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Post by tummyache on Dec 17, 2020 18:24:03 GMT -5
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Post by colormist on Dec 18, 2020 11:52:54 GMT -5
Yup, found that out the other day, too. Not cool at all. I'm hoping one of the other manufacturers have a fructose-free vaccine, but if not I might have to do the math to calculate how much sucrose is in both to figure out if the grams are low enough to be safe for HFIers.
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Post by ukbill on Dec 18, 2020 13:20:28 GMT -5
The amount of Sucrose included is 0.006g per shot.. that is 0.003g of Fructose.. If we were being given 1000 shots then we would have an issue.. but at 0.003g That is about the same amount as in 1 grain of white rice at a guess. This is not an issue. We may get a slight reaction.. but then a high % of people who are given a placebo (water) also report getting "reactions" of one sort or another. Rest easy and get your jab, the fructose content is the least of our worries.. getting Covid however is not! I had it and it had a serious "go" at my liver (I am now only allowed 50% normal dose of painkillers.  It also gave me chronic Arthritis which was terribly painful but thankfully has now eased to the point where after 9 months I am off regular painkillers altogether. My Liver seems to be OK for now.. but I certainly do not want another dose ever! Keep smiling Keep SAFE! |
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Post by tummyache on Dec 18, 2020 14:42:15 GMT -5
UKBILL, did I understand right and it was Covid that hurt your liver, but you are doing much better now? Thank heavens you made it through that horrible virus, you are important to us! Thank-you for the math...I am feeling much more confident now about getting the shots. However, I think it is wise to get these in a medical setting or hospital rather than in one of those random shot locations they talk of setting up, just to be on the safe side. I feel the same as you do about the Polysaccharide Pneumonia shot - I don't ever want another one of those either!
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Post by ukbill on Dec 18, 2020 15:21:31 GMT -5
I only had very mild symptoms and because I had it early (End of Feb I think or 1st week March) no testing was available. However the arthritis hit and I was feeling pretty bad and sleeping a lot more than usual (I still am). By April I had my annual liver scan and my arthritis was really bad. The scan and blood tests blew out really bad. Professor Cox (a wonderful man) put me on far more effective pain relief and banned me from using more then 50% normal dose of paracetamol once my blood results came back. Since then then subsequent blood tests have come back fine (as have some today). I will find out if the liver damage is permanent next April when my scans are done again. This is the main problem with Covid. It is not the infection itself its our own body's attacking it's self trying to find what is attacking it. Any old damage will get the attention of the immune system. Keep smiling  |
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nancy
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Post by nancy on Jan 27, 2021 14:45:29 GMT -5
I just had my first COVID vaccination this morning. I was given the Moderna vaccine. So far, feeling okay, arm a little achy; but nothing like the reaction I had when I had the flu vaccine several years ago. The flu vaccine has far more inactive ingredients than the COVID vaccine. Needless to say, I no longer get the flu vaccine because of that reaction.
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Post by ukbill on Feb 1, 2021 17:52:50 GMT -5
Felling a little unwell for a few days after is a common reaction to any Vaccine. I hope all go's well.
Welcome to the group.
I presume you have HFI? Been diagnosed?
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nancy
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Post by nancy on Feb 7, 2021 12:26:08 GMT -5
Thanks. Just a follow up. A week after I had the vaccine, my arm started itching at the site of the injection, then became red and inflamed looking. Started taking an antihistamine (Allegra-only one I can take) and putting cortizone cream on it. Finally clearing up. I had blood work done the day before I broke out. Results showed that my white cells were low, my neutraphils were low, but my eosinophils were high, all indicating inflammation and allergic reaction. I am writing my doctor to see if I should take the second dose.
I have not had a formal diagnosis, but I did the 23andme DNA and I have multiple single pathogenic mutations, two of which are among the most common mutations. Doctors doing research now believe that you can have it even if you don't have 2 copies of a single mutation. I have had hypoglycemic episodes my entire life, and then in the last several years started having severe pain in my upper abdomen under my sternum. My mom developed kidney failure in her sixties and eventually died from liver cirrhosis in her late 70's. I am 73 now and I think what we have is a late onset version. My uncle would always throw up after eating. Now his daughter who is in her 60's has developed the same stomach pain that I started out with. If I eat anything with fructose, sucrose, sorbitol or polysorbate, I get the pain under my sternum, kidney pain, and my cortisol levels go and I get insomnia. Like Dr. Tolan said, if you have the symptoms, then you probably have the disorder.
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Post by tummyache on Feb 12, 2021 9:05:29 GMT -5
Finally was able to get Pfizer 1st dose Covid Vac couple of days ago with no adverse reaction (sore arm only)-- so thankful! Really glad after having problems with polysaccharide pneumonia shot. 2nd due March 2nd.
After 2nd Vaccination: No reaction except a bit overly tired for a couple of days and bit of a sore arm. It's been 3 weeks now, so feeling great about having both shots. No need to worry. Like UKBill says, the amount of sugars is so small, the disease so terrible - best to get vaccinated!
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Post by ukbill on Mar 8, 2021 15:51:19 GMT -5
Thanks. Just a follow up. A week after I had the vaccine, my arm started itching at the site of the injection, then became red and inflamed looking. Started taking an antihistamine (Allegra-only one I can take) and putting cortizone cream on it. Finally clearing up. I had blood work done the day before I broke out. Results showed that my white cells were low, my neutraphils were low, but my eosinophils were high, all indicating inflammation and allergic reaction. I am writing my doctor to see if I should take the second dose. I have not had a formal diagnosis, but I did the 23andme DNA and I have multiple single pathogenic mutations, two of which are among the most common mutations. Doctors doing research now believe that you can have it even if you don't have 2 copies of a single mutation. I have had hypoglycemic episodes my entire life, and then in the last several years started having severe pain in my upper abdomen under my sternum. My mom developed kidney failure in her sixties and eventually died from liver cirrhosis in her late 70's. I am 73 now and I think what we have is a late onset version. My uncle would always throw up after eating. Now his daughter who is in her 60's has developed the same stomach pain that I started out with. If I eat anything with fructose, sucrose, sorbitol or polysorbate, I get the pain under my sternum, kidney pain, and my cortisol levels go and I get insomnia. Like Dr. Tolan said, if you have the symptoms, then you probably have the disorder. OK just to make this clear there is no "late onset" version of HFI. However the constant poisoning slowly causes permanent damage which mounts up, and as you will have noticed.. we do not heal as well when we are older! I would suggest urgently reviewing your diet and cut all vegetables out and glucose! Which is very likely to be contaminated with up to 4% fructose. It is vital you sort this out quickly for both for yourself and your uncles daughter. We at EATSAFE.org@gmail.com a charity set up to support people with HFI, have a safe foods list which admittedly is UK cantered because that's where we live. The varieties of potatoes and other veg etc differ from country to country however the method of preparation to reduce the fructose load will help in all countries. If you cannot obtain frozen mashed potatoes (or dried) then pealing and cutting small before soaking for some time in water (change before cooking) will greatly reduce the fructose load in "floury" potatoes but not so much in the waxy type which should always be avoided. The MAXIMUM safe dose for a full grown adult is 2g a day. That is about 1 teaspoonful spread over 3 days! for a child very much less. Ordinary potatoes can have 8% sugar content however frozen potatoes usually (unless sugar is added) will be far lower than that due to losses of nutrient value caused by industrial processing of the food. Digestible Fibre also has to be avoided because this converts into sucrose in the small intestine! So wholemeal is out for two reasons. 1/. the digestible fibre and 2/. the germ of a grain has a quantity of fructose in it. this is removed in milling to make white flour. While in recovery which for younger people takes approximately 6 months, for us older people quite a bit longer, once you are clear of Fructose you will start to feel so much better than you have ever felt in your entire life! No joke. You are in for a wonderful time. When all your life you have been ill, being ill is your "normal" once you get Fructose free your stomach issues will subside (we can help there also) and your energy levels will go up like never before and the overall feeling of just being healthy will be a great surprise and very welcome I am sure. We are working with the metabolic clinic at Addenbrookes Hospital Cambridge UK With the professor who discovered the 1st gene that was responsible for HFI many years ago. We have adapted (crudely I am sorry to say ) the Addenbrookes hospital "safe foods list" to actually make it safe. I will attach it to this post. Been as you mention Dr Tollan I presume you live in the USA? I hope this helps? If you want to discuss details less openly then please email us at the eatsafe.org@gmail.com address |
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Post by Stefanie (Ziba) on Mar 8, 2021 16:36:56 GMT -5
Nancy,
That is what Dr. Tolan told me as well. My son had all the symptoms and improved immediately on the HFI diet.
FYI- Johnson and Johnson vaccine doesn't have any sugars!
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nancy
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Post by nancy on Mar 14, 2021 13:05:18 GMT -5
I had my second Moderna vaccine on Feb. 24. I had an awful reaction to it. I had chills, fever, diarrhea, vomiting, and muscle aches for a day and a half, but the muscle aches lasted for 2 weeks. At least, I'm vaccinated.
I probably shouldn't have used the term late onset. I've had problems my entire life and so did my mother, but it seems that for my family, it's like a slow progression. The fructose has destroyed my colon. I now have microcytic colitis. I'm doing fine on the HFI diet now. I only eat meats, some cheese, Greek yogurt, home made gluten free drop biscuits (because I can't have yeast), and gluten free pasta. Sometimes I'll have a bit of watercress or spinach, but very infrequently because my kidneys can't clear the fructose out. I believe that there are a lot more people out there who have this disorder judging by the number of people who have irritable bowel disease and have no clue what caused it. And I honestly believe that fructose malabsorption is not a separate disorder but just a precursor to HFI.
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Post by ukbill on Mar 15, 2021 13:36:06 GMT -5
I had my second Moderna vaccine on Feb. 24. I had an awful reaction to it. I had chills, fever, diarrhea, vomiting, and muscle aches for a day and a half, but the muscle aches lasted for 2 weeks. At least, I'm vaccinated. I probably shouldn't have used the term late onset. I've had problems my entire life and so did my mother, but it seems that for my family, it's like a slow progression. The fructose has destroyed my colon. I now have microcytic colitis. I'm doing fine on the HFI diet now. I only eat meats, some cheese, Greek yogurt, home made gluten free drop biscuits (because I can't have yeast), and gluten free pasta. Sometimes I'll have a bit of watercress or spinach, but very infrequently because my kidneys can't clear the fructose out. I believe that there are a lot more people out there who have this disorder judging by the number of people who have irritable bowel disease and have no clue what caused it. And I honestly believe that fructose malabsorption is not a separate disorder but just a precursor to HFI. Very unlikely you have HFI sorry. No FM is in no way medically related in any way to HFI, FM is not caused by a genetic problem. We cannot tolerate any sucrose / fructose sugars or fruits, vegetables etc from BIRTH indeed few of us used to get past weaning without dying from liver failure. Our reactions to taking either sucrose or Fructose are a classic poisoning event. Yes we also get bad gut problems but they are but a small side show to what happens if we eat any appraisable amount of Fructose or Sucrose. Best advice is to get your results reviewed by a genetic specialist, preferably get a specialist to order a full genetic test and then you will get a better chance of a definite answer. Yes the HFI diet is safe for everyone (given a little vitamin C daily) and staying completely Fructose free for a time might help your intestines sort themselves out and heal. I would suggest remaining on a fructose free diet or the FOD Map diet until you get the result of a genetic test to find out what is going on. I am presuming you are fine on normal table sugar? If you have HFI this will be as bad as eating 1/2 the amount of fructose. There are over 7000 identified Genetic problems only 250 are known about in any detail. Another genetic condition also unrelated to HFI or FM that can cause all the issues you describe called CSID. It is 5x more common than HIF but it displays a variable range of symptoms which go from very mild to severe, hence it is frequently missed by specialists. The effects are largely gut / bladder related but can also be behavioural in some cases. It's not the gluten but the starch converting to glucose that is the issue with CSID (if I remember rightly) I am not an expert in CSID just know a little about it due to a lot of people with the condition landing on our support pages looking for help. I hope this helps? Keep smiling |
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nancy
New Member
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Post by nancy on Mar 16, 2021 17:22:59 GMT -5
I am 100% positive that I have HFI. I can eat no fructose, sucrose, sorbitol or polysorbate. If I eat any of those sugars, my kidney function drops and my liver enzymes go up; and I don't have the mutations for the other disorders. My mother died from kidney disease and cirrhosis of the liver. I think you have to realize they still don't know all there is to know about HFI.
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Post by christi on Mar 18, 2021 15:10:08 GMT -5
I am 100% positive that I have HFI. I can eat no fructose, sucrose, sorbitol or polysorbate. If I eat any of those sugars, my kidney function drops and my liver enzymes go up; and I don't have the mutations for the other disorders. My mother died from kidney disease and cirrhosis of the liver. I think you have to realize they still don't know all there is to know about HFI. |
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Post by christi on Mar 18, 2021 15:10:23 GMT -5
I am 100% positive that I have HFI. I can eat no fructose, sucrose, sorbitol or polysorbate. If I eat any of those sugars, my kidney function drops and my liver enzymes go up; and I don't have the mutations for the other disorders. My mother died from kidney disease and cirrhosis of the liver. I think you have to realize they still don't know all there is to know about HFI. |
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Post by christi on Mar 18, 2021 15:10:53 GMT -5
I would love to talk to you |
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Post by ukbill on Mar 20, 2021 12:20:11 GMT -5
I am 100% positive that I have HFI. I can eat no fructose, sucrose, sorbitol or polysorbate. If I eat any of those sugars, my kidney function drops and my liver enzymes go up; and I don't have the mutations for the other disorders. My mother died from kidney disease and cirrhosis of the liver. I think you have to realize they still don't know all there is to know about HFI. OK if you do have HFI then a complete avoidance of everything that contains Fructose is essential. It is posible to have both HFI and FM although the symptoms of FM only appear in later life. If it is FM and not the effect of HFI. Find the safe foods list we have posted on here and stick to it. that will help a lot. |
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