Low Histamine Diet For MCAS and Gastro Related Issues

 

I am so so sorry, It has been months and months since I wrote in this blog but I thought what better way to start back into it than writing about something that has helped me almost miraculously in the last year.

The Low Histamine Diet. 

Last March (2017) I went to London to go to an appointment with the renowned Prof Qasim Aziz for serious gut related problems and weight loss stemming from my EDS. You can read all about that trip Here and you can read Prof. Aziz’s medical report and related advice from my visit Here.

My symptoms included serious weightloss (3.5stone) in a short period of time and strong constant bedridding nausea and vomiting that I was getting multiple times a day as well as excruciating gut pain which my doctors thought was stemming from the gallbladder and were considering operating on it before I traveled over and started Aziz’s amazing advice!

His recommendations then were as follows:

1. Slowly reduce Opioids as they are slowing gut function. Stop, Reduce and increase some medications as explained during the appointment.

2. For small intestinal bacterial overgrowth I have suggested a prescribed antibiotic twice a day for 2 weeks following which she should take a probiotic.

3. I would suggest that she sees a senior pain management specialist locally to consider splanchnic nerve blocks but it may also be helpful for her to have a spinal MRI of the thoraco-lumbar spine to make sure that there is no nerve root pressure.

4. I have given her detailed dietary advice and have generally suggested a diet low in sugar and grains but high in white meat, vegetables and healthy fat such as olive oil. Overall I have also suggested that she should reduce the histamine content of the foods that she eats and have suggested some resources that she can look at. I have also suggested Calorific drinks, vitamins and minerals such as vitamin C, B complex, omega 3 and chelated magnesium.

As soon as I got home I started the diet and calorie drinks straight away, I sorted the antibiotic and supplements a few weeks later but within 3 days of starting the diet I noticed huge improvements already so I was very hopeful!

It has now been just over a year on this diet and though I was only supposed to try it for 6 months I found that every time I reintroduced foods back into my diet that symptoms would start back up again so I have just stayed on it! It suits me and I don’t find it very hard.

So… Has it helped?

The answer is a resounding YES!

All my worst symptoms have actually gone, no exaggeration, My nausea and vomiting is now completely controlled, the severe pain I was getting in my gut that my doctors thought was all the gallbladders fault, is GONE! Actually gone, no more gut pain that had landed me in hospital multiple times, gone! It is just bliss!
My weight has maintained over the last 5 months at 52kg with is fantastic, no more constant weight loss!

As for my other symptoms? Yes they have improved no end too, though I still get dizzy I am nowhere near as bad as I was at my worst! I am so so happy it has worked for me, I can not recommend this diet enough. Though I will always advise that if you are starting any new diet or supplements etc. be sure to run it by your doctor first to be sure it will suit you!

So… How does the diet work?

It works by reducing inflammatory allergens that can make your digestive system swell and get raw as well as not function properly.

Find the diet plan that I follow Here.
How you follow it is as follows:
Anything that is a 0, you can eat as much of as you like!
Limit anything that is a 1,
and outright avoid anything that is a 2 or 3!

That is it! That is as complicated as it gets!!

The diet is restrictive enough that there are few grains, no sugar, no alcohol, no chocolate (Except some white), no tomatoes, no raspberries, no strawberries, no red meat except beef, nothing that will ferment in your gut to name but a tiny few.

However how successful it has been for me means that this restrictiveness is so worth all of it! I don’t find the diet hard at all and I find I am still getting plenty of calories daily.

It really has been life changing for me. It was designed specifically for people with MCAD so those of you who have MCAD or who think you may have it like me (Aziz thinks I may have it) or if you have Dysautonomia or EDS then this diet is for you!

As always get advice from your doctor before you start anything new, everyone is different and what may suit me may not work for you but if you have any questions about this diet, I will be delighted to answer them based on my own experiences from the last year on it.

That is all for now, chat again soon folks 🙂

Saturday Submissions – With MeggioMum

Todays Saturday Submissions is brought to you by MeggioMum A.K.A Heather, who lives with Pots and EDS, be sure to check out her wonderful blog about ‘Two cents from a Midwest Mom’, HERE.

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Potsy Mamas: What We’re Hiding

No, I’m not talking about marijuana, though that would definitely be an interesting article. I’m actually talking about coping with chronic illness while raising a family. Perhaps you’ve heard of Disautonomia, Postural Orthostatic Tachycardia Syndrome (POTS), or Ehlers-Danlos Syndrome. Perhaps you haven’t. But these conditions are very real, and being a mom of four (soon to be five) while living with them is a surreal experience full of both suffering and beauty.

Imagine for a moment that, like every mother on the planet, you have more things to do in a day than are physically possible to accomplish. Now imagine trying to tackle that when your body feels heavy like you’re wading through thick mud, and coffee only makes the feeling worse. You’re exhausted like you’ve just run a marathon… ALL THE TIME. Walking up the stairs is like mountain climbing without oxygen. You have to constantly write yourself notes and set alarms on your phone because your memory is swiss cheese. Complex situations are overwhelming because your brain is in a fog, like when you first wake up in the morning, except it never goes away. The mere act of standing makes your heart jump in your throat, and the smallest movements can dislocate a rib or hyperextend a knee. And you are in significant pain every waking moment.

What happens when you live like this every day is both heartbreaking and inspiring. A series of things start to unfold. The first thing to go is your house. Dishes and laundry pile up, as does random clutter everywhere. You forget to clean the cat box and don’t have the energy to mow the lawn. Your house starts to look like an episode of Hoarders and you’re too ashamed to invite people over or even let your kid’s friends inside to play.

Then goes your self esteem. You blame yourself for all the things you know you should be doing. You feel lazy and worthless. Thoughts creep into your mind like “I’m not trying hard enough”  “I’m such a burden” and “My family must be so disappointed in me.” You curse your body for not working right, and feel resentment towards both yourself and towards healthy people who live more mainstream lives. Your marriage suffers, both physically and emotionally, and you start to tell yourself that your spouse would be happier without you.

The guilt and self-blame are the worst when it comes to your children. You want to give them the world, and instead they don’t even bother to ask if you’ll take them to the park because they know that pained look in your eye all too well. You teach your children to be self-sufficient and independent; more out of necessity than anything else. You are proud that your teens can cook dinner, wash their own clothes, and fix their own bikes. You love how your younger kids can quietly entertain themselves outside in the fresh air without you hovering over them. But you also know that their childhood is flying by at lightning speed while you’re laying in bed trying not to throw up.

Then comes the judgement squad. Doctors not familiar with your condition, random people on the street, your kid’s teachers, coworkers, sometimes even your own family members. Everyone has an opinion on how severe your illness is and how you should be handling it. A lot of people don’t even believe your condition is real because you look “normal” on the outside. Your slurred speech and shaky movements means you sometimes get mistaken for an alcoholic or drug addict, and then treated with open disdain and discrimination.

Some people will be sympathetic, but insist you’ll be cured if you would just take more ginseng, or stop eating gluten, or do more yoga. My personal favorite is when they tell you to think positive and visualize yourself healthy.

I am a strong believer in homeopathy, clean eating, healthy exercise, and so on. But none of these things are magic cures that will stabilize the blood flow to my brain and keep my joints from dislocating. None of these things will keep my autonomic nervous system from misfiring like an electrical short. This is what leads to the final stage: the mask.

You start hiding your condition as best you can from the world. You grit your teeth and smile through the dislocations and spasms. When someone asks what’s wrong, you tell them you’re “just a little tired” instead of telling the truth. People get tired of hearing about your symptoms and start to tune you out. You avoid social interaction as much as possible, and start lying to cover up for it. (“Oh I’m sorry I missed the meeting, I had a flat tire”). You completely shut down in stressful situations because everyday life is already stressful enough, and you just can’t bear any more. You decide it is so much easier to put on the normal facade than wasting energy trying to make everyone understand. (Because 80% of them never will.)

I am trapped inside this body like a butterfly in a cocoon, except I don’t get to break free and fly.

There is an odd beauty to it though. This purgatory of inbetween health- not sick enough to be disabled, but not healthy enough to be normal- is like slowing down and living your life in stop motion. You learn to appreciate tiny moments like the sun warming your skin, the crinkle of smile in your daughter’s eyes, the earthy flavor of a hot cup of tea. You appreciate the people who stick by your side, and love them fiercely for it. You learn to let go of the things that don’t matter; like messy hair,  dirty kids, and judgemental people. You learn to slow down and just breathe.

We are moms (and dads) worth knowing.

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Thanks so much to Heather for submitting this post today, does this relate to you? How do you find juggling parenting and family life with chronic illness? If you relate, please leave a comment or consider following the directions below and submitting your own post to share!

——— Wanna Be Part of Saturday Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any word count) in relation to your chronic illness, or how a relation/friend/patient with an illness affects or interacts with you, etc. all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like just be sure to put your details in the email so I can respond to you personally 🙂

You can send your submissions to: irishpotsies@gmail.com

Dysautonomia Diagnosis Update – 2014

As May is EDS Awareness month and I was asked to do an update on my Diagnosis story to share with you all to try to raise a little awareness of the condition, here I am once again, another year later, 2014 already and lots has indeed happened in the last year that I can add onto the overall diagnosis story.

If you would like to read 2013’s update and the full background of my diagnosis, you may find that here.

So I will give you a brief background to get going, then the updates from the last year or so.

In April 2011, after nearly a month in hospital and numerous medical tests,  a Tilt Table Test confirmed a diagnosed of Postural Orthostatic Tachycardia Syndrome and Neurocardiogenic Syncope also called Vasovagal Response.

In October 2012 I was diagnosed by a Reumatologist in Cork that I had Ehlers Danlos Syndrome Type 3 Hypermobility Type, which in turn would be the organic cause of the Pots.

My symptoms and signs at the time, and still do consist of Syncope (Fainting) sometimes with no breathing and with seizure like activity, It has happened countless times now, and some of the serious fainting without breathing has caused short term paralysis in my legs and lasting neuropathy. I have Very Low Blood Pressure, Dizziness, Severe Nausea and tummy/gut trouble and vomiting, Excessive fatigue, Costochondritis, Easy Bruising, Blue Sclera, Severe pains in my Joints mainly in the lower limbs, back and right shoulder.

I take 18 tablets a day, 8 different kinds spread out over 3 times a day.

Last year saw a big improvement in my health that I was just feeling well and fit enough at the start of the summer to think about applying for jobs once again, then in April 2013 I had an interview, they called me for a second interview and I landed the job. It was perfect. I worked from home, on a set schedule where I had to sign in online at a certain time and be available to give tech support to customers calling in. All tech was provided, I won’t name the company but needless to say, I adored the job. I worked hard, I was actually doing really well and made lots of friends.

Everything was going amazing until my Pots started acting up, sometimes I had to put people on hold as I hacked into a bucket! The pain in my pelvis, hips and lower limbs became so much that crutches no longer supported me well enough.

In August I was in a wheelchair, In September I was admitted to hospital for 11 days for investigations and pain management. The specialist advised that I didn’t return to work.

I was in a little shock I think, the job was just working out, then out of nowhere…
We had to take time to let it all sink in, it did, we had our ‘Why Me?‘ moment, yes, I just did that! 😀 and then I realised I had to sort everything out, like work, social welfare, adaptations, treatment like Physio & Hydro Therapy, Occupational Therapist, Pain Management, Learning to live needing a wheelchair, for now at least (I live in hope, but I’m not delusional!!) 😉 :p

There was just one morning after I got home from the hospital and had let it sink in where, I just said, screw this, it’s not going to do it’s self! Keith and I got to making lots of phonecalls and got an Occupational Therapist and Physiotherapist on the go, I rang to end work and get all that sorted and only started going about the process of applying for certain social welfare and home needs which to my surprise had been cut substantially from what had been expected. Only in recent weeks have I been told that I will not hear anything back from the Housing Adaptation Grants (if at all) until ‘at least’ 2015!

My Occupational Therapist is amazing, so utterly helpful and always tries to do what she can, My physio is also very helpful but unfortunately I only get to see him roughly once or twice a month. I had started Hydrotherapy, found it very helpful but then had a syncope in the pool and that was the end of that! So for now, I am not getting much in the way of physical progression with my legs, though I do hope to try and get referred to Harolds Cross in Dublin, where they do intensive, in house, Occupational, Physio and Hydro therapy, while you are accommodated at the hospital for careful monitoring, but we will wait and see!

What a lot of people don’t realise is that, there are NO Dysautonomia specialists anywhere  in Ireland, some have a bit of knowledge around Pots but not EDS and NONE have been trained specifically to treat these conditions, so treatment is more of a mix of everything they think you need, a stab in the dark, and then there is no communication between the different doctors that are treating you. The closest specialist Autonomic center and Qualified Specialists in the field of Dysautonomia are in London and the HSE simply doesn’t want to know about sending you over to get the treatment you need. They are also refusing the Travel Abroad Scheme to the majority of people who apply for it. To go over privately is simply not an option for the majority of us as we simply cant afford it.

Since being diagnosed with Pots originally in April 2011 and EDS in October 2012, I still faint, I also have syncopies where I can have seizure like activity and I can stop breathing with all faints, Some of which have left me with paralysis and long term muscle neuropathy. I constantly have pain and often severe gut and tummy trouble with the EDS and it’s complications. I am now in a wheelchair a year come August and I have had many ambulance rides, rushing me into emergency and I still regularly have many hospital stays, visits and appointments.

but you know what? I count myself lucky! Things could always be far worse and I am very lucky and endlessly thankful for certain people in my life, Namely, my husband, I would be truly lost without him ❤

My family and friends deserve saint and knighthoods for their patience with me as I can never commit to anything, but such things are out of everyones control.

For now I keep myself busy and roll with whatever is thrown at me!

Thank you for reading my story 🙂