropped to 55 (this was a while ago) by taking a shower! seriously i weighed the first one right before the shower, then the second one right afterwards....weird.


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You are very likely neurodiverse (Aspie)


Officially diagnosed 30th june 2017


kraftiekortie
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07 Aug 2016, 3:23 pm

You mean kilograms, right?



screen_name
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14 Aug 2016, 8:29 am

kraftiekortie wrote:
Maybe it's because the person doesn't know that you have gastroparesis and your other conditions, or at least that it can cause weight loss.

Just like one should get get angry at someone who doesn't know much about autism if they make some remark about autism. The key is educate.

How are you feeling today?


I don't get upset at others. I didn't mean to imply. More of a ...if they only knew...sort of thing.


And currently my stomach hurts like hell. I finally got some allergy tests done, so hopefully that will give me some quicker answers.

I'm also sort of mad at the world (which is really unlike me), but it comes from watching loved ones with normal diseases get prompt and appropriate medical care where in some cases I have to wait YEARS. I'm not prescribed pain medication for intense pain because it takes them months to find the cause. And now I can't eat foods I like. I'll never eat ice cream or pizza again. And I'm grumpy. I'm just grumpy with the world. :(

And staying in bed.


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I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well


kraftiekortie
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14 Aug 2016, 9:52 am

I can understand that. I'd be angry at the world, too.

I'm sort of angry because I have a minor knee injury.

Just think of the Appalachian Trail.



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14 Aug 2016, 9:55 am

Thanks. And sorry about your injury.


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I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well


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14 Aug 2016, 10:00 am

I've had bad undiagnosed gastro issues since I'm 18. Compare to some of you guys, I guess I get off easy...

Mine primarily includes very bloated and painful stomach, where many days I cannot pass stools, and when I can they are very hard and thin, indicating some blockage. But it seems to be episodic, so sometimes it's fairly normal and pain free. When I am bound up I have very bad burning pains like I just ate something really spicy yesterday and this pain wont go away for days or even weeks. I feel a constant urge to go #2, but there's no #2 to be had...

I often get very weak too, and I think it may be because of my digestive issues. Years ago following an episode, I'd eliminate all sorts of mucus for days, but that was when things were actually better for me in my digestion.

I have found I have to be very careful of what I eat, and take a few different things to try and help me too. I've found I do best on very low fats and dairy, no seeds, nuts or raw vegetables (except maybe carrots and like a single leaf of iceberg lettuce on a sandwich maybe), cant have even too many cooked vegetables, can't do sugar, bleached flour isn't friendly to me (or most people), and I try to drink plenty of water to keep things going.

If I had medical coverage or enough money I'd go to get checked out. I may next year because I don't want to out I have something serious. Though if I were to, I'd get medical marijuana in NJ for that, so it wouldn't be the worst thing in my life :lol:



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14 Aug 2016, 10:59 am

How are the kids?

I hope you can go out some if it isn't too hot.

Think of it this way: I've seen people with wheelchairs and oxygen masks go on cruises.



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14 Aug 2016, 1:27 pm

kraftiekortie wrote:
How are the kids?

I hope you can go out some if it isn't too hot.

Think of it this way: I've seen people with wheelchairs and oxygen masks go on cruises.


My kids are fine. I'm staying with my parents while my husband is away. They have a pool.

(I do hate the heat though) pools help :wink:


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So you know who just said that:
I am female, I am married
I have two children (one AS and one NT)
I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well


josh338
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14 Aug 2016, 1:40 pm

Food allergies, GERD, IBS if I eat wheat (but not celiac, tests have been negative), lactose intolerance -- perhaps the cause of the frequent stomach aches I had as a child?