Esther Rantzen's daughter had Celiac all along

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Even with the little amount of support I get from the NHS, I was at least tested for both HIV & Celiac's disease within 6 months of the glandular fever which led to my ME diagnosis.

This woman has had access to the best health services that money can buy and she didn't get tested :eek:

I believe Ms Rantzen has done more harm than good to the perception on ME in the UK.

We are all looking for a high profile figure to stand up for our cause, but this woman isn't it. Her daughter has now been 'cured' 3 times from ME, and now she discovers it was Celiac's all along. What sort of message does this send out to the uninformed public - just stop eating bread and get out of your beds :rolleyes:
 

richvank

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Hi, all.

Concerning gluten, it should be noted that a person can be intolerant to gluten and casein and not produce antibodies to them.

The following explanation is from Prof. Richard Deth, who has been active for several years in autism research:

"Gluten and casein-derived opiate peptides inhibit uptake of
cysteine by GI epithelial cells, making more available to gut organisms,
potentially shifting the flora toward cysteine-requiring organisms and strains.
Skin and IgE testing of gluten and casein does not reveal their GI effect to
inhibit cysteine uptake. The latter may promote IgE in some individuals, but
gluten and casein intolerance is not necessarily allergic.
There are digestive enzyme products containing the proline-directed dipeptidase
DPPIV, which breaks down the opiate peptides and may ameliorate their effects."

I think that it's likely that this mechanism can help to lead to a couple of other features that
are important in ME/CFS: glutathione depletion and production of hydrogen sulfide.
Cysteine is usually the rate-limiting amino acid for the production of glutathione, so
if its absorption by the gut is inhibited, that could help to deplete glutathione.

Dr. de Meirleir has identified the production of hydrogen sulfide by dysbiotic bacteria
as an important mechanism in ME/CFS. Some bacteria are capable of producing
hydrogen sulfide from cysteine.

The bottom line is that if a person has glutathione depletion, gut problems, and a positive hydrogen sulfide urine test, and if they have not tried a gluten-free, casein-free diet, they should strongly consider it.

Best regards,

Rich
 

busybee

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From the same piece, Emilys comments on LP:

In the years since my recovery in 2006, I've been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to 'fake it till I feel it'.
 

Enid

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Just to add here - I find it odd - my bowel problems started long after the neurological (vertigo, cognitive decline then muscle failure) Have changed my diet though and not found it cured. But wish her well. Kenny Meileir makes the very best sense for me.
 

paddygirl

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Mommy dearest

From the same piece, Emilys comments on LP:

In the years since my recovery in 2006, I've been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to 'fake it till I feel it'.
Or in other words, lie about how how ill you are because so many people have an investment in your 'recovery'.

Esther is so brainwashed that ME is mental illness that she can't see the wood for the trees. I do feel for her daughter.:(

Paddy
 

xchocoholic

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Seeing this is nothing new to me or most of the celiacs I know. I didn't have much in the way of digestive complaints for first 14 years of my CFS/ME. I ate at Taco Bell, McDonalds, etc at least once a week without any real problems. Some gas, etc but nothing dramatic. My docs didn't look for celiac disease until I requested it and then I got turned down. I had to insist on it and my doc begrudgedly referred me. That was months after figuring out how much better I felt on the elimination diet.

Here's a thread I just posted about how gluten affects our bodies. This video is well done but they're still not calling celiac disease one manifestation of gluten sensitivity like some other doctors are. It's a step in the right direction though ...

http://forums.aboutmecfs.org/showth...Fiction-amp-Controversies&p=156190#post156190

I'm happy that her daughter recovered ... I still have CFS/ME with orthostatic intolerance and PEM being my main complaints now. Most of my symptoms are under control via diet and a few supplements. I certainly wish there was another way but for now, dietary interventions are necessary. Minute amounts of gluten are still causing me to get myoclonus and insomnia. tc ... x
 

WillowJ

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I've tried gluten free, and milk-product free, but not sure if I tried them both together for a significant amount of time.

My digestive problems began when I sprained my back and neck in a car accident. I have to wonder if it's nerve-related.
 

WillowJ

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From the same piece, Emilys comments on LP:

In the years since my recovery in 2006, I've been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to 'fake it till I feel it'.
That is so sad. I'm glad she finally has a correct diagnosis.
 

currer

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Hi all,
Interesting that this should be posted just now.
I have just started a gluten-casein free diet since reading how it is used in autism and how the autistic children have such severe gut problems. (Given that there seems to be some link between ME/CFS and autism.)
My gut problems have gradually worsened over the years until I have to do something about them.
Initial reaction to this diet is that bloating and wind has stopped and I seem to be loosing the excess water I had accumulated on my body.
So good initial results.
Incidentally I dont think this means I have had coeliac all along, I think it is a feature of ME/CFS.
 
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Even with the little amount of support I get from the NHS, I was at least tested for both HIV & Celiac's disease within 6 months of the glandular fever which led to my ME diagnosis.

This woman has had access to the best health services that money can buy and she didn't get tested :eek:

I believe Ms Rantzen has done more harm than good to the perception on ME in the UK.

We are all looking for a high profile figure to stand up for our cause, but this woman isn't it. Her daughter has now been 'cured' 3 times from ME, and now she discovers it was Celiac's all along. What sort of message does this send out to the uninformed public - just stop eating bread and get out of your beds :rolleyes:
Mrs. Rantzen is a silly b**** and I hate everyone who thinks they have this but don't
 

Ian

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Amazing medical incompetence .. 14 years and they couldn't figure it out. Not really a surprise considering doctors aren't even taught nutrition ! Then there is the lighting process. There are no words to describe such incredible quackery. I bet Phil Parker has made himself a rich man off the back of sick people.
 

Mark

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Mrs. Rantzen is a silly b**** and I hate everyone who thinks they have this but don't[/QUOTE]

Thank you - in a way - for expressing this appalling attitude of yours so clearly and frankly.

I hope that when you read it back, and actually think about what you said, you'll realise how completely misdirected your anger is. You are choosing to blame some of the other victims for the crime, presumably in an attempt to lash out at somebody - anybody - who you can blame for your own suffering. I hope you'll think more carefully about who you are targeting; I imagine your feelings on this subject haven't really been thought through...

It's rare that anybody says this in explicit terms, but there are certainly a lot of patients out there who seem to hate all the other patients who they think have a different illness to their own, and blame them for being diagnosed with the same label. How on earth you can possibly justify that attitude of hating other sick people, I can't begin to imagine. But by stating this explicitly, you gave me an excuse to highlight and analyse what seems to be an attitude held by a significant minority of the online community, which I've done here:

http://forums.aboutmecfs.org/showth...-s-differences&p=156553&viewfull=1#post156553

It's my hope that anybody else who feels the same way - consciously or unconsciously - will reconsider their attitude and realise that they are directing their justified anger at a completely inappropriate target.
 

Mark

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Just have to make some comments on the Rantzen news, which I find absolutely amazing!

This story illustrates so much - and this breakthrough for the Rantzens could perhaps prove to be a watershed moment for us. The Rantzens are a pivotal family in the public face of ME in the UK, and as we know, Esther's misguided approach has been immensely harmful to the cause of people with ME in the UK. But maybe this personal breakthrough for them could end up being a breakthrough for us too, indirectly...

Several things jump out...

- If the Rantzens are now saying "Emily has celiac, not ME after all", then that's got to be good news for us. It means that all of Emily's CBT and Lightning Process "cures", by implication, weren't really cures at all, but just self-delusion. It also means they weren't even "pseudo-cures" of ME, but "pseudo-cures" of something else. This has to be a good thing for all of us, if the Rantzens understand all of this now, at long last...sometimes, being told something repeatedly is not enough - you have to see it with your own eyes...

- But HOW ON EARTH can it be that a powerful campaigner, with money and contacts and medical resources, sees her daughter remaining ill for 14 years with alleged ME, and never tries gluten-avoidance!!! This is only possible, surely, by rigorously avoiding any genuine ME/CFS physician and any decent alternative practitioner! I can't think of any half-decent practitioner or physician I've seen who hasn't mentioned gluten on the list of things to try avoiding; it's one of the first and most basic things to try. To me, it's simply spectacular that somebody in Esther Rantzen's position can be discovering gluten-avoidance right now!

- Isn't it revealing, too, the way that Esther highlights the responses of physicians to the news? An elderly surgeon confidently assures her that the fact that the rash has now gone just means that it never existed in the first place. A trainee doctor explains that actually it's now well-known that celiac disease can cause such rashes...when you hear this sort of discrepancy, the scales start to fall from your eyes...

- It has to be good, surely, if Emily does indeed have celiac disease, because surely that discovery would have to teach Esther that people diagnosed with ME/CFS in the UK frequently have all kinds of other conditions which the medical world simply can't be bothered to investigate. ME/CFS is a diagnosis which is used in the UK to deny medical treatment and research to sick people. It's a way of saying "I give up". Hopefully she realises that now. Hopefully she will now turn to campaigning based on the understanding that the way the medical establishment has failed her and her daughter is a scandal.

- I'm very, very sceptical, though, that it will turn out that Emily does just have celiac disease. Very many of us with ME develop gluten intolerance later during the course of our illness. This is clearly something of which the Rantzens are completely and determinedly unaware, because they have clearly completed avoided all the responsible ME/CFS physicians - they've even positioned themselves in strong opposition to the very people who would have told them to try avoiding gluten! - and instead have trusted the quacks who dominate ME/CFS in the UK. But unfortunately, as badly-advised as they are, this would suggest that all they have now discovered is one of the factors in Emily's illness...and the next round of news about Emily, I suppose, will be filled with yet more confusion. Even so: any kind of breakthrough like this is hugely valuable to the individual, and so hopefully will be for us as well. If the Rantzens have now learned, through their own experience, of something that makes a big physical difference to Emily's suffering, which they had to figure out for themselves, which turns out to be well-known to patients and 'controversial' doctors but unknown to the mainstream and even vehemently denied by the mainstream...then welcome to the club! Will this experience make them angry too? We will see...

- Discovering a genuine, undeniable physical explanation for some of your symptoms is a powerful moment for all of us. When those undeniable physical observations are then denied by one's physicians, that becomes a defining radicalising moment as well. That's the moment when one suddenly knows - rather than just suspecting - that one's trust in the medical world has been totally misplaced. You see them sitting there, confidently and definitively telling you something that you know is definitely not true...and you can't come out of that experience unchanged by it: you have your proof now, even if it only works for you personally and no doctor or scientist will accept it as "admissible evidence". So: whether Emily does or doesn't have gluten intolerance confirmed officially, I would hope that either experience would add up to a shocking and eye-opening revelation for Esther.

The bottom line is: however the Rantzens' personal story unfolds from here, it just seems to me that it has to be good news for us. Esther seems to be set to learn the truth at long, long last - one way or another. Whether Emily has purely celiac or other intolerances as well; whether she has ME or not; whether the celiac disease is confirmed by physicians or not...whatever happens, the story of her daughter's 14 years of misery, dramatically resolved by something bleedin' obvious that the doctors should have identified, and should have advised on...that surely, surely, has to be a radicalising experience.

If only Esther could figure out some of the right targets to focus her campaigning energy on - the very people who are close to her, who surround her, who she trusts and who have been misadvising her and sustaining her family's suffering for all these years - she may yet turn out to be a formidable ally indeed, at the end of the day, which would be a most welcome change from the role she seems to have played so far...
 

ukxmrv

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- But HOW ON EARTH can it be that a powerful campaigner, with money and contacts and medical resources, sees her daughter remaining ill for 14 years with alleged ME, and never tries gluten-avoidance!!! This is only possible, surely, by rigorously avoiding any genuine ME/CFS physician and any decent alternative practitioner! I can't think of any half-decent practitioner or physician I've seen who hasn't mentioned gluten on the list of things to try avoiding; it's one of the first and most basic things to try. To me, it's simply spectacular that somebody in Esther Rantzen's position can be discovering gluten-avoidance right now!
That exactly.

Fantastic post start to finish Mark :)