
SurreyGirl
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Or at least point me in the right direction for research.
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).
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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
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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.
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if I remember correctly, the book Dangerous Grains mentions the link of celiac & lymphoma
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no, there was a drug trial in UK that went badly wrong in 2006
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thank you all, it helps to know just that little bit more, I will come back to report
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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?
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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..
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.... I took milk thistle for a while...
thank you for mentioning this, spunky, I should have thought of it sooner!!
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... It seems to get better if I work out or shower...
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?
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I have had many hair analysis done on my daughter and they all come back VERY high copper, low zinc (which is a copper antagonist). All the nutritional-type doctors who did these hair analysis (over the years) put her on extra zinc to bring down the copper.
BUT, it appears that there is just as good a case that she is actually low copper (at least metabolized copper) that in essence copper is not being utilized by her body so it is storing in her hair and giving a false reading. The question is, if she is actually short copper, she needs it to help with her weak vein walls....but how do I know for sure and do I risk giving her copper with those kinds of hair analysis readings. And, if I did supplement copper, would she even be able to metabolize it?
To make matters worse, she is a nationally ranked skater, so she puts a lot of pressure on her legs. She lives for skating and it is her dream to continue skating; but we have got to solve this problem if she is to realize this dream.
Does any one here know of information related to this topic? I would be eternally grateful for you input.
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?
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maybe we have also done something to our foods or our environment that has increased the incidence of the disease being triggered in people that are already genetically susceptible...
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..
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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!
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you say?unknown digestive stress..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.
you say?
oops, forgot to add that B12 is made by some of the good bacteria in the gut. If those are wiped out then you would need to supplement B12.
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.. a combo of Omega 3,6,9 ..-
Thanks Nevadan, I agree with you in principle, although a really strange thing was that when my son was tested before any supplements, he was found to be omega 6 deficient and in low ranges of omega 3.
As he doesn't eat fish, I can only guess that his omegas must have come from being almost vegeterian and/or some molecular/structural difference in absorption of either omegas. I'd say best to test.
The reason why we supplement (3-4 capsules a week only tho) is that he was starved of these fats for a decade of his young life and still needs to build the brain. And, after all, they are essential fats.
But what really gets me is that many nutritionists are recommending mega-doses of omegas believing that intake = absorption, without looking at malabsorption. This goes for many of those disorders that we here know have a clear link to celiac/gluten sensitivity and malabsorption. Some people say that they get D after taking omegas, which points to malabsorption.
I will look out for the book you mention.
And - oils do need to be taken after the meal, not before, this is to do with the order of digestion solids and liquids (this was an answer to another poster).
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Interesting post on Omega 3s...
Anyone any thoughts, any experience of taking Omega 3s plus the other supplements and getting any interesting results? I'm interested in the immune system especially, since my brother has cancer of the immune system - Chronic Lymphocytic Leukaemia. Which is more common in guys, incidentally.
Hi Sandra
Yes, Omegas were the first point , where my research started to take off, it was before gluten-free though.
In my son (DQ1) it cleared up extremely dry skin and improved mental abilities, concentration and so on. I read "Fats that kill, fats that kill" by Udo Erasmus and then met him later. Although the book is technical in places, it reads well and covers some medical conditions (can't remember whether it mentions celiac). See below for the link to his website.
We have moved on to gluten-free and dairy-light since, but continue with Balanced Omega supplements(3, 6, 9). It was quite obvious that my son was malabsorbing fats (and fat-soluble vitamins with them), but the reason was gluten (wish we knew then!).
However, going back to your last point, I hope your brother takes probiotics? A lot of immunity depends on a healthy digestive track and the right flora. After omegas and gluten-free, probiotics were the next stage where a visible improvement happened in my son.
Udo's website on omegas resources is here: Open Original Shared Link
He does have some products too, although we buy ours locally (UK) and we also use flaxseeds.
Anna
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...ACUTE RETINAL NECROSIS, and that it is very serious and rare. Basically, they told me the chicken pox virus, came out from being dormant and attacked my eye causing the retina to detach... ...This disorder/disease(I don’t really know what it is labeled as), can affect healthy individuals, but many times it can affect people undergoing chemotherapy or HIV positive people or someone with a decreased immune system. I got tested for tons of stuff and everything came back negative/normal, except one antibody was high, and they figure that was from celiac. They said they do not think celiac caused it and said that diet does not affect the immune system as much as I would think.... So my question to you is, have you heard of celiac causing this disease in you or anyone you know? This is supposed to be pretty rare, so it would be very interested if anyone else was affected.
Hi iluv.., welcome - and what a scary experience you have had!
I have been recently reading a lot about immune complexes and this might help to add some input into what might potentially be going on (just ignore thyroid reference in the link name and look at the link):
Open Original Shared Link
You might want to search some more about these immune complexes, also under tissue-bound immune complexes (in pubmed or similar). My understanding is that gluten (and other antibody events) can lead to a build-up of these complexes in the blood stream, then they either flow about or get attached to tissues and if they do, they lead to inflammation and damage. My interest stemmed from looking into an autoimmune inner ear disease, where there is a loss of hearing over a few months, this is in a genetic condition that has a faulty DNA repair, thankfully this was not my son (yet), although he has the same genetic condition, so I am naturally concerned and trying to intercept (avoid?) the problem. I am actually writing to my son's neurologist to find out how the autoimmune load in the body can be accurately assessed and/or removed. I have heard about plasmapheresis, but I have no idea whether this is at all a practical solution for my son as we haven't had any tests on this yet.
I also want to find out whether this attachment to certain organs is random or is it due to other factors - protein similarity perhaps?
I suspect that if you are celiac, then the prolonged presence/build up of these gluten-specific complexes was probably significant. It's interesting though that the problem occurred after you went gluten-free. I wonder whether anyone is knowledgable enough to link this somehow?
In my readings, I have also come across mention of lectins, that they increase stickiness of these complexes (bean family, peanuts, grains too). We are trying to limit those (already cut out gluten and most dairy).
Sending you my best wishes.
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... very depressed...
Hi JB, please look into a good magnesium supplement: magnesium deficiency can be linked to depression and with celiac affecting absorption of various nutrients, magnesium is also affected.
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I want her to feel better obviously - but I don't want to spend the rest of her life convincing people she's sick and that I'm not a nutcase mother.
Thanks
Heather
Hi Heather
You are not alone living in this "parallel" world.
My son is 14 and whilst he had various symtomps all along, when he started getting neurological problems, I was so glad that I found out about gluten that we went on the diet overnight just to see what will happen - and the change was staggering. With all the blood tests inconclusive, I managed to convince the pediatrician about diet improvement and he accepted this. We eventually managed to get the HLA typing and this was the only thing that confirmed the susceptibility apart from diet (DQ1).
Even with that I don't really run around with a doctors certificate, because most of school etc places accepted my written note (we are in UK tho).
I sometimes think of it as a lifestyle choice, rather than a medical condition just to keep my head sane. In many places you are better off providing packed lunch than relying on someone else getting it wrong. I also realised that replacing gluten stodge with gluten-free stodge is not the answer either, so we never really bothered with prescriptions, becuase I try to keep grains to bare minimum and use lots of veg instead.
Gluten intolerance is so unreal to many that I don't even bother to explain that in depth anymore to all and sundry, only some. And I always thank my lucky stars that led me to discover gluten evils.
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Hi Carla
On a very similar subject, I have just read this book, really, really good reference, although not just about schizophrenia. In fact I am thinking to maybe consult this doctor because a lot of what she writes is relevant to my son.
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The article pdf below the credits is a very short outline of what it's all about. This goes far beyond celiac and builds on Elaine Gottschall's achievements.
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Hi all
I think I am beginning to understand what's going on when we eat those food that cause sensitivities.
Could it be that there is a further blood group connection? I am AB and don't suffer obvious symptoms, but my son (DQ1) has group O and gluten sensitive. He also has a natural dislike of the foods that happen to have most checks in the table..? (This is not just about blood group diet, although I think there is some relevance.)
The interesting thing is that O appears to have most sensitivities and it's termed as most reactive, clearly not only when it comes to transfusions (agglutination on contact with other blood types), but also in contact with typical allergen foods. It looks to me that those immune complexes caused by increased level of agglutination could well lead to the many symptoms seen in reactions to allergen foods.
I would be interested to see whether others with group O suffer from symptoms that are severe or quite extreme?
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I am very tired and my muscles feel weak as well. Got hit by depression last week and it is not going away.
Stopped being on Gluten two months ago. My thryoid level tests came back normal although my thyroid is enlarged again. (Hashimoto)
I only have gluten sensitivity, not Celiac Disease...
hi
Have you considered supplementing zinc? I have just read a brilliant book (sadly out of print) by Ellen Grant (Sexual Chemistry..), who points out at many occasions the detrimental effects of zinc and magnesium deficiencies.
PS. My son is also gluten-sensitive (DQ1).
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The remedy is described in the DAN protocol. Open Original Shared Link. This therapy is individualized on a case per case basis but the overview is basically the same.
This makes sense! I have worked out about a third of it myself already, even though my son doesn't have an autism diagnosis, but I strongly suspect that he is gluten sensitive after the response to gluten-free diet.
I have picked up on malabsorption of fatty acids and fat soluble vitamins, but unfortunately the nutritionist we saw only went as far as prescribing multidoses, which I wasn't quite comfortable with. My gut feeling was right: he was malabsorbing because of gluten, not diet!
Yes, I agree that it needs a leap of faith. I am very sceptical of the doctors who only try to cover up symptoms, so I really need to trust my guts. But now that I have dealt with reason's for malabsorption, the only way is up - just need to find the right doctor here in UK.
My son has some autistic traits, his eye contact and understanding of the world around him has tremendously improved, but I can see that he is experiencing mental blocks. For us it's been a long journey already, but it's been worth it so far.
Many thanks for your help!
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There are hundreds of medical studies that have Open Original Shared Link.
This is a very comprehensive resource, thank you shayesmom!
What got me thinking is that I was reading how serious breaching the mucosal/skin barrier and injecting anything into the blood stream can be. Also the fact that many resources mention not only heavy metals but the reaction to the protein: many vaccines use egg culture or peanut derivatives - hey bingo, we have egg and peanut allergies. Apprently even snake venom is not poisonous when ingested, although it will kill if injected (I guess it would still kill someone with leaky gut!).
In the UK there is a recent news item when 6 men fell seriously ill (one with major organ failure still on life support currently) after a trial of vaccine against leukemia, arthritis and MS.
If someone's genetic makeup makes them susceptible (and you would never know until you are exposed!) then the overload of immune cells can easily become too much. I am now quite glad that we have declined some of the boosters and hib - and I will not be rushing to get any flu jabs now either.
Obviously, reversing this is another matter and who knows whether it's even possible.
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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!