shereebailey83
Junior Member
Confirmed HFI at 3 years old via Liver Biopsy
Posts: 61
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Post by shereebailey83 on Mar 21, 2012 3:12:51 GMT -5
Hello all, hoping I can get some feedback on everybody's hfi symptoms... I got rushed into hospital with severe abdominal pains in December. I was diagnosed with pancreatitis. They couldn't tell me what was causing it. I have been back to hospital 8 times since then with severe upper abdominal attacks, bloating and stomach aches after I eat anything... Anyway I have been in hospital for 7 days I've had a ultrasound, ct scan, MRI and hida scan but no gallstones are present... My liver has been enlarged and I'm worried that something in my hfi has cHanged or it something altogether different (celiac or chrone or lactose) anyone else had similar??
Cheers
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esmee
Full Member
gluten, lactose, fructose, histamine, and salicylate intolerant
Posts: 236
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Post by esmee on Mar 22, 2012 11:49:54 GMT -5
Fats are generally a big trigger for pancreatitis, or once pancreatitis is present fats are very hard to digest and seem to exacerbate it. You may want to try reducing your fat intake for a while if that is possible. I know this can be very difficult to do on an HFI diet. I do wonder if fructose ingestion in an HFI person can damage the fatty acid metabolic pathways. I am not officially diagnosed with HFI but am very fructose intolerant and I personally have a lot of trouble digesting fats. My gall bladder is also normal with no stones. I was never diagnosed with pancreatitis. No doctor has been able to figure out what is causing my problems with fat.
What does your normal diet look like?
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Post by ukbill on Mar 22, 2012 23:49:50 GMT -5
How bad did you get before you were diagnosed? I am wondering if what you have is the result of damage to your liver as a child / adult undiagnosed? It could also be that you are still getting far too much Fructose in your diet. I know you might think that you are not having reactions so you are safe.. this is not the case. High levels of Fructose can be hidden by the masking effect of Glucose from either eating contaminated pure Glucose or from rice and pure starches (white flour or similar) assuming the fructose load is low.. you will not get a reaction but liver damage will be caused. A persistent low dose of Fructose will cause problems to your liver, if the dose is higher than your liver and kidneys can deal with and greater than the body's ability to repair itself. Wishing you all the best and a speedy recovery  Keep smiling  |
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Post by adrian on Mar 23, 2012 11:40:58 GMT -5
I've had 2 episodes of pancreatitis but before I knew about my HFI. Both times were extremely scary, so intense I thought I was going to be dead. The mechanism and causes of pancreatitis in the medical world is still an unknown mystery. The only treatment for it is not to eat or drink anything while the symptoms are occurring, meanwhile you should be getting fluids intravenously until the inflammation subsides. If you get it once, then there is high chance it will reoccur, so if you begin to feel symptoms of it be sure to have plans ready for the hospital, as it can be a life threatening condition.
BTW, I also had a very enlarged liver, but since discovering I had HFI I decided to go on a high fat ketogenic diet...I've been on this diet for a year now and my liver has shrunk by 15% and functioning pretty much normally. I'm totally against avoiding fats especially for us.
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esmee
Full Member
gluten, lactose, fructose, histamine, and salicylate intolerant
Posts: 236
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Post by esmee on Apr 16, 2012 1:22:50 GMT -5
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Post by ukbill on Apr 22, 2012 17:48:05 GMT -5
Bile ducts can be blocked by gall stones ?? yes? I know a diet very high in fats can cause gall stones, however I have not yet had them (my father had really bad gall stones at an earlier age than I am now..) however I am showing signs of having them because I really get a a bad reaction if I eat too much fatty foods now..  lots of gas (burping) and a very painful distended feeling in the middle of my chest. I have been told this is symptomatic of gall stones. Keep smiling |
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Post by karmar on Jul 17, 2012 5:37:33 GMT -5
I would suggest start drinking green tea as well as its Vitamin C content it also has caffeine which keeps Gall bladder in good health and aids in the stimulation of bile flow which is required to break down fats.... Lecithin is also good for helping break down cholesterol. Diets high in fructose and sucrose have a higher incidence of gallstones but dietary starch helps reduce them, rice would make a great staple and base to each meal. Sticky rice, rice noodles, rice pudding etc all in the white variety is what i love to eat as base meals now. I've read that if you have an allergy to anything than the gall bladder is slower to release bile... Maybe steer clear of anything with fructose that is disguised by glucose in it for the time being and include good omega 3, sardines, wild caught salmon, tuna as EFA are essential in well being as we can not manufacture these fats.... Also, grass fed meat has a higher level of omega 3 level than grain fed meats which omega 6 dominates so maybe try and source those, higher omega 6 ratio generates the unhealthy belly fat. That includes butter too. Always choose grass fed over grain fed commercial butters. Generally if you buy whole pasture fed carcasses it works out a lot cheaper, you just need a good size freezer.. Problems with gallbladder can lead to problems with pancreas especially if a stone blocks the pathway of pancreatic flow.... Anyways, good to hear you are doing better! |
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Post by karmar on Jul 18, 2012 4:39:57 GMT -5
Sorry, I forgot to disclose that lecithin is a derivative of soy so if you do not tolerate it then best to avoid.... |
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shereebailey83
Junior Member
Confirmed HFI at 3 years old via Liver Biopsy
Posts: 61
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Post by shereebailey83 on Jul 21, 2012 6:01:14 GMT -5
Hello everyone,
thank you for your posting. I underwent every scan, ct, ultrasound, endoscopy, etc etc over 8 tests in all and it turns out the gall bladder and pancreas were very healthy. HOWEVER due to the amount of stress i had been undergoing for the last year they think that my diet (not eating properly with a newborn baby) and stress can cause excruciating abdominal pains... i learnt my lesson the hard way but please.... EAT RIGHT, don't cut corners and get plenty of sleep, it was so scary and hard with a baby but i've come out of it all with a much better balanced diet, sticking to the rules of HFI etc... thanks for everyone's support
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Post by ukbill on Jul 25, 2012 7:24:44 GMT -5
Good to hear you are on the mend and have an answer I had crippling abdominal pains until I was put on Colofac which stopped my gut going into spasims.. Life changing! |
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lots of gas (burping) and a very painful distended feeling in the middle of my chest.