I am desperate for some guidance here. I live in the Middle East and am unable to find anyone to guide us. I know this is not a CFS question but please it is a methylation question.My nephew is 7 years old? He has a twin sister also. Last two years growth has been very slow and now his sister is a lot taller and bigger all round. Been slow in school and teachers saying his hands are weak. Seems he has no strength there at all. Was taken to the UK in the summer 2012 to Great Ormond Street Hopsital, and was diagnosed with gluten sensitivity. Has been started on stomach medicine to heal any damage done by wheat etc. Now 2 months on the medicine and off wheat totally. No change in growth and weakness continues. Have been following the forums here and another site for the last 2 years, I also have B12 issues and this site has helped me greatly. 2 weeks ago we started him on b complex without folic acid, for children and a methyl b12 liquid brand. Dose is 500mcg daily in the mouth. Also some children's acidophilus as was on antibiotics for months as they claimed he had heliobacter. Today, after 2 weeks his mother reports the boy is experiencing leg pains. I see this as being positive but to be honest I am totally lost I know to leave this situation is dangerous for the boy. I just wished we could have some guidance that we could rely on. There is no doctor here that is up on this subject. I have asked and all they give is cobalamin if there is deficiency. Would really appreciate any reply as I have trawler the Internet and no real support for this in children.
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For the attention of Fredd
- Thread starter Daisy
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Freddd
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HI Daisy,
I'll get back to you when I have more time. However, if the leg pains are actually from spsam, I would suggest that the vitamons are heloing and he needs some potassium for forming cells. Adults typically need 2000-3000mg additional potassium a day when healing turns on. A child would need far less. Salt substitute (potassium chloride) from the food store might be able to do the trick. Are they spasms? Does he wake up in th middle of the night screaming? Or Under what circumstances?
I'll get back to you when I have more time. However, if the leg pains are actually from spsam, I would suggest that the vitamons are heloing and he needs some potassium for forming cells. Adults typically need 2000-3000mg additional potassium a day when healing turns on. A child would need far less. Salt substitute (potassium chloride) from the food store might be able to do the trick. Are they spasms? Does he wake up in th middle of the night screaming? Or Under what circumstances?
Hi Freddie,
Many thanks for yor reply. As far as I can make out his legs are just aching, one more than the other. He was sent home from school with a letter about leg pain. It has just started today and not happened before. No description other than very painful. I had pre warned the mother that there may be some aching in the limbs before she started the B12. She should really have his vitamin D checked also which she intends to do. I will suggest potassium, I have some somewhere in my cupboards. Another thing I forget to mention when taken to the UK he was found to be have low iron. I iknow the boy desperately needs these vitamins to save him from any more damage from low B12
Many thanks for yor reply. As far as I can make out his legs are just aching, one more than the other. He was sent home from school with a letter about leg pain. It has just started today and not happened before. No description other than very painful. I had pre warned the mother that there may be some aching in the limbs before she started the B12. She should really have his vitamin D checked also which she intends to do. I will suggest potassium, I have some somewhere in my cupboards. Another thing I forget to mention when taken to the UK he was found to be have low iron. I iknow the boy desperately needs these vitamins to save him from any more damage from low B12
Hi Daisy,
I'm a different Phred, but I'm here for the same reason. I have Celiac Disease. I have been doing a version of Fred's protocol for several months now and it has made a difference.
The symptoms you mention for your nephew (the failure to thrive, low iron and b12) sound more like malabsorption issues. This is indicative of Celiac not a sensitivity. Non Celiac Gluten Intolerance (NCGI or NCGS) doesn't cause the same intestinal damage that Celiac does. It will cause brain fog, neurological issues - numbness in the fingers, hands and feet and joint pain.
Also your nephew needs to not ingest ANY gluten. That means no rye, barley, wheat and most oats. Check the labels on everything! Gluten hides in everything. You can follow Fred's protocol as much as you want if your nephew is still ingesting gluten, even very small amounts, his intestines will never heal. It will constantly be attacked by antibodies.
He should also get his calcium checked. Iron, b12, folate, calcium and vitamin D are the big deficiencies Celiac patients face.
I'm a different Phred, but I'm here for the same reason. I have Celiac Disease. I have been doing a version of Fred's protocol for several months now and it has made a difference.
The symptoms you mention for your nephew (the failure to thrive, low iron and b12) sound more like malabsorption issues. This is indicative of Celiac not a sensitivity. Non Celiac Gluten Intolerance (NCGI or NCGS) doesn't cause the same intestinal damage that Celiac does. It will cause brain fog, neurological issues - numbness in the fingers, hands and feet and joint pain.
Also your nephew needs to not ingest ANY gluten. That means no rye, barley, wheat and most oats. Check the labels on everything! Gluten hides in everything. You can follow Fred's protocol as much as you want if your nephew is still ingesting gluten, even very small amounts, his intestines will never heal. It will constantly be attacked by antibodies.
He should also get his calcium checked. Iron, b12, folate, calcium and vitamin D are the big deficiencies Celiac patients face.
Hi Phred,
Thank you for yor reply. The drs mentioned to my sister in law that the child is 50% Celiac when they took him abroad for tests purely for slow growth. An odd diagnosis, surely he either is or isn!t Celiac. Before that he had been under a top child specialist here and nothing was found other than heliobacter which he was treated for. The child has been put on a very strict diet. Absolutely no wheat or gluten etc that can cause more damage. Stunted growth, weakness mainly in the hands are the biggest problems. Takes him 3 times longer to do a button up and his writing is very poor due to not being able to hold the pencil properly. The main problem as I'm sure many recognise is getting Drs to listen. I went through it myself. Eventually was diagnosed with UC but had many years of living in a fog that I came out of due to starting B12 and reading Fredd's and others posts. I was told I was stressed so many times by Drs, told I was a hypochondriac. Drs just won't listen sometimes. And the same applies here. We have basically had to go this alone and start my nephew on Fredd's basic protocol to see if it will help. We will keep trying with the Drs but I don't hold out much hope. Thank you for your kind reply. Am so glad that you have found something to help you. Fingers crossed this helps my nephew.
Kind regards, Daisy
Thank you for yor reply. The drs mentioned to my sister in law that the child is 50% Celiac when they took him abroad for tests purely for slow growth. An odd diagnosis, surely he either is or isn!t Celiac. Before that he had been under a top child specialist here and nothing was found other than heliobacter which he was treated for. The child has been put on a very strict diet. Absolutely no wheat or gluten etc that can cause more damage. Stunted growth, weakness mainly in the hands are the biggest problems. Takes him 3 times longer to do a button up and his writing is very poor due to not being able to hold the pencil properly. The main problem as I'm sure many recognise is getting Drs to listen. I went through it myself. Eventually was diagnosed with UC but had many years of living in a fog that I came out of due to starting B12 and reading Fredd's and others posts. I was told I was stressed so many times by Drs, told I was a hypochondriac. Drs just won't listen sometimes. And the same applies here. We have basically had to go this alone and start my nephew on Fredd's basic protocol to see if it will help. We will keep trying with the Drs but I don't hold out much hope. Thank you for your kind reply. Am so glad that you have found something to help you. Fingers crossed this helps my nephew.
Kind regards, Daisy
Daisy, glad to hear he is on a strict diet. Just to let you know a lot of celiacs have issues with dairy, at least at first. For some it can be the lactose and others it can be the casein (the protein in dairy, especially cheese). Watch out for issues with soy and corn as well. All of those proteins are very similar structurally so the body has trouble differentiating them. So keep an eye on those in case he develops other problems and you don't know where those might be coming from.
As for your doctor's diagnosis of 50% Celiac, well that's just plain wrong! There's no such thing as half celiac. Doctors drive me crazy. You can find some great information about Celiac here http://www.celiac.com/gluten-free/ They won't be able to help with your nephew's healing, but they are a wealth of info about Celiac. I keep trying to nudge them to take more b12 and to make sure it's a sublingual methylb12, but they think their serum levels are ok so they must be fine. But then they complain about brain fog and numb hands/feet and don't understand why they feel so crappy still.
2 months gluten free really isn't enough time for your nephew's villi to heal. I've been gluten free for almost 6 months and am just starting to feel a difference. It can take up to 18 months for the healing to happen. Definitely keep him on Fred's protocol and gluten free diet (and make sure there is absolutely no cross contamination from other sources of gluten). Try to have some patience. I'm sure he will feel better soon. Good luck.
As for your doctor's diagnosis of 50% Celiac, well that's just plain wrong! There's no such thing as half celiac. Doctors drive me crazy. You can find some great information about Celiac here http://www.celiac.com/gluten-free/ They won't be able to help with your nephew's healing, but they are a wealth of info about Celiac. I keep trying to nudge them to take more b12 and to make sure it's a sublingual methylb12, but they think their serum levels are ok so they must be fine. But then they complain about brain fog and numb hands/feet and don't understand why they feel so crappy still.
2 months gluten free really isn't enough time for your nephew's villi to heal. I've been gluten free for almost 6 months and am just starting to feel a difference. It can take up to 18 months for the healing to happen. Definitely keep him on Fred's protocol and gluten free diet (and make sure there is absolutely no cross contamination from other sources of gluten). Try to have some patience. I'm sure he will feel better soon. Good luck.
taniaaust1
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Gluten sensitivity and celiac disease thou both issues with gluten are not medically the same thing. Many doctors I know dont even believen in gluten sensitivity (thou Im sure it does exist).. the doctors comment about him being 50% celiac maybe was a just a stupid kind of reference to him having gluten sensitivity which isnt true celiac disease. Probably just as important thou for him to stay away from all gluten.
I wonder if they tested things like growth hormones etc too. I strongly suggest to make sure you have copies of all the tests he's had done as often they will show things (abnormalities) doctors ignored and give you clues on other issues he could have. They often tend to ignore abnormalities if they dont understand what they mean. Maybe all his issues are due to gluten issues but then maybe not.
best luck
I wonder if they tested things like growth hormones etc too. I strongly suggest to make sure you have copies of all the tests he's had done as often they will show things (abnormalities) doctors ignored and give you clues on other issues he could have. They often tend to ignore abnormalities if they dont understand what they mean. Maybe all his issues are due to gluten issues but then maybe not.
best luck
nandixon
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Has the possibility of a muscular dystrophy been ruled out?