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Hello, I am so very desperate. I'm sitting here in such agony and I feel hopeless. This is long, but I tried to be informative and detailed.
My problems began about 3 1/2 years ago. It started with having an unexplained upset stomach...but it kept getting worse and worse.
-gnawing, burning, throbbing stomach
- intestinal cramping
- loose stools
- mucus in stool, often yellowish
- pain begins in early morning and lasts most of the day but gradually eases up by evening.
- Some mornings I can barely get ready for work and take care of my children because of the pain and constant trips to the bathroom
- weight loss (I lost 20lbs one summer and got down to 100lbs)
- no appetite
- tingling in fingers
- brain fog
- depression (usually very active and happy outside of an attack)
- "attacks" last usually 2 or more weeks...with the worst one being 6 weeks long. I've been to the emergency room twice for extreme pain.
I had blood work about 3 years ago and my igA was very high. Initially the nurse practitioner (never got to see the doctor) said I had Celiac Disease. I ended up having to switch doctors due to insurance. The new doctor did a colonoscopy and endoscopy with biopsy. He said my results did not indicate inflammatory bowel disease or celiac. I've done stool samples testing for parasites and IBD, HIDA scan for gallbladder, x ray, ultrasounds, thyroid...all negative. Then I did a breath test and it came back positive for a rare disease called sucrase-isomaltase deficiency. Basically, it means I lack an enzyme needed to digest sugar. I was SO thankful. I started taking a medication called Sucraid (a liquid enzyme replacement you take with every meal). However, it's over a year later and I am STILL having attacks. I was always skpetical about the diagnosis because most cases are in children since it is a congenital disease. Why would it come about in my late 20s? My GI doctor says he believe that yes I have it...but that it must be IBS as well. I just did a breath test this weekend for SIBO so I will see what that comes back as. I'm also going to go in today and do more blood work to test for Celiac again since it has been so long since my last panel.
What I find peculiar is that when I was pregnant in 2019 I felt great. I didn't have any attacks. This makes me wonder if it could be related to hormones, specifically progesterone. The attacks came back after giving birth.
Has anyone had any experience related to this? Any thoughts or advice? I have a baby and a 4 year old and I just struggle so much daily when I'm in the midst of an attack. I feel so hopeless and depressed. On bad days I don't know how I can possibly go on like this and just want to die. No medicine tends to help. I've tried probiotics. I've tried lactase for dairy. I'm currently on Xifaxan, an antibiotic usually prescribed for SIBO. Last time I took it during an attack it seemed to help...but then I just started a new attack last week.
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