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My Story - Hoping for advice or encouragement


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#1 RubySue78

RubySue78

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Posted 05 December 2019 - 06:59 PM

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Hello All-

I have been suffering with digestive issues from as long as I can remember. I distinctly remember the last time I ate an apple as a child, about 8 or 9 and the painful bloating and horrible smelling gas that I got from it. Then came the problem with milk, I would drink the carton of milk every day at school lunch then have a debilitating stomach ache that caused me to curl up in a ball every day after lunch period. This went on for about a month, then I started to throw up the milk. I lived in a small town and the only doctor available was a foot doctor who figured out I was lactose intolerant. So that was when I was 10. I would avoid milk for a while but then was drawn to it again and was able to drink it for short periods of time before the 18 to 24 hour stomach aches and pain, then I would stop. I have not had any dairy in my diet for the last 5 years, prior to that it was goat cheese of which I still could not handle.

I have always struggled with constipation to the point of plugging the toliet every time I went, my family made horrible fun of me so I would hold it for days compounding the problem. Sugar, wheat, corn made me bloat something terrible but we were raised on a farm and my mothers reasoning was "If the cows fart and they are healthy then you are healthy as well if you are gassy all the time." So I accepted it until High School and found out that I was NOT normal. I bloated on everything that had wheat, dairy, sugar of any type in it, any fruits and some veggies. I lived like this in a constant state of bloat, inflammation ( I could gain 8 pounds of inflammation weight overnight) for about 12 years. I haev always struggled with depression on top of all this... SIGH.... Then I became pregnant and my system went into overdrive on the constipation. I would go for 2 to 3 weeks without a BM, doctors just brushed it off. My son was born a month after my 20 bday. He has also had digestive problems all his life of which no one can diagnose. I have figured things on my own with his ADHD, and anger by removing certain foods and dyes from his diet. NOw that he is an adult he has found out why I did what I did with his diet, His digestive issues have gone into overdrive to the point of bloody stools.... SIGH.... I was told I had IBS when I was 25 and given a pamphlet and sent on my way.

I have done a lot of reserach and learning on how to care for myself. That is the only help I have gotten that has helped. I have cleaned up my diet, I have not had any processed food for about 12 years, I do not eat wheat or gluten for 10 years, I avoid corn, soy, dairy, nuts (minus coconut flour), all grains, onions, garlic and sugar like they are the plague. I also have a 12 year old daughter who has the EXACT same symptoms as I do. I have to limit her intake of sugar to no more than 9 grams a day and it cannot be xylitol (birch or corn derived) erythitol, stevia or monk fruit. We have found she does ok with some honey and coconut sugar. Otherwise she gets so plugged up and inflammed that she cannot poop for days. She is then really cranky and mean and we have to go to the ER because she starts to vomit undigested food.....

I was diagnosed with Hypothyroidism about 5 years ago and have finally found a med that my gut will actually break down and my numbers are finally optimal.

I am very limited to what I can eat: Grass fed beef, chicken and rabbit (pork causes me to get very sick, the corn in the meat causes me to bloat and feel like crap for days) Kabocha and butternut squash, sweet potoato limited to 3 ounces a day, pumpkin, tiger nut flour, coconut flour (limited to 8 grams a day) chia seed flour, pysllium husk (1/2 tablespoon), coconut oil and beef fat. Occassionally I will boil wax beans until they are almost translucent and eat them or try to eat some beets from my garden. I grow all my food that I can and we hunt for elk and deer and raise rabbits. I am 41, I am 5'8.5" and I weigh in at 109# currently. I am also orange or yellowish due to all the orange foods I am limited to.

About a year ago I started to get the bloat back and horrible terrible gas. My stomach felt like it was going to pop from swelling so much from the bloat, it would not go down or come up and no gas would move until hours later. Then my BM's started to change to black and tarrie (sp?) and then the burning pain in my stomach around my belly  button and on the right and  left. I went to the ER they did Ct AND MRI as well as ultra sound, found pelvic congestion syndrome but nothing else. I have to mention I have had terrible pain in my lowerback between my hips for 10 years now that gets worse when my stomach/intestines are inflammed or upset.

Nothing showed up. I was told that I had gastritis and to cut out all fats for a week. I did that and stools stayed the same but pain subsided a bit. I found that Aloe Vera water, marshmallow root and slippery elm Work wonders for calming these issues. I also fast for at least 15 hours a day and only eat 2 meals a day - I have noticed that that helps my system calm down.

Then the stool test came to check for H pylori as I do not have SIBO (eliminated that with Oregano oil and yes I retested it is gone). The test came back negative BUT very high for Calprotectin. My dr said IT IS CROHNS we have an answer. NOPE, Upper and lower scopes came back clear other than an inflammed stomach. all biopsies are normal.*a side note on the prep for these scopes I use Colyte to clean my system out. I fasted 8 hours with a small meal of cream of rice in the morning. The Colyte took 8 hours to work! 

SIGH..... So here I am again no answers still struggling, my children are in teh same boat and all I can do is limit their diets and give them the herbs I have found that work.

Is this really IBS?? One doctor told me it was a delayed emptying of my stomach even though I can eat good sized quantities of food?

The specialist for the Pelvic Congestion Syndrome told me that my case was unique because it is my gallbladder that is pressing on the main vein on my right side causing the congestion. But my gallbladder is fine, tests fine and looks great on UltraSound. My liver numbers are high unless I am taking Milk Thistle. What gives. Doctors just wanna run more HIGH DOLLAR tests or tell me I am crazy.

I hope there are others out there like me. It seems that I am getting more and more sensitive to foods and cannot afford to eliminate any more food. I am too skinny as it is, skinny and yellowish/orange. LOL

Intimacy with my husband can only happen if I do not have a stomach ache and if I have not eaten anything otherwise it is just too painful.

Anyone else out there strugglking with this? Is this just a maintain as best as you can and live life the best you can??







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