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SurreyGirl

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  1. With you all the way AliB! The various conditions are probably a result of genetic variability. I am trying currently to understand what turns malabsorption into autoimmune diseases and so far leaky gut is one of the possibilities. And leaky gut can be caused by serious immune assault (the trigger, like serious illnes, vaccines or similar). But what really makes my blood boil is how we get brainwashed into "gold-standard" celiac diagnosis - like if celiac was the only answer. My son would have failed that well and truly, I refused to go back on gluten because he improved so much and he has DQ1, when you have no gut symptoms but you still get neurological damage from gluten. Thank God for some enlightened drs and this forum!
  2. Here is my take on it, we are currently awg results of elastase and I am hoping that we have intercepted too much damage by going on the diet. It can be asymptomatic..(last paragraph). http://care.diabetesjournals.org/cgi/conte...tract/27/8/2052
  3. Hi from the UK!! When I put my son (age 15) on gluten free 2.5 years ago I knew no one in person either, we did it solely to see if his neuro symptom would respond (they did) and with no celiac disease diagnosis. Still the same now, but we know that he is is DQ1 (gluten sensitive) and I am now also gluten free to make it easier. The more I read, the more glad I am that we have gone on the diet. One thing I realised quite quickly is that you can't replace one type of stodge with another to the same extent without potentially causing more problems (some people are rice or corn sensitive too), so we are carb- and dairy-lite too. I cried when I found gluten-free sausages in the supermarket! Now, I mostly cook from scratch to avoid MSG and other chemicals. This forum is truly awesome, also "The Gluten File" has loads to read. SG
  4. I believe it all starts with gluten damage - and it doesn't have to be diagnosed celiac. My son is gluten sensitive (with neuro symptoms that have almost all disappeared now, 2 years + on the diet). We have recently discovered that he has low functioning pancreas and some of liver enzymes are also low. As far as I can see from observing him and from results of blood tests, he was heading for diabetes. Whether malabsorption or autoimmunity damages islets of Langerhans I can't say, although in my son it was probably malabsorption, as we haven't picked up any autoantibodies in him as yet. I am hoping that by going gluten-free (and carb lite) we may have intercepted the diabetes, which we have in the family. I am not sure whether his pancreas/liver will be able to restore their function, but I am for now working on improving his nutrition the best I can hoping that maybe some improvement is possible. After all, if his neuro functions have improved, perhaps the rest will too. For us it's a very strong incentive to stay gluten-free, although I have to say I feel like a wicked witch trying to explain this to anyone who has gut issues but refuses to believe that bread makes them ill.
  5. if I remember correctly, the book Dangerous Grains mentions the link of celiac & lymphoma
  6. no, there was a drug trial in UK that went badly wrong in 2006 http://www.bbc.co.uk/radio4/science/pip/py6ln/
  7. thank you all, it helps to know just that little bit more, I will come back to report
  8. My son (age 15), gluten sensitive is due to have a mole removed on the face and after much debating the docs decided to use gas. We are due to have a pre-op meeting in the next 2 weeks and op at the e/Jan. Does anyone have any experience of this? Will he be affected more (I think he might be) - or less? Of course I will be asking the docs in case any injections are used for them to be gluten free, but I am also a little concerned about the anaesthetics effect on his recovering brain. Does anyone know how these things work inside the body, more specifically the neurological system? How will he be affected afterwards? Will he bounce back straightaway? Is there anything I need to do (as in alternative/supportive) options to help recovery?
  9. From experience with my son I know that gluten damage can affect digestive enzymes, let alone cause multiple deficiencies. He is about to have tests for pancreatic enzymes as he has a symptom of deficiency, I also know that he has low stomach acid and quite possibly some low liver enzymes. You could maybe get some tests to check those? Or you could try a digestive supplement to seeif it makes any difference? I also know that my son was found low in copper, which is a catalyst for numerous enzymatic processes in the body and I am slowly working through this and other deficiencies, hoping that I can restore at least some of his functions, knowing that sometimes gluten damage can be irreversible. I am also using a gentle homeopatic remedy to stimulate various glands, but this would only work if there are no deficiencies. just my take on this..
  10. thank you for mentioning this, spunky, I should have thought of it sooner!!
  11. That is MOST interesting.. 2 year gluten-free and my son's test recently are still showing high billirubin and high blood urea... (explains the tan?). I have just been reading a book on nutrition and the author (Jan de Vries) talks about benefits of sweating when it comes to removing toxins, aiding liver and kidneys. Oh yes, and my son also has deficient pancreatic enzymes - it all makes sense now. Does anyone know whether the liver/pancreas function can be restored in time?
  12. Hi Meg I know this thread is quite old now, but I would like to add my recent discovery on this subject. My son (age 15, gluten sensittive with neurological symptoms that have receded in the last 2 years of being gluten free) had some bloods done recently to check how his deficiencies have improved. Some have, but we discovered that his free copper is deficient and he is low in ceruloplasmin (copper-based enzyme). In the last year or so he developed stretch marks on his upper arms and thighs, which I have now discovered are not only connected to copper deficiency but also pancreatic enzymes deficiency! I wouldn't have connected the stretch marks to pancreas myself, but when I accumulate a stash of queries, I write to our gluten sensitivity consultant (Dr H in UK), who replied saying that some of his gluten sensitive patients have a deficiency of a pancreatic enzyme called elastase. I am now working on getting some tests done locally to assess pancreatic function in my son, in case he might need supplementing. Elastase plays part in connective tissue disorders, inc varicose veins, stretchmarks, aneurysms etc. I am also at this moment in time looking into homeopathy to revive the vital force that deals with connective tissue. Going back to copper, I am reluctant to supplement, as copper can be toxic and I suspect that my son does have some unchelated copper in his liver/tissue from pre-gluten days, so we try and concentrate on good diet for the time being. I have also read that high level of copper in hair is caused by coper toxicity, where body tries to remove it that way if the liver is overloaded or unable to chelate it internally (I think it was in Ellen Grant's book). It all seems to point to enzyme deficiencies - and I am sure there must be other enzymes that are affected too. Does anyone else have any thoughts/discoveries to add?
  13. I personally think that vaccines have a lot to do with triggering this in people who are genetically susceptible. Just like a severe illness, they overload immune system. After the trigger happens, it's impossible to go reverse it. Also, my dad used to work in the grain storage industry in Europe and recalls that when imported wheat was first marketed, it was stated that it has a much higher protein content that the local varieties. I have also read recently that Japanese are trying to resist introduction of imported wheat, despite similar high-protein content. But, as usual, marketing presents just one side of the story, they don't say anything about gluten, so unless someone is already familiar with the problem, they just head for the aisles full of wheatos' and the rest under the guise of high-fibre diet. Complete nightmare. What really scares me though is that the trend might include rice next. Another slogan that makes me want to throw up is "let's give cows to Africa". They have already introduced dairy farming in China and breast cancer is on the rise. just my thoughts..
  14. Sophie, great post! I would like to add that a few months ago I went to see Dr Hadjivassiliou with my son (due to ataxia). By then I had read many of his papers and other research, including from these pages. I had tears in my eyes when we met and I will be forever grateful to him for researching this subject and giving us his time. Before I found out about gluten, my son had been doomed by the medical profession to a progressive neurological deterioration. The improvement on diet has been quite amazing (on diet since Sept 2005 and still improving). We also found out that my son has DQ1, not celiac. I couldn't put him back on gluten for the sake of antibody test, because we have more than a decade of his life to rebuild (if that's ever possible). I had been compelled to start the diet as soon as I realised that it offered some hope, but I am also aware of many people who don't seem to understand the irreversible aspect of the autoimmune damage and hope that it won't happen, despite having symptoms. Like many on this board, I now keep Dr Hadjivassiliou's research to hand and educate anyone in the medical profession whom we go to see with my son. I still keep reading and still find amazing advice here. Thank you all for sharing your experiences!
  15. you say? Have you considered probiotics? The reason being that if you suffered some digestive disturbance in your gluten days, then almost certainly you disturbed healthy flora and might have overgrowths of unwelcome bacteria (there are many candidates; in my family members I have had experience of klebsiella (still ongoing) and h pylori and I suspect clostridia in my son). Some of these were treated with antibiotics, but I am using probiotics in my son (suspected clostridia) and I have noticed an improvement. But his symptoms were less gut - more psychology, although different bacteria have different symptoms. I have seen it well described in the book by Natasha Campbell-McBride "Gut and Psychology Syndrome", but there is plenty of other good probiotics literature around.
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