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Hi Everyone,
I'm hoping you can help me here. I have a friend who undoubtedly has leaky gut. Her symptoms are: autoimmune disease (not MS), severe migraines, fatigue, failure to absorb both iron and vitamin B, (she has monthly B injections and is having an iron infusion this week.) IBS and so the list goes on, If you Google the symptoms of leaky gut, she has pretty much every one of them. She has had IBS for almost 30 years!
Both my friend and I have read a fair bit of stuff but are finding the area to be vast and there are many contradictions. Some clarity would help. Given the severity of her symptoms, combined with the fact that she is underweight, plus I'm new to the whole microbiome thing, I don't in any way feel qualified to help her. What I believe she needs is a really good practitioner who is based in the UK. (North West would be good.)
This is where I need help. Does anybody have any experience/suggestions etc of who could help professionally? We are worried about the number of quacks that may be lurking!
Thanks in advance folks - all help appreciated.
Cinders xx
Cinders I would by pass thinking about gut and focus on getting rid of the western diet. Lose dairy, lose meat, go whole food plant based.
Forks over Knives will have lots of positive personal stories of getting into a far better health. Might even find some pointers to a support person practioner in the UK.
I don't see any mileage in trying to repair a gut being inflicted with the common diet.
I would also get tested for gluten intolerance as I know a celiac who went mega thin before finally diagnosed celiac.
Hello Cinders,

Your mention of your friend having problems absorbing iron and vitamin B started bells ringing in my head. I revisited the notes I had made while watching the Betrayal series hosted by Tom O'Brien last year and sure enough, there was an interview with Gisele Zandnan Godsard (Head of Department, Wolfson Medical Center, Holon, Israel) in which she said that low iron levels and difficulties absorbing Vitamin B could be a sign of coeliac disease.

This proposition is backed up by the article below:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820055/

Your friend might benefit by getting herself checked for coeliac disease? And/or get some relief by staying away from gluten?

As regards a practitioner who can help with leaky gut, IIBS and health issues more generally, pretty well the only Brit interviewed in the Betrayal series was Michael Ash, who certainly does appear to know his stuff. He appears to have retired from full-time practice and now runs
http://www.ihcltd.co.uk/company/michael-ash/ in Devon.
It might be worth contacting this company and asking if they know of a functional medicine practitioner in the North West?

Within the last few weeks I have attended (via cyberspace) the 2nd Microbiome Medicine Summit hosted by Raphael Kellman, and it is very much on my to-do list to post - here, under the Microbiome heading - some of the really important points I picked up. I'll regard your post as a spur to get my act together.

As regards the thoroughly miserable condition of IBS, a member of my family has been plagued with this for many years. Conventional medicine proved completely useless in providing any relief but we are currently on a winning streak with DIY solutions. Again, I will aspire to get a post up on this topic as soon as possible.

All best wishes to you and your friend,

Jette
The Gut Microbiome is KEY to optimal health.
The OMS site & forum are brilliant! Thanks, everyone! :D
Do not make any diet changes before being tested for coeliac disease, get that tested for first. That's two of us thinking coeliac.
Hello!
I've already posted a reply, which hasn't appeared for some reason, so apologies if you get two versions of this!
Thanks both of you for your comments, I've had a look at Coeliac Disease and I think you've hit the nail on the head - right down to the itchy rash.
So, my poor friend tops the list for people who have been let down by the medical profession and I am bewildered that we are here diagnosing her when she has been repeatedly dismissed and forgotten by various doctors and consultants. She does, however, have a referral to a gastro intestinal consultant, but I'm guessing that will be some months away, if not longer.
What I'm thinking is that, rather than jumping through the hoops of testing (stomach biopsy etc), she should rigorously cut out all gluten, and possibly also oats, and see what happens. She could follow this up with a visit to a good nutritional expert (I had a look at Michael Ash Jette - it's a good start point) to look at ongoing gut repair and an eating plan to meet her particular needs.
Does this sound like a sensible plan? Or am I missing something important regarding the testing?
Look forward to your replies.
Cxxx
Hello again Cinders,

It would be wonderful if your friend could achieve some relief from her symptoms!

My immediate reaction to your post was to agree with your proposal that your friend give up gluten. A quick visit to the Coeliac UK website suggests this is completely the wrong advice :/

https://www.coeliac.org.uk/coeliac-dise ... diagnosed/

The page above makes it clear that one should continue eating gluten during the diagnosis, or at least have it for six weeks before the test.

Your friend may be so fed up with the run-around that she has been given by the medical establishment that she prefers to go it alone - and not bother with an official diagnosis - or to have a trial period without gluten and then, once a date for the test is booked, re-introduce some gluten. Apparently, it is important for the accuracy of the test results that the person bring tested has had gluten regularly before the test.

If your friend does decide to try a gluten-free period, though, be warned that stopping a foodstuff that our gut has been used to dealing with can cause some short-term negative effects while the gut microbes and lining adjust to the new regime. I gave up gluten myself last year, not because I believe I am coeliac, but as part of an exercise to heal my gut (gluten is hard for our gut to deal with, and everyone, apparently, has greater gut permeability for 1-3 hours after eating gluten). The first three days were fine. Then things became quite unsettled for 10 days or so. I experienced bloating, discomfort, gas etc. etc. A quick internet search revealed that it's not at all uncommon to experience some upset while the gut microbes readjust to the new situation. One account I came across reported on a woman resorting to eating a slice of wheat bread to gain some relief! In my case it took about two weeks for things to settle down.

As for the need for self-diagnosis, join the club! My much-loved dad's death was totally avoidable, and down to medical incompetence and a missed diagnosis. I only learnt about my MS because I took myself off to see a neurologist privately after 5 years of ever declining health and three major operations, some unnecessary. The MS diagnosis had been on file with my GP for 13 years but she'd never looked at my records, even when I asked her if I might have MS! The IBS sufferer in our household had years and years of misery, innumerable consultant and tests notwithstanding, until we took matters into our own hands. He has now got his life back (a post on this topic coming soon - I promise). My mum used to suffer appalling attacks of hayfever that sparked off horrible eczema. The GP would dole out steroids that just served to make the next attack even worse. Thanks to a bit of research a simple supplement regime now means she has had no symptoms for two years.

I value the access to modern Western medicine but I also firmly believe that we can benefit hugely by taking responsibility for our own health and availing ourselves - critical faculties at the fore - of the amazing resources that are available online. Which is why the OMS site, and this forum, are so fantastic!

All the best,

Jette
The Gut Microbiome is KEY to optimal health.
The OMS site & forum are brilliant! Thanks, everyone! :D
Oh Jette, it sounds like your family have had a terrible time and it's really sad about your Dad - heart breaking. No wonder you do your own thing. Personally, I have found the NHS to be amazing when it's critical - serious accident, ambulance etc. When it comes to more general stuff, like MS, I think it's an absolute lottery depending on who you get. I have learnt to question all doctors and to go in armed with facts. Sad but true.
With regard to my friend, I'm thinking that she should just get on with giving up gluten because that's all that will happen in the long run anyway. There are no drugs that will help, so I can't see that she will be missing out. Plus, there can be falsely negative results from the initial blood tests, which will only confuse/delay matters and the poor girl will be brushed aside again.
Also, it's really helpful to know that things can get worse before they get better - so thanks for that!
I had a look on CoeliacUK and I thought it looked a pretty good site, if slightly reminiscent of The MS Society...
Anyway, I'll have a chat with my friend and see what she'd like to do. I know she will really appreciate the invaluable insights from both you and Veg, as I do too.
Thanks guys and I'd love to hear any more views on the matter. I'm going to keep you posted as to progress...
Cxxx
Hi Cinders

I have been gluten free for about 15 years. I was unwell for a number of years on and off with a variety of symptoms - and the medical profession couldn't help. As in this case - it was caring people with insight who suggested that I might be gluten intolerant - and I gave it up to see if it made any difference and haven't looked back. So never officially diagnosed. I can't think of any circumstances under which this could be a problem - and I am certainly not prepared to make myself ill by consuming gluten so that the medical profession can try to make a diagnosis. I really hope that it works for your friend, if she decides to go down this route.

Jette I am so sorry that you and your family have been through so much - particularly with the unnecessary loss of your dad - my heart goes out to you.

Joy
Thanks for this Joy. I'm glad you've found what works for you.
I'm confident that it will work for my friend too - it's quite exciting for her because she has been ill for years, certainly since I've known her. Life changing stuff eh?
Thanks again,
Cxx
There is giving up gluten and then there is coeliac.
If your friend is coeliac then it is reading labels knowing under what name gluten derived ingredients lurk. Eg glucose syrup in sweets can be wheat by-product derived. Coeliac bread can be expensive it is tougher to be careful then just giving up gluten/wheat. I'm gluten free and an not daunted by this as I don't do convenience food anyway and make from scratch but the friend could need support to make the changes to see it is possible (as we do) to cook from scratch and be equipped to travel and not go hungry.
Good luck and I hope your friend starts to feel better soon. If the gut has struggled for a long time you might need support to know how to actually rebuild the gut villi that has been eaten (lost), perhaps the coeliac charity has information on this.
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