Post by beanbemble on Aug 12, 2021 9:50:11 GMT -5
Hello, I apologise in advance for the HUGE essay I am going to write. I have been lurking on this board for years to be honest, but have been reading a lot more of the posts over the past few months. We live in West Yorkshire in the UK, but lived in Qatar in the middle east for 7 years which has definitely delayed any kind of diagnosis / testing for my two children.
I'll start at the beginning. My son Reece is 10, he has been unwell pretty much from birth. He was born with a tongue tie and had a lot of feeding issues, despite that I breastfed almost exclusively, only topping up with formula when I really had to due to the pain. He had severe 'colic' for the first 5 months of his life, and never ever slept. Did around 9 dirty nappies a day and fed almost constantly. Always screamed in pain before and during a poo. Back then nobody really mentioned changing my diet really, I cut dairy out when he was a few months old and it didn't make much difference but he definitely seemed to react to a lot of things I ate so I steered clear and just told myself I must have accidentally eaten something with milk in. I could never put my finger on what though.
Weaning didn't go very well, we tried baby led weaning and obviously fed him a LOT of fruit and veg. He was very upset most of the time, I specifically knew he couldn't tolerate any medicines (sorbitol) and would vomit calpol straight up. Pears were the worst food for him and he would always puke them up, which never made sense because everything I read about allergies said they are super low allergen. I came across the low fodmap diet when he was around 2.5 and on day one he had the first solid poo of his life. OMG I thought we'd cracked it! But no, the diarrhoea continued, but he did seem a lot happier on a sorbitol free, lower fructose diet. O still gave him fruits though, and orange juice and sucrose / sugar. We kind of gave up on it because nothing we did helped him. I noticed behaviour issues, he really struggled at school and couldn't concentrate on things (but hes a boy, so who knew)... he was very unhappy about being away from me and screamed being left, he just felt ill a lot
I breastfed him til 2.5 years old. We saw various doctors and dieticians with little help (in Qatar). We thought he might have a corn allergy but a corn free diet didn't help either.
Some strange symptoms I could never figure out were that he had a lot of leg pain (called it his bendy legs), and would get very pale and black eyed after a reaction. Sometimes uncharacteristically grumpy and clingy but then bouts of being hyperactive and runs up and down (he still does this now a bit and not sure if it's related). He ended up in hospital once only and that was after a 2 week holiday to Marrakech. He was so bad the whole holiday, the colic was horrible every evening. He was eating dried fruit every day from the buffet, I now wonder if that was why 2 days after being home he went grey and pale and sweaty and floppy and so I took him to A&E. He fed a lot and then came around, ate chicken nuggets in the hospital and was right as rain! We assumed it was a bug, perhaps it was. He had one other similar incident after eating a TONNE of chocolate from the buffet we set up right before his second birthday party, he went hot pale and floppy and threw up and missed the whole party. We had allergy testing done that said he was allergic to chocolate so we thought it was probably that.
Reece also has migraines, no amount of diet changes has stopped these and they are now cyclical and we can set our clock around them happening every 3 months. Initially, aged 3 and 4 they were less regular and only seemed to occur after kids parties so we blamed food - now changing diet does nothing for them.
Fast forward 5 years and Emily came along, she was a much more settled baby. She started to get a little colic and this time I paid much more attention to what I was eating, I kept reading sugar doesn't pass through breast milk but I just knew foods were going through mine in a bit way. I had to stop taking the lactulose I was on for the post birth constipation. Then I cut chocolate. etc etc... She was generally happier than Reece but not great, and the same had awful nappies 7-8 times a day. She was absolutely miserable after the rotavirus oral vaccine which I since realised was sugar. She cried for days and had 2 weeks of liquid diarrhoea. We ended up doing HUGE elimination diets. Once weaning started, she didn't do well on fruit and veg. She would get a red rash around her mouth and started reacting to everything pretty much, it looked more like allergy or intolerance and she would get a really snotty blocked crusty nose. We tried Ketitofen medicine thinking it might be MCAS and she seemed worse if anything, we tried a low histamine diet for both kids but they were worse. I've tried low glutamate diets and low oxalate diets. I came back to the low fodmap thing and it seemed to improve things a bit. I started using dextrose in baking instead of sugar / maple syrup / honey and that helped a lot but never entirely.
I came across CSID and was 99% certain I'd hit the nail on the head!!! There was no testing for CSID in Qatar (the endoscopy) so the Dr did genetic testing, that was negative. I felt deflated but read that it doesn't always mean they don't have CSID, so we continued with a strict CSID diet, myself included because I was still breastfeeding and things were definitely MUCH better than they had been. Reece's attention improved a lot and he felt much better. They definitely weren't 100% on the diet but much better. They struggled a lot with being low carb but I convinced myself it must be CSID and kept them away from bread and pasta and rice etc, just allowing small amounts of crisps. I couldn't understand why grapes were still a huge no no and decided fructose was also a huge issue as well as the sugar, sorbitol and starch.
And they can't tolerate any artificial sweeteners other than aspartame and acesulfame-k (which I limit a lot).
I'd mentioned maybe blood sugar issues before to previous doctors but had it shrugged off saying diabetes causes high BS so it clearly wasn't that...
Soooooo.... we moved back to the UK in December 2019 and had an endoscopy done on them both last year. Virtually normal results, I could have cried. Their sucrase levels are borderline so the Dr agreed to a trial of Invertase, the enzyme replacement for CSID. I tried it twice, once without food and once with grapes - no improvement at all and Emily's lipped swelled like she was allergic to it! God!
So I came back to HFI, I'd dismissed it because their symptoms, though they do rule our lives, have never felt life threatening. These kids are identical in what they tolerate, apart from the fact that Emily is dodgy still with dairy, they are the same. If one trials and tolerates a food, the other will be certain to (Emily is 5 and more sensitive than Reece who is 10). The cost of their food on a high-meat diet was killing us so I thought sod it let's reintroduce wheat. Well, white wheat has been an easier introduction than any vegetable ever has been!
But these kids do not have an aversion to sweets - in fact they LOVE sweet stuff, and ask for them all the time!
!
Weirdly, they seem great with sandwiches (safe bread) later in the day but if they eat it first thing on an empty stomach they go pale again. The only breakfast guaranteed to make the colour stay in their cheeks are eggs. They could eat a full french stick in an afternoon, but pancakes for breakfast turn them pale - does that add up for HFI? I can't figure that out?!!!
I've been so hesitant to cut out fruit and veg, I cut down slowly as they were having a smoothie every day I knew was bothering them (few strawberries, chinese cabbage, cucumber and dextrose). I cut that out. They are now eating white flour, crisps, old white potatoes, when we eat out french fries or chips (hit and miss to be honest??!), the odd strawberry, sugar free jelly, Reece eats cheese and butter, I'm yet to try milk and I'm starting to trial Emily with butter again. They also have baby leaf spinach, cucumber and romaine lettuce. I make homemade ketchup using dextrose. I tried carrots a while ago, Emily's colour changed halfway through eating them but seemed ok - got up the next morning and vomited on my bedroom floor.
I've finally just spoken to their doctor who is referring them to Leeds hospital for genetic testing for HFI. But he says that it is only 85% accurate, which I've read on here... it's been a nightmare 10 years and they have been through too much for children so young. It has caused to many arguments between myself and my husband because I've been so strict and tried SO many diets. Hell! I've worried that cutting foods out has made them worse, they are so much more sensitive it seems than they were yet much happier. I feel bad about it all but felt I had no choice. I've felt like food poisons them at times!
The Dr has now advised me to check their blood glucose levels after foods, something I've been considering doing but wanted to ask him first. Would this be a good idea? Any recommendations of how and when and what monitor?
Oh, adding to this... my husbands grandma had a lot of 'food intolerances' and was a bit of a nightmare (strange woman, we joke she was bi-polar - big mood swings really and she was tiny) No idea about blood sugar issues though, my mother in law has diabetes which is clearly the opposite issue blood sugar wise.
My 69 year old dad has terrible stomach issues. His didn't start as a child though, all started as an adult. He thinks it's after a period of stress but I'm unsure. My parents used to eat meat but went vegetarian and then pescatarian (added fish). I'm sure his issues are food and I've hinted at him changing his diet but he's so stubborn! He hates pasta and likes health food, my mum is a good cook and makes curries and uses so much veg and fruit. He's been taking inulin and a cocktail of other vitamins and supplements that never help. Doesn't eat much sugar but soooo much fruit and veg. Always seems better on holiday so they think it's stress, but I bet he doesn't eat as 'healthily' on holiday, although alcohol always seems to upset him?! He thinks asparagus and apples are bad for him; I think it's fructose! He's had gout several times and now has some other issues that we think are unrelated but who knows!!! No liver issues though.
I'm just so sure this is genetic, how can it not be? But does it sound like HFI?
Again, if you read all this you are a saint, and I would love your opinions. I don't want this to be HFI but I desperately need a diagnosis, not only for my kids but potentially for my dad too. I also need to limit their diets more if they do have this!
Michelle xx
PS. Realised I didn't really list stomach symptoms - they both had horrible poo for a loooong time. Pale, floating, greasy, smelly. Often with undigested food in, Emily in particular. I've considered SIBO and Candida but it seems like much more than those? Their poops are actually pretty ok now, can be a bit sticky but not awful. I've bought psillium husks but haven't tried them yet. And they take a safe multivitamin, calcium / magnesium and vitamin D daily.
I'll start at the beginning. My son Reece is 10, he has been unwell pretty much from birth. He was born with a tongue tie and had a lot of feeding issues, despite that I breastfed almost exclusively, only topping up with formula when I really had to due to the pain. He had severe 'colic' for the first 5 months of his life, and never ever slept. Did around 9 dirty nappies a day and fed almost constantly. Always screamed in pain before and during a poo. Back then nobody really mentioned changing my diet really, I cut dairy out when he was a few months old and it didn't make much difference but he definitely seemed to react to a lot of things I ate so I steered clear and just told myself I must have accidentally eaten something with milk in. I could never put my finger on what though.
Weaning didn't go very well, we tried baby led weaning and obviously fed him a LOT of fruit and veg. He was very upset most of the time, I specifically knew he couldn't tolerate any medicines (sorbitol) and would vomit calpol straight up. Pears were the worst food for him and he would always puke them up, which never made sense because everything I read about allergies said they are super low allergen. I came across the low fodmap diet when he was around 2.5 and on day one he had the first solid poo of his life. OMG I thought we'd cracked it! But no, the diarrhoea continued, but he did seem a lot happier on a sorbitol free, lower fructose diet. O still gave him fruits though, and orange juice and sucrose / sugar. We kind of gave up on it because nothing we did helped him. I noticed behaviour issues, he really struggled at school and couldn't concentrate on things (but hes a boy, so who knew)... he was very unhappy about being away from me and screamed being left, he just felt ill a lot
I breastfed him til 2.5 years old. We saw various doctors and dieticians with little help (in Qatar). We thought he might have a corn allergy but a corn free diet didn't help either.Some strange symptoms I could never figure out were that he had a lot of leg pain (called it his bendy legs), and would get very pale and black eyed after a reaction. Sometimes uncharacteristically grumpy and clingy but then bouts of being hyperactive and runs up and down (he still does this now a bit and not sure if it's related). He ended up in hospital once only and that was after a 2 week holiday to Marrakech. He was so bad the whole holiday, the colic was horrible every evening. He was eating dried fruit every day from the buffet, I now wonder if that was why
2 days after being home he went grey and pale and sweaty and floppy and so I took him to A&E. He fed a lot and then came around, ate chicken nuggets in the hospital and was right as rain! We assumed it was a bug, perhaps it was. He had one other similar incident after eating a TONNE of chocolate from the buffet we set up right before his second birthday party, he went hot pale and floppy and threw up and missed the whole party. We had allergy testing done that said he was allergic to chocolate so we thought it was probably that.Reece also has migraines, no amount of diet changes has stopped these and they are now cyclical and we can set our clock around them happening every 3 months. Initially, aged 3 and 4 they were less regular and only seemed to occur after kids parties so we blamed food - now changing diet does nothing for them.
Fast forward 5 years and Emily came along, she was a much more settled baby. She started to get a little colic and this time I paid much more attention to what I was eating, I kept reading sugar doesn't pass through breast milk but I just knew foods were going through mine in a bit way. I had to stop taking the lactulose I was on for the post birth constipation. Then I cut chocolate. etc etc... She was generally happier than Reece but not great, and the same had awful nappies 7-8 times a day. She was absolutely miserable after the rotavirus oral vaccine which I since realised was sugar. She cried for days and had 2 weeks of liquid diarrhoea. We ended up doing HUGE elimination diets. Once weaning started, she didn't do well on fruit and veg. She would get a red rash around her mouth and started reacting to everything pretty much, it looked more like allergy or intolerance and she would get a really snotty blocked crusty nose. We tried Ketitofen medicine thinking it might be MCAS and she seemed worse if anything, we tried a low histamine diet for both kids but they were worse. I've tried low glutamate diets and low oxalate diets. I came back to the low fodmap thing and it seemed to improve things a bit. I started using dextrose in baking instead of sugar / maple syrup / honey and that helped a lot but never entirely.
I came across CSID and was 99% certain I'd hit the nail on the head!!! There was no testing for CSID in Qatar (the endoscopy) so the Dr did genetic testing, that was negative. I felt deflated but read that it doesn't always mean they don't have CSID, so we continued with a strict CSID diet, myself included because I was still breastfeeding and things were definitely MUCH better than they had been. Reece's attention improved a lot and he felt much better. They definitely weren't 100% on the diet but much better. They struggled a lot with being low carb but I convinced myself it must be CSID and kept them away from bread and pasta and rice etc, just allowing small amounts of crisps. I couldn't understand why grapes were still a huge no no and decided fructose was also a huge issue as well as the sugar, sorbitol and starch.
And they can't tolerate any artificial sweeteners other than aspartame and acesulfame-k (which I limit a lot).
I'd mentioned maybe blood sugar issues before to previous doctors but had it shrugged off saying diabetes causes high BS so it clearly wasn't that...
Soooooo.... we moved back to the UK in December 2019 and had an endoscopy done on them both last year. Virtually normal results, I could have cried.
Their sucrase levels are borderline so the Dr agreed to a trial of Invertase, the enzyme replacement for CSID. I tried it twice, once without food and once with grapes - no improvement at all and Emily's lipped swelled like she was allergic to it! God!So I came back to HFI, I'd dismissed it because their symptoms, though they do rule our lives, have never felt life threatening. These kids are identical in what they tolerate, apart from the fact that Emily is dodgy still with dairy, they are the same. If one trials and tolerates a food, the other will be certain to (Emily is 5 and more sensitive than Reece who is 10). The cost of their food on a high-meat diet was killing us so I thought sod it let's reintroduce wheat. Well, white wheat has been an easier introduction than any vegetable ever has been!
But these kids do not have an aversion to sweets - in fact they LOVE sweet stuff, and ask for them all the time!
!Weirdly, they seem great with sandwiches (safe bread) later in the day but if they eat it first thing on an empty stomach they go pale again. The only breakfast guaranteed to make the colour stay in their cheeks are eggs. They could eat a full french stick in an afternoon, but pancakes for breakfast turn them pale - does that add up for HFI? I can't figure that out?!!!
I've been so hesitant to cut out fruit and veg, I cut down slowly as they were having a smoothie every day I knew was bothering them (few strawberries, chinese cabbage, cucumber and dextrose). I cut that out. They are now eating white flour, crisps, old white potatoes, when we eat out french fries or chips (hit and miss to be honest??!), the odd strawberry, sugar free jelly, Reece eats cheese and butter, I'm yet to try milk and I'm starting to trial Emily with butter again. They also have baby leaf spinach, cucumber and romaine lettuce. I make homemade ketchup using dextrose. I tried carrots a while ago, Emily's colour changed halfway through eating them but seemed ok - got up the next morning and vomited on my bedroom floor.
I've finally just spoken to their doctor who is referring them to Leeds hospital for genetic testing for HFI. But he says that it is only 85% accurate, which I've read on here... it's been a nightmare 10 years and they have been through too much for children so young. It has caused to many arguments between myself and my husband because I've been so strict and tried SO many diets. Hell! I've worried that cutting foods out has made them worse, they are so much more sensitive it seems than they were
yet much happier. I feel bad about it all but felt I had no choice. I've felt like food poisons them at times!The Dr has now advised me to check their blood glucose levels after foods, something I've been considering doing but wanted to ask him first. Would this be a good idea? Any recommendations of how and when and what monitor?
Oh, adding to this... my husbands grandma had a lot of 'food intolerances' and was a bit of a nightmare (strange woman, we joke she was bi-polar - big mood swings really and she was tiny) No idea about blood sugar issues though, my mother in law has diabetes which is clearly the opposite issue blood sugar wise.
My 69 year old dad has terrible stomach issues. His didn't start as a child though, all started as an adult. He thinks it's after a period of stress but I'm unsure. My parents used to eat meat but went vegetarian and then pescatarian (added fish). I'm sure his issues are food and I've hinted at him changing his diet but he's so stubborn! He hates pasta and likes health food, my mum is a good cook and makes curries and uses so much veg and fruit. He's been taking inulin and a cocktail of other vitamins and supplements that never help. Doesn't eat much sugar but soooo much fruit and veg. Always seems better on holiday so they think it's stress, but I bet he doesn't eat as 'healthily' on holiday, although alcohol always seems to upset him?! He thinks asparagus and apples are bad for him; I think it's fructose! He's had gout several times and now has some other issues that we think are unrelated but who knows!!! No liver issues though.
I'm just so sure this is genetic, how can it not be? But does it sound like HFI?
Again, if you read all this you are a saint, and I would love your opinions. I don't want this to be HFI but I desperately need a diagnosis, not only for my kids but potentially for my dad too. I also need to limit their diets more if they do have this!
Michelle xx
PS. Realised I didn't really list stomach symptoms - they both had horrible poo for a loooong time. Pale, floating, greasy, smelly. Often with undigested food in, Emily in particular. I've considered SIBO and Candida but it seems like much more than those? Their poops are actually pretty ok now, can be a bit sticky but not awful. I've bought psillium husks but haven't tried them yet. And they take a safe multivitamin, calcium / magnesium and vitamin D daily.
