Gluten Free Guerrillas

Sudden tiredness and weakness, ongoing fatigue. Finally an answer!

Hi all,

I asked a while ago whether anyone else had sudden tiredness and a few responded likewise, so this update is for you and anyone else affected.

Every now and then I have to put my head down and go to sleep for no apparent reason, completely knocks me out. It's not related to any regular food and initially I thought I had a thyroid problem.

I've been on at my doc for ages, who finally referred me to an endocrinologist. When I saw the endo he suggested a glucose tolerance test 'because he sees lots of coeliacs who are affected by reactive hypoglycemia'.

I had the glucose test yesterday, and 40 mins after drinking the (sickly) glucose drink I fell asleep, curled in a ball in the waiting room. The nurses were shocked by the effect it had on me and insisted on monitoring me for the rest of the 4 hour blood test.

If you're querying sudden tiredness or ongoing fatigue please consider reactive hypoglycemia as a cause.

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27 replies

    Irene
    Irene Administrator

    Thanks very much. This is an excellent example of why we set up this page. We'll have a read up this and post. One of the team has the fatigue you describe. The GP organised a glucose fasting blood test which didn't show anything. Perhaps the other test would show a different outcome!

    TheGob
    TheGob

    Many thanks Sassyl, I'm sure this will help many who suffer your sort of symptoms. Hope it works out well for you.

    beckyf
    beckyf

    Wow - that sounds like exactly what my daughter is struggling with - and this particular test has not been done. Thanks so much for sharing Sassyl - hope that you will recover soon.

    purplehaze
    purplehaze

    This puts another perspective on my problems too! 2 years gluten free, my extreme fatigue and exhaustion mostly disappeared after stopping dairy, but I've also has bloating, wind etc issues which I was finally sent for a breathe test for. I experienced the same problems as Sassyl but within 5 minutes of drinking the glucose drink, I also shook and sweated but felt I would pass out in the waiting room if I got up to get assistance. I was found positive for having a bacterial infection of the small intestine, but my reaction to the glucose was put down to "dumping" as I've had a gastric bypass. This gives me another question to put forward to the gastro-enterologist when I finally get to see him in April - Many thanks.

    Irene
    Irene Administrator

    Here's a link giving some explanation of the condition

    www.hypoglycemia.org.uk/rea...

    Unfortunately my heart did sink a little went I read that many UK docs do not recognise this as a 'condition'. I'd like to think Sassyl, that your endocrinologist represents the norm, but I sat recently in front of my endocrinologist, describing my symptoms, and he has suggested a sleep apnoea test, even though I said that I was waking up refreshed.

    KarenBC
    KarenBC

    I was also diagnosed with reactive hypoglycemia by a wonderful endocrinologist. She'd already had a patient who she thought was dying and had her in the hospital immediately only to work out after that it was reactive hypoglycemia and is now fine.
    I was then diagnosed with chronic Candida Albicans and since I've dealt with that (or at least have it a little more under control), i can actually manage sugar occassionally without the effects.

    Liana
    Liana

    I too had a similar reaction to glucose and was finally diagnosed as hypoglycemic. I had to take the test 3 times because half way through I would pass out or vomit. I got the sweats, shakes, and dizziness. At least now when I get cold, dizzy and sleepy I know to eat a small high carb meal. I often carry bits of cheese and fruit in my purse if I know I'm going to be out at the hospital or doctors office for a long time waiting to be seen. I always have a small bag of dried fruit and walnuts and pecans in my purse for emergencies. When I travel by train or bus, I always take my own in case there isn't anything to eat that's gluten free. Small meals frequently have worked for me.

    KarenHelsby
    KarenHelsby

    OMG!!!! This is me im at the Dr's tmrw i feel dreadful.....Havind had coeliacs for fifteen years i now cant take milk into my diet ...five ulcers in my colon, tired all the time, dizzy and sweats...i have just had to sell my business because i cant function any more :(

    jackieO
    jackieO

    I am an endocrine specialist nurse and have seen young people (none of whom have coeliac) in who we have found rective hypoglycaemia. Most have some family history of diabetes (usually type 2) and this phenomenon is a reflection of rampant overproduction of insulin in response to a glucose load. It is thought by some to be an indicator of ruture likelihood of type 2 diabetes risk. Avoiding foods that give a sudden rush of sugar which will lead to a sudden rush of insulin can reduce symptoms.

    FionaGFG
    FionaGFG Administrator

    Thanks JackieO. Can you give some examples of which foods to avoid that give a sudden rush of insulin - as I know that many coeliacs aren't always as cluded up on this as much as diabetics are.

    Also have you noticed it occurring in people who have no history of diabetes type 2?

    KarenHelsby
    KarenHelsby

    Jackie how do you go about getting tested, i really do feel so poorly...my joints hurt..my hips and knee joints....im tired all the time, i cant function properly, i have to do a bit stop a bit and then start again.....i thought i was having accidents with my coeliacs as food was running through me again....but i wasnt, when they took me into hospital they found part of my colon damaged and five ulcers....the minute i took dairy and soya out of my diet it stopped....but im still tired all the time and like sassyl i fall asleep after i have eaten....i dont take vast quanity of sugars into my diet because i have always worried about diabetes, but i do eat quite a lot of carbs as my body struggles to process meat also....any suggestions from all would be greatly appreciated....

    KarenBC
    KarenBC

    Hi, I can't do gluten, dairy, soya, corn, nightshades and sugars. For the hypoglycemia, I basically follow a diabetic diet - low GL - lentils, chickpeas, sweet potatoes, brown rice, quinoa as carbs. I also carry almonds and hazelnuts on me, just in case. Quite a lot of eggs and fish.
    I avoid white bread (GF, obviously), white rice, white potatoes and sugar. I have to be careful with fruit but find that apples, pears, berries and bananas work. Dried fruit has high sugar ratio so should be eaten in limited amounts.
    I do use Stevia occassionally, although there is a big debate about that, honey in small quantities. When I really fancy something sweet, I make myself some cakes or biscuits using ground almonds, veg oil, eggs and honey or Stevia and I use lots of flavouring to compensate - lemon, vanilla unsweetened chocolate powder, ginger...
    Hope that helps

    deltauk
    deltauk

    Hi Karen, I am exactly like you, although never been dxd with hypoglycaemia or coeliac, even though had all these problems in childhood, I had to wait until I was an adult and go through it all myself.
    I'm no longer fatigued, or shaky. I too leave alone white stuff, rice bread potatoes etc, also tomatoes, they say, come from the white potato and nightshade family??
    However I used to come home from work and sleep on the settee the minute i got in. (caused many a row with my ex H).

    But I do eat soya yoghurt's as never thought of them being a problem. (More recently though I have needed to rush to the loo) :/
    Never had Stevia, what is that like and what do you use it on?

    Thanks for your post, it was so enlightening for me to read.

    Deltauk

    KarenBC
    KarenBC

    Stevia is a plant. The leaves are dehydrated and ground and it's sweet like sugar. It has no calories and diabetics can have it. Found on sugar section.
    Its very challenging to live normally with so many foods taken out but at the same time, you have more energy to enjoy it
    good luck

    deltauk
    deltauk

    thank you for your quick reply Karen, so do you put it in cooking ? baking? etc

    KarenBC
    KarenBC

    Everything. In replacement for sugar but in much smaller quantities as its very powerful. I think one of the brands is called Purevia.

    deltauk
    deltauk

    Thank you very much for your help

    jackieO
    jackieO

    Unfortunatley testing for reactive hypoglycaemia is not terribly straightforward. The young people I amn aware of us having tested had clear stories that suggested low blood sugar levels at set times after eating. Standard Oral Glucose Tolerance tests may not last long enough to establish hypoglycaemia and it may not be a sudden sugar rush that causes the problem. In at least one of these kids we used a continuous blood glucose monitor for 3 days to record patterns of blood glucose levels correlated with a detailed food diary. Reactive hypoglycaemia is more of a symptom than a disease and teasing out what may be causing it can be very problematic. I think we have only established an actual cause (a rare inherited type of diabetes) in one of the young people. Providing evidence of clear symptoms and timings related to a food diary may persuade your GP to press for further investigation. Even better would be definite evidence of low blood sugar levels at the time of an episode which would need records of blood sugar monitoring. We only investigated further and tried to trigger these events when we had documented evidence of true low blood sugar levels on a glucose meter.
    The information in the link provided above about small regular meals and using foods with a low glycaemic index is the key to management but can be difficult to fit into a busy lifestyle as my brother in law has discovered.

    jackieO
    jackieO

    KarenHelsby, your symptoms are so general they may not all be related. The joint pains in particular may be related to Vitamin D Deficiency. I used to have awful aches in my arms and legs and boney pain that soetimes was also in joints. I had a dexa scan as part of a review of my arthritis a couple of years ago and was found to be osteopenic (precursor to osteoporosis). I was started on calcium and vitamin D supplement s and felt massively better within about a month. I now only really have joint pain when I have overdone it with walking, lifting etc and feel more energetic generally. I used to have to stop frequently when walking up any level of slope and could not manage a flight of stairs at home all in one go but now find them no problem at all (the slopes are still a bit of a problem but I think that is cos I am not very fit).

    KarenHelsby
    KarenHelsby

    I just feel so tired and poorly all the time now JackieO ...i think i need a good MOT which im going to set about getting, because this is no quality of life anymore :)

    napoleangluten
    napoleangluten

    So if the test comes back positive for reactive hypoglaecemia.....what then?

    sassyl
    sassyl

    You'll love this...

    Dietary change!

    No (limit) simple carbs or sugar (white, brown rice, sugars, white bread, new potatoes...)
    No caffeine
    No alcohol

    Eat six to eight small meals a day. Always eat carbs with protein and fat to lower glucose load. Advice is to eat whole grains (but I'm struggling with that). I'm still dropping blood glucose rapidly after every meal, no matter how small :(

    RH is a cause of something else though, so I'm hoping for more investigations to pinpoint what else is going on in there!

    napoleangluten
    napoleangluten

    The answer is to stay off gluten and simple sugars and eat 8 small meals per day!? what is a 'small' meal anyway? It sounds like they are trying to treat your level of tiredness not the cause. Is that what they said?

    What does a typical days food intake consist of for you?

    sassyl
    sassyl

    When I eat I release too much insulin, which sends my blood sugars too low. So I need to level my amount of carbs and avoid anything that will cause a spike in the amount of insulin, such as simple carbs and sugars.

    Six smaller meals should even this out.

    http://www.reactivehypoglycemia.net/

    napoleangluten
    napoleangluten

    Sometimes eating more carbs helps the tiredness i have found, when i eat i feel tired then i drink a can of fanta and i am reasonably functional. Maybe the insulin can only take so much carbs, but this is probably a bad way to offset the symptom anyway as fanta contains wheat derivvatives and sugar itself is pretty bad for you according to many pro's

    SillyYak
    SillyYak

    I was getting a lot of tiredness and am now being treated for suspected endometriosis that was causing pelvic pain and bleeding from the rectum. So I think it's always worth getting ongoing problems investigated.

    brybaby
    brybaby

    Hi sassyl, as a fellow suffer all I can say is THANKYOU!! For your post. I too am a coeliac and was diagnosed 8 years ago - which was a big relief and a gf diet brought immediate results. But the last 3 years have been a battle again, I have try numerous variations on the gf diet, seen all manor of medical and nutrional practioners and heaven only knows how many blood tests - all without any conclusions. I have taken your diagnosis on board and have had 2 whole days not being tired!
    Thanks again, words can't really describe the incredible relief.

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