Truly #Gluten Free Symptom Scores Coming Down

  Thought I would share a bit of good news with you today. My scores are coming down!

Here’s what I said recently in the Gluten Migraine post:

The migraine used to score about 8-10 on the pain scale (10 being the worst, but I now think of it as 8 as I hadn’t experienced the jaw bone pain then with the gum infections!!). The average one now is about 2-4, with an occasional 6. They used to last 4 days and now last 2 days – again, almost on the dot of 48 hours, it just goes and then I need to sleep. A lot. If it wasn’t so bloomin’ painful, it would be fascinating!

I know the scores and length of time have changed because I keep a daily diary and score myself very quickly every night before bed and then add them up at the end of each month. I was doing really well, with the scores coming down dramatically and then consistently lowering UNTIL the recent gum flare up, which I still haven’t sussed the cause of yet. Almost under control again, but it’s so frustrating as I want to see those scores coming down. One thing I have noticed, I suppose, is that where I was scoring ONLY reactions a few months ago, I now include general stuff like colds, tiredness etc and the scores are still lowering, so that must be a good sign, musn’t it?

Well, my scores 2 years ago were off the scale at 7-8 most days and 12s were becoming pretty regular, which would have added up to a whopping minimum 200 had I had the energy to write them down. I started scoring properly this January when P bought me what we call the kitten porn diary (it has the cutest, loveliest kitten picture on the front I keep cooing at, very sad). I was determined to use it for something nice so started scoring myself every night before bed.

Here are the scores by month – you can see how much they had already dramatically dropped from around 200-odd:

January 64.5

February 56.5

March 51.5 (we had carpets fitted and I suffered more migraines as a result)

April 57.5 (gum problem flared up again, a reaction to something, still working out exactly what)

May 55 (still had gum problem and was mightily fed up 😦  )

June 29  Yes, 29!!! (gum problem pretty much gone, most days .5-1. PLEASE God or whoever is looking after me, let it stay down!)

I was SO pleased to see it that low at last. Gotta be some benefit to this restrictive diet. Well that and the fact that I bought size 12 jeans in Next – that’s Next renowned for small sizes – and they are TOO BIG. Yay! Of course, I have kept them just in case. Old IBS habits die hard.

My scores for beginning of July have started off a bit higher as I tried a new supposedly safe TGF iron supplement for you and, guess what, not safe at all. Now have a gum sore and 3 massive ulcers in my mouth. Ah well. It does look as though my gums are being the weak tissue indicator suddenly. I hope that means the migraines are waning and that would mean my blood-brain barrier is stronger. Wish me luck.

Have you started scoring yet? How are you doing?

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11 thoughts on “Truly #Gluten Free Symptom Scores Coming Down

  1. So annoying about the iron trial – but fantastic news for you on the scores.
    I have been sticking to the barrier plan diet rigidly. Had to go ‘organic only’ on everything about 4 weeks ago and saw a huge improvement again. Re tested organic nuts and seeds but still a no, no as the imflammation on my hands started to come back as did the migraines, tingling in a shoulder and a few other things severe pain in thumb and ball of my foot.. Migraine much less severe, didn’t have the punching eye from both sides feeling, and only lasted 2 days not 3 but still had to sleep after it.
    As a result of going all organic I think I may still be going through withdrawal as have quite severe mood swings and fatigue which started a few days after going all organic.. Seems to be a weekly cycle, by friday I am feeling really stressed and crotchety, saturday – energy starts to go, sunday life is a battle, want to sleep, don’t want to talk – by monday afternoon i am feeling brighter and better, by wednesday i am my normal perky laid back full of energy self – and then it goes down hill again. The cycle is less severe each week so i am hoping it will fizzle out. Have reported it to my GP – who also suspects withdrawal. Still able to watch imflammtion going down on the outside so who knows what is going on inside me! I have always had a really red nose and cheeks – thought it was due to working outside all hours, all weathers- so great to see my personal beacon fade! It is the second thing I check each morning – hands first -for colour, swellings and lumps – nose beacon second!

    • Good job you have such beacons to check, caroline! V useful. Does sound like withdrawal; the impact on your adrenals maybe which run out of steam by Friday. I wonder if some calcium pantothenate might help. Otherwise, what are you eating/doing differently on a Friday perhaps. Should become less and less. Fingers crossed, let us know.

  2. Your scores are amazing, and so encouraging…. And what is even better is that they are all as result of your clever barrier plan!!
    But what is even more amazing is how incredibly positive and productive you still managed to be a year ago when you were scoring 200 a month and obviously suffering the kind of reactions and migraines that would have driven the rest of us into a sniffling heap in bed never to drag ourselves out…. I never realised how bad you were……. Brave, tough lady!!
    Mind you, it does make me worry about what you will achieve when your scores have dropped down to zero…..
    And soooo frustrating about the iron supplement!!! Although, it could mean that even the size 10s may be slithering down your hips soon……..

    • Thanks Michelle. At that point it was mainly the fatigue and so I dramatically reduced the number of patients I saw and stopped everything else. I remember lying with my head on the desk a lot desperately trying to make thoughts come to the front of my head seemingly through treacle, and on the sofa just not being able to move without enormous effort. Not a nice memory, I was scared. Luckily, I could write any time of day I could and earn some money – and I could take meds then for pain so dosed myself up on patient days and never let it show too much, I hope – doesn’t look good if your nutritionist looks more ill than you!! Amazing what you can behind email nowadays, thank goodness, why do you think I hardly ever do skype :). I suppose my business has evolved into a virtual clinic because of the illness; you find a way to continue, don’t you?! We all do it.

      • Belated reply – sorry…… Yes, I guess we all do find away to continue – but it takes guts! Lots of ’em when you feel that crap!!!
        Anyhow, the virtual clinic is actually so much better than a real live one as you can reach do many more people!!
        Onward and upward!!!

  3. Did Caroline test positive on all the foods she’s omitting including nuts and seeds. Curious about the nuts and seed connection – am I being “thick” – is there gluten in them in some hidden form. What would be a trigger in nuts and seeds if no gluten present?

  4. Woohoo! to your scores Micki! Great news and very encouraging, well done you. I so relate to the ‘thoughts through treacle’ description as I’m experiencing a symptom episode that the moment! Brain fog, sinus, headache, inflamed joints, bloating & mucus production etc in overdrive … all very unsociable!! Damn that takeaway I had in a weak moment!! I am off to badger my doctor on Friday to run me through the genetic coeliac blood test and get my thyroid levels re-tested – wish me luck as he’s never really ‘got’ this but I am determined he provides some support – this time I’m taking a written summary of everything to help my ‘blank mind’ moments when talking to him. Still clearing the decks before I go fully barrier plan. All very encouraging though to see your blogs and the discussions. Thanks again 🙂

    • Thanks Clare, sorry to hear about the dratted takeaway reaction. It will happen one time and you will say ‘enough’and make nicer takeaways yourself; we all get there and I know your cooking skills are strong!

      Thanks for your congrats too, I am feeling pretty pleased with myself despite the ulcers in my mouth from that flippin iron. Worst thing is, I shall have to do it to myself again to make sure it was that. The sacrifice.

      Re gene test, remember the doc will only look for DQ2 and DQ8, the coeliac genes, not DQ1/3/7/9 which is the full gene test I badgered the labs to do for us. But good start with coeliac ones. If negative, doesn’t mean you don’t have non coeliac gluten sensitivity, remember that. Let us know how you get on. Write it down so you can remember (hee hee, little symptom joke :))

      • I’ve added that to my notes thanks – just need to remember to take them with me, LOL!

  5. […] of the plan who are already feeling hugely much better on the first stage elimination diet but here is the post on which she logs her own migraine scores over the last six months since she has been following her […]

  6. […] Contact ← Truly #Gluten Free Symptom Scores Coming Down […]

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