I recently visited my GP to discuss several awful reactions to food I have had over the last 3 months and the increasing amount of food I am unable to tolerate. Initially I was (I think) diagnosed as NCGS but given the episodes over the last few months and me becoming very sensitive to particular foods the doc thinks that I have probably got coeliac. We discussed testing and I said I didn't want to do this. However, she reviewed my blood tests and determined I had borderline high cholesterol and blood sugar. Both apparently could be reduced by losing weight but I was offered Metformin for metabolic syndrome and she suggested I do some research before making a decision. The doctor also confirmed that there is an overlap between coeliac and diabetes. My problem, (like others on this site), is difficulty in losing weight despite diet and exercise but it seems Metformin can help you lose weight and reduce your blood sugar level. I would prefer to lose weight without medication to control the blood pressure and sugar levels but my diet is so restricted that eating is beginning to be so perfunctory and boring. I have lost a stone since last July by eating virtually nothing but forgot to tell the doc this. As of today I started the low carb diet that Janie lost tons of weight on. Not sure how long I will last on this as sugar and carbs have to be avoided and it is in the remaining foods I can eat like carrots and fruit. I have looked at the advice given to others with similar problems and it seems the low carb diet is appropriate for impaired glucose tolerance. The doc told me that stress also contributes to glucose intolerance and I have plenty of that.
I've done a bit of research and haven't really been convinced by Metformin. I don't think the doctor was offering it to me as a short term solution - I think she thought I should go on this for quite a while and I am not sure about this. Does anybody have any experience of this medication? I would be really grateful for any comments.
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urbangirl
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I have no experience of Metformin, but I do have experience of Low Carb eating and there are various "forms". Some Paleo sites will suggest that you give up every bit of carb going, but I have continued to eat things like carrot and fruit, because the carb content is low and the fibre and nutritional content are important (but I don't eat many fruit in one day). It has helped me to lose weight and keep it off.
This site has a lot of useful information and links.
Thanks Penel. I got some good stuff from Janie too. I am interested that you keep carrot and fruit in your diet and you still have lost weight as I have been trying to eat a low carb diet which included those foods and struggled to lose weight. This is why I have omitted them from my diet now. I want to see what happens on a strict low carb diet which I started on Tuesday so I am now 4 days in and have noticed nothing! Because I am not having fruit I now don't have breakfast as I can't seem to find an alternative. I don't bother with lunch either but have a handful of almonds as I read they suppress the appetite. I try to make a really nice evening meal. It is very difficult finding recipes when you are intolerant of so many things. Big meals are easier to arrange and it is nicer to cook for more than one person.
I guess how low you need to go with your carbs will depend on individual metabolisms or health problems. If you are aiming for ketosis it is possibly a good idea to reduce carbs gradually? It doesn't suit everyone and can make you feel like rubbish. Can you discuss this with your doctor?
I have had to experiment to find the level that works for me, and I am ok with a lot of veg and some low-carb fruits. Nuts are a good filler, but I'm a bit worried that you don't seem to be eating very much (sorry, it's the granny in me). Perhaps berries would be a low carb option for breakfast, if you need it? Or save some of your evening meal for breakfast? My son makes himself bone broth for breakfast, not something I can manage!
One readable and informative scientific book on the effect that food (and stress) has on the body/hormones etc. is "Fat Chance" by Robert Lustig, who is an American obesity expert. If you haven't already, it's worth reading.
Really helpful links Penel thank you. I don't intend to aim for ketosis I just need to do something drastic to reduce weight. What I am doing has not been working - although I have lost a stone since July and my tests were done before then. The doctor told me to avoid the berries which I had been eating for breakfast presumably because of the fructose. One of the links you sent was so useful in determining the higher carbs levels in fruit and explanations. I have a real fear of diabetes be it pre-diabetes, type2 or type1. So if I am to avoid medication it is crunch time. If I lose weight and still have high glucose levels then I will probably have to take the medication. I am trying to absorb all the info about diabetes prevention, fructose, low-carb diets etc but in the process aiming high ie big weight loss! Apart from having quite a few intolerances to foods one of the biggest challenges for me is that I am quite a fussy eater which does not help. It is so disappointing for me to not be able to eat the some of the few things that I did enjoy. I have never been creative with food and see eating as a perfunctory thing. I have never eaten much so it is surprising to me that I have weight problems especially as I exercise so much. But I guess that is all part of having these problems and there is a physiological reason why I cannot shift the weight. Despite being overwhelmed with data I think I am beginning to understand some of the stuff. Thank you for your time and help.
Follow a low carb diet, and you won't put your insulin under stress, so your glucose will lower and u won't need any pills....no one said it was easy....but you will feel loads better, I promise..
Urbangirl, I think I had similar issues. I am diagnosed coeliac but had a long spell of reactive hypoglycemia. I went low carb, removed all carbs, including fruit as it made my blood sugars spike and fall. I kept veg like carrots, parsnips, peppers because I needed to still eat something 'sweet' and got round it by combining with fat and fibre, so the glycemic load of the food I ate remained low. I also ate every 3 hours, in very small amounts to stabilise my blood sugars. An example would be I'd eat a (lactose free) yoghurt with hazelnuts on top to lower the GI, 3 hours later I'd eat a handful of rocket with edamame beans. I searched out powerful flavours to keep my diet at least a little interesting.
I also REFUSED to be beaten by it and started to exercise loads, using Couch to 5K programme, at first running for 60 seconds at a time! (C25K app). Over 20 months I have lost 2 stone, done my first triathlon, and not had a blood sugar crisis for 6 months. I've managed to reintroduce sugars into my diet; fruit, meringues, sugar, coffee, pasta, and I no longer have to regulate my eating to every 3 hours. I am almost normal (apart from the coeliac, lactose intolerance and FODMAPs diet for my IBS :/ ).
I was desperate to get Metformin at the time, but my BMI was fractionally below prescribing guidelines in the UK. Looking back now, I didn't need it but I did need to alter my lifestyle. I never expected to be free of the Reactive Hypoglycemia (I'm still not completely free, but to be free of the food restriction and regulation is amazing). I still exercise frequently. I think I have another stone to lose, but I am doing this gradually and carefully with lots of exercise and normal eating.
There is light at the end of the tunnel for you too!
Sassyl - just replied to Penel so some overlap. But thank you for this - you do sound similar and at least I don't have lactose intolerance. I can't eat eggs but for some reason I have managed to eat the occasional meringue without a problem. That is so good you lost 2 stone! Well done on the triathlon - what an achievement! I swim a mile nearly every day but I am going to try walking a bit more. I have problems with a long term injury (I used to run 10 miles every other day and damaged my hip) so it is difficult to find alternatives to swimming. My body is so used to swimming that this exercise doesn't burn carbs but it is good for cardio vascular purposes and I love it!
You can see from my reply to Penel that I am trying to be creative with food and she sent some good links. I am completely overwhelmed because in the last year I have gone from being NCGS, to probably coeliac to pre-diabetic. And now it is beginning to have more of an impact on my life and my family's. I do not want medication as it will not be a 'quick fix.' And for me, similar to you, I want to be in control and also refuse to be beaten. What is Reactive Hypoglycemia? Is it related to coeliac? I will read up on this so don't worry too much about a reply. But how did you find this out and how is it different to being glucose impaired?
Your words are so encouraging and helpful. I sent my husband out with a shopping list this morning! He has now returned so I am off to cook some lunch for us with a new recipe!
That was a great reply from Sassyl. My husband was pre-diabetic until he joined me in eating low carb.
I have looked on my "go to" site, which has some suggestions as to why you don't seem to be losing weight, hopefully it may have something to help you.
Brilliant that you are not accepting defeat! I know of several people who have turned things round from RH or Pre-D, like Penel's husband too, so it can be done!
As far as I gathered from reading up about RH and Pre-D (which I was told would be my next step along the path) is that they are both results of faulty insulin switches/ uptake. With RH, the insulin switch turns on but does not switch off again. The result is that once any carb is eaten which raises the blood sugars, the insulin switches on then the 'off' fails and blood sugar drops incredibly low. With Pre-D, your body is still producing insulin, but not enough to bring your blood sugar back into normal range, so it remains high. Pre-D often follows RH in disease progression because the body's insulin stores and ability to create insulin can't keep up with its overuse. The amount of insulin your body creates, and the cells ability to take up blood sugars is linked to the amount of fat around your cells too, so the more your BMI is normal, the more normal your insulin production and glycogen uptake into cells (which is why losing the weight has helped me). With RH, bloods will be around 9 if high but can drop in 20 minutes to 3. With Pre-D blood sugars are higher but stay high for longer.
The website with the best info I found on RH (and some on Pre-D) is hypoglycemia.asn.au/
Regardless of the differences between the conditions, the diet is the same. The aim is to stabilise your blood sugars so that the peaks and troughs are evened out. Eating small low-carb, high fibre meals (a handful) every 3 hours is recommended. (There are some recipes on the website above too). For me, although this was incredibly dull and monotonous it did make me better almost immediately, because the fatigue and brain fog from the RH was unbearable. It was worth sticking with, and as I said before, I thought I would be doing it for the rest of my life, so to be almost back to normal is incredible.
You asked as well about the link between coeliac and RH/ Pre-D. When I saw my endocrinologist, he said that RH and Pre-D were common in coeliacs.
Sassyl that is so reassuring to hear from you, Janie and Penel that you can turn things around. It is my goal for 2014 to turn things around. I have been reading up on all these things on the links that you have all sent me. What a minefield this is.
Thanks for your very clear explanation on RH. I did the questionnaire and came out high. But I think some of the answers could be explained by other factors so I don't want to rush off to ask if can get tested just yet. It must have been a relief for you to be diagnosed although probably quite a frightening experience. Knowing what is happening to your body de-mystifies things and having an explanation is always so reassuring to me. Not surprised at the link of RH and coeliac. My GP also told me that diabetes is linked to coeliac. I think being relatively newly diagnosed it is hard to keep up with everything.
I had an interesting conversation with a friend today. I told her I could not swim this morning as I was ill (unfortunate reaction to the cauliflower soup I made yesterday). I told her it was coeliac related (it was easier than explaining other stuff) but she said 'have you still got that?'
I understood that the only link with CD was Type 1 Diabetes, along with a host of other autoimmune disorders through sharing the same HLA (in CD's case DQ2/8). It's why it is one of the tests performed on Coeliacs.
I was also informed at clinic that the reason we are advised to consume gluten free 'staples' is to avoid hypoglycaemic symptoms which may occur on a gluten free diet.
Jacks, the link is with Reactive Hypoglycemia, which is different to standard hypoglycemia. The first is a faulty insulin switch and is caused by eating carbs, particularly simple carbs. The latter is a response to not eating enough carbohydrates regularly, and is to do with a gradual fall in blood sugar.
Hello I am not very happy! After a bit of research and advice from members on this site and on the Thyroid site I went to the GP and requested a thyroid test. My symptoms (I have previously mentioned them) weight gain, difficulty losing weight, raised cholesterol and glucose, fibromyalgia and continuous muscle/tendon problems eg bursitis, tendonitis, rotator cuff, tennis elbow etc have suggested I may have a thyroid problem. I have been on a low carb diet since my last test in May 2013 and lost 18lbs since then - not enough considering I have cut out so much! Also I think a major contribution to this weight loss is when I have been glutened and on occasions when I am out and there is no food available so I don't eat.
When I went for a blood test today I discover I am having two tests for glucose, random glucose and also HbA1c (which is a test usually used for diabetics) random cholesterol, anaemia and thyroid, TSH. I am annoyed about this because I wanted to be tested for T3 and T4 and Vit B12 deficiency because I understand these tests would give a clue as to whether my symptoms were caused by thyroid or vitamin deficiency. Instead the concentration is on the glucose and cholesterol despite my discussion with the doctor, and I also understand the TSH is often inadequate. I will get the results next week. If TSH is normal range I am going to get a private TS3 & TS4 done. Sorry for this rant but I think they doctors are looking at the wrong tests and concentrating on impaired glucose problems rather than thyroid. I just don't feel listened to!
Hi urbangirl, this must be very frustrating especially as you asked for a thyroid test but the Dr must have a reason so when you go back for the results next week I'd ask and make the point that you were not impressed as you felt you being ignored.
Here's a really interesting blog made by Fiona about the connection with CD and thyroid disease:
Years ago I realised that I had a lump on my left knee and went to my local surgery and asked the Dr if he'd have a look at it and he said no and looked at my right knee instead!!! he then asked me if i wanted any immodium! I just stood up and walked out. Now I think it is funny but was not impressed at the time.
So these things happen to all of us and at least you have a plan B so I hope that you get it sorted without having to go private.
I am frustrated because as you point out there is a link between CD and thyroid disease (which I have symptoms of) yet the doctors seem resistant to explore this and prefer to discover how much cholesterol and glucose I have rather than see if there is a physiological reason for it to be high. My worry is if the test results for cholesterol and glucose are positive this will distract from discovering whether I have thyroid disease. And they will probably suggest I take medication Metformin as they have done before without first excluding other possibilities. I do know there is an overlap between CD and diabetes too so maybe that is behind their thinking.
What bizarre behaviour your GP had - what on earth was that about? That is really weird. Wonder if they are still in practice?
The Dr concerned was a locum who had, had 2 coeliac patients previously and they both needed immodium, why he wouldn't look at my knee is a mystery.
Now I think that having coeliac or any other auto immune disorder is far more complex than many realise. I have come to this conclusion based on my experiences so for instance I have real issues with most medications and if I have to have a course of antibiotics they do what they say on the packet but as I start to feel better I get internal bleeding that can last from days to months, my gut specialist says this should not happen!
So the problem is our vital organs all interact and if our immune system fires off at one then it makes sense that it will affect others, so my theory is that we have twitchy immune systems and need to learn to live with our bodies and their reactions rather than try and convince others.
As well as CD I have microscopic colitis osteopenia and I wonder about SLE but at the end of the day they are just labels to me. I am lucky as I have learnt to live with my bodies idiosyncrasies and feel that this is how mother nature made me.
But you need to establish if you have hyperthyroid and need to insist on the correct tests. And you need to know your cholesterol levels/blood sugar levels and try to get everything back to normal then you should start to feel well again.
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