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Diet, food, equipment Ask questions or pass on ideas about diet, food and equipment

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Old 09-10-16, 10:37 PM   #1
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Join Date: Jul 2012
Location: Shrewsbury
Posts: 214
Default Just putting it out there - Dairy foods

Hi all, after a very rare visit to my GP because of dizziness I thought I would go through all of my woes whilst I was there so I told him how difficult it had become passing my stools in the morning and the unusual forward position over my toes I was adopting in order to go and the 30 minutes I needed to attend to it. Nothing, a complete waste of time, just a lot of head shrugging and asking re. My fluid intake, so I decided after looking on the internet at what foods cause constipation I would stop eating dairy and changed to soya milk. I have been doing it for 2 weeks now and what was becoming a lengthy anxious filled occasion is now a fleeting what is all the fuss about occasion each morning. I shall never eat dairy products again. Best wishes. Lily
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Old 10-10-16, 12:26 AM   #2
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Location: Hastings, East Sussex, UK
Posts: 1,152
Default Re: Just putting it out there - Dairy foods

Originally Posted by LECS View Post
... so I decided after looking on the internet at what foods cause constipation I would stop eating dairy and changed to soya milk. I have been doing it for 2 weeks now and what was becoming a lengthy anxious filled occasion is now a fleeting what is all the fuss about occasion each morning. I shall never eat dairy products again. Best wishes. Lily
Hi Lily

I was taken to A&E 3 years ago with outrageous constipation. Since then I've tried various alterations in food and drink. For the past 6 months I have replaced cows milk with Soya milk and Almond milk - I can't say for sure but since the change things have certainly changed for the better. I only read a few sentences now rather than a full chapter.

New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
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Old 10-10-16, 08:41 AM   #3
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Location: England
Posts: 2,391
Default Re: Just putting it out there - Dairy foods

Not connected with toilet time as such (That's a whole different poem - The Dyno Rod) but I do wish GPs etc would look at HD as an opportunity to better monitor their patient rather than just apply what may, or may not, apply to everyone else. You sound as if you have been fobbed off LECS, and had to find your own treament

The Check-ups


By the time my husband needed medication and dietary intervention, to help cope with the changes taking place in him, our communication was becoming more difficult. I use the word ‘our’ as opposed to ‘his’ as communication is always a two way thing.

My husband may have found it harder to express himself due to physical; Cognitive; and emotional problems, but I also found it harder to listen due to my own tiredness and confusing the signals being given by him. Couple with that my need to adapt my ways of talking; listening; intuitively knowing things, and also change habits of a lifetime (talking fast/doing everything at 100 miles per hour – see ‘The Rushed Hush’).

If you have read my poem ‘The Cocktail’ you will have already gathered I hold a suspicion of drugs being dished out without enough thought to their side-effects. Look at any warning leaflets and labels given with medicines or supplements and you will see any number of potentially harmful physical and psychological changes which may occur as a result of taking.

It’s all very well if we can feel and express the side-effects in ourselves, but what if we couldn’t because of our disease masking them? Or worse still... What if we could feel/sense changes but have no way of getting it across to someone as we can’t communicate our physical feelings or worries? Without being able to say “STOP” the unintentional torture goes on!

When giving my husband new medicines and supplements, I took pains to chart as much as possible his reactions/changes (temperature; bowel and bladder movements; skin changes; irritability; sleep patterns etc). However, it would have been wise to have pre-empted things by asking for a full blood and allergy test before it got to the point where I was having to second guess if my husband might be reacting to/allergic to what was being introduced to his body.

Take a simple - normally harmless - thing like milk for instance... To help weight gain we were given a milk based protein drink. Overnight my husband was being filled with a high dose of milk and minerals etc. He had not expressed any intolerance before when drinking milk, but that was not at the same quantity. A drop of milk in his hot beverages and a small amount with his cereal etc. I did wonder after a while when he showed a rash if he had an intolerance to cows milk. Should I have switched to goats milk boosting the lack of calories in another way? Wouldn’t it be great if those at risk of HD were given a full health and allergy screening as part of their general well-being checks at – say – eighteen?

And then there’s the matter of blood tests. Because my husband had been so healthy before HD took hold, and not needing blood checks previously, we found there was no recorded base-line data on what his normal blood counts would be in areas such as sodium; potassium; creatinine; calcium; alkaline phosphotase; gamma glutamyl; white blood count; red blood count; albumin; globulin etc. Changes in such areas are vital to giving clues to what may be disturbing a body and what needs treating and/or balancing.

There are ‘normal’ ranges which are used to try measuring whether a person has a particularly higher or lower count than should be expected. However, it differs from person to person where they may naturally be higher or lower anyway, much like body temperature. What about the changes to blood with regards to medicines and supplements? Unless all introduced toxins and dietary changes were screened out it would never be easy to see what is ‘normal’

There are other things to consider... When the disease had progressed to the point where blood tests might be needed for this and that, my husband had developed a fear of needles and nurses in general. This made it hard to do tests and extremely distressing for him. I wish we had at least a file showing what my husband’s system was like before HD started taking over, and before I started giving him Tetrabenazine; protein drinks; cod liver oil; creatine; pure cacao etc. That could have reduced the amount of tests and saved time for someone so vulnerable and terrified at what was happening to him.

It’s a simple little tablet,
And it’s there to help your pain,
But that tablet in your tummy,
Has set off your sweats again.

And the food that I just gave you,
Whilst it won’t do this to me,
Will because it’s so abundant now,
Cause you a rash or three.

Our confusion doesn’t help us,
When you try to tell me “Stop!”
But I miss the vital signals,
As blood pressure starts to drop.

And the doctor looks at me for clues;
His records do not state,
If your vital signs are up or down,
Or just your normal rate?

So in dark we keep on working,
And the needles scare you so,
But without the map to plot our start,
We don’t know where to go!

Taken from Curse in Verse and Much More Worse
I tried.
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