Weight

[Jill121]

I was told that people who have coeliac disease will lose weight, but i have put it on, has anyone else done this, I also get very tierd every day i am fed up with going to dr's and hospital app's yet nothing can explain the tiredness, the pains in hips and legs, the weakness in my hands, my balance is off, all i want is to get better .

[urbangirl]

How I sympathise with you Jill121. Although not diagnosed with coeliac (I mentioned this on the previous post) I am certainly gluten intolerant and get very ill if I eat the stuff. I eat a low carb diet, exercise every day - I swim a mile nearly every day, eat very little and no sweets, chocolates etc but I am overweight and the weight does not shift. I have struggled to understand why this is - the doctors are not interested and because my bloods are okay think I am really healthy; my blood pressure is very low. What I eat is what most people would call a diet! The only explanation that explains this a little to me is the stress factor. Apparently stress can stop you losing weight and so can lack of sleep. Although stress is difficult to quantify it is relative in how we deal with it. This may have nothing to do with coeliac of course.

With regard to the pain in your hips and legs, weakness and balance - that doesn't sound right. Have you had advice on your diet? Can you ask your GP to refer you to a dietician? Maybe you ought to see a different doctor in your GP practice to ask why you are still having these problems. Have you had blood tests to see if you are deficient in anything? I hope you can get some better medical advice because this is miserable for you. Other people on this site will probably be able to give better advice and I am sure they will soon.

[Karen77 in reply to urbangirl]

I definitely struggle to lose weight unless I'm able to get at least 8 hours of sleep daily. When I get my 8 hours, the weight seems to disappear. Also, I make poor food choices when tired - like reaching mechanically for sugar. When I get my sleep, I follow a paleo AIP diet (I have rheumatoid arthritis and sjogren's syndrome).

[tassie]

If you a coeliac you can also be deficient in iron and folate so its worth having those checked. You might also have other autoimmune issues going on so persist with the doctors and ask for your thyroid levels to be checked as a starting point.

I am gluten intolerant and was overweight. I had stopped eating gluten before I was tested for coeliac so of course came up negative so will never know for sure. I lost weight when I went gluten free so I believe it is possible to put on weight with it.

[Venetia]

it used to be the belief that losing weight was definitive for coeliac disease but some research has found that some coeliacs are overweight, Pains in hips and legs may mean osteoporosis, and balance being off can indicate neurological symptoms, If you have been diagnosed , persist with a gluten free diet and as you improve these symptoms should go, at least they did with me, Read as much as you can about the disease, there is a lot of information out there.

[Dawnlp]

I gained two and a half stone leading up to my diagnoses in June and my main symptom was chronic fatigue with heavy feelings in my arms and legs. I had pain in my hip and knee which I put down to getting older and heavier. I was also found to be severely deficient in vitamin D. Since supplementing ( with a spray as obviously absorption was an issue) the fatigue has pretty much gone(about 90% back to normal now) and the knee and hip pain totally gone. Unfortunately the extra weight is still there. Please ask your Dr to check your vitamin levels as being low can cause most of the issues you are experiencing.

[chaimee]

My daughter was the same deficient in vitamin D , she gets so very tired,she is a coliac, and has regular injections,so get tested. I have never herd of a spray, please enlighten,seems so much easier.

[Dawnlp in reply to chaimee]

I use Better You Dlux 3000 spray from Amazon got me from 15 to 142 nmol in 4 months. You spray it under your tongue.

[sallydogsmum]

Hi,

Urbangirl has hit the nail on the head! In fact, it could be me writing it!! I am the same, I eat really well, obviously no wheaty carbs, but also no alcohol, no lactose, no processed foods, and no ready-made free from gluten things as they have too much gluten for me. I should be thin!! But, in reality only 25% of coeliacs are underweight ( I did read it somewhere, I didn't make it up), the rest are 'normal' or over (like me). I know medication hinders weight loss, and certainly stress and sleeping badly can contribute to weight gain too, do any of these apply to you?

The other things you mention are tied up within the spectrum of CD/NCGS. Painful joints, stiffness, exhaustion, anger, insomnia, mood swings, brain fog, infertility, liver abnormalities, sinus trouble and depression can all can be associated with it. It's not all about bowels, though lots of the medical profession get tied up with it and miss other symptoms. The balance issue is an odd thing, but it is a recognised feature with CD (found in 6%). I had (have) the same, but once I'd settled into a gluten free (excluded all processed, ready made foods and alcohol) it improved - it's not gone, but it's improved. Prior to that I'd spent 2 years falling over, luckily the padding around my hips stopped any major damage!!

You don't mention what you eat, and if you're following the advice from Coeliac UK you might be eating the wrong things. Some people can't tolerate the amount of gluten they say is okay; I know I can't. (They're not wrong, they're just applying general rules to ALL of the coeliac population and missing the really sensitive people. It may be different on their site now). I would ask you, therefore: do you need to redress your diet? do you need to remove all processed foods? do you need to look into Paleo/FODMOP? do you need to remove lactose? this is a well known problem with CD, and it often produces very similar symptoms.

Make sure you've had the appropriate blood tests, that you're not anaemic, not deficient in anything, that your thyroid is okay (another regular associated disease), you don't have arthritis in your hips. Try to get some better sleep (easier said then done), try gentle exercise and treat yourself to something to help with stress; a deep tissue massage , a good film, the company of friends, herbal tea if it helps.

Treating this disease is not as simple as it seems on paper. It's trial and error to find out what works for you.

Good luck

sdm

[sdcakt]

I too am on celiac that is overweight, dietitian said a small amount of us are ! Have you tried cutting lactose from your diet as that to is a problem for a lot of us. And could be the cause of your problems

[Tiggykanga]

My sympathies to everyone still "not right" after doing a the correct things .

2 years after diagnosis I too am still overweight (although I haven't put any on in that time) but nothing I do is helping to shift it, my stomach is so enormously bloated I look pregnant (at 63!)

My cholesterol is rising, I have had numerous blood tests, on Calcichew D3 (Vit D & Calcium), on and off iron as necessary, an endoscopy which confirmed Coeliac's then a colonoscopy a year after which showed my GF diet is good but showed I have IBS too and the consultant said he does not "treat" it but prescribed pills if I got really uncomfortable but I manage without as I do not often get real pain but just very uncomfortable.

I am a vegetarian, I eat salmon fillet and tuna occasionally but no other fish and definitely no meat, I have cut back on my bread consumption since diagnosis (I always loved all the artisan bread around) - the most is a couple of slices of toast but not every day. My diet is mostly salads and vegetable concoctions so I should be slim!!!!!!!!!!!!!!!!!! I know I could do more exercise to help but I have had an intermittent lower back problem since I was 24 but when I reached my mid 50's it got much worse, so apart from swimming there is not a lot I can do that does not incapacitate me for the following day - to give you an idea even wandering around a shopping centre for more than 2hrs starts to be very uncomfortable.

I am still tired, sometimes very miserable and completely fed up - I do not know what to do next or where I should be going for further help.

[Penel in reply to Tiggykanga]

Perhaps have a look at the Specific Carbohydrate diet or possibly at FODMAPS.

Cholesterol goes up naturally at the menopause, so perhaps this is not something to worry about unless it's very high.

[Tiggykanga in reply to Penel]

Thank you Penel

In the last week or two I have been exploring a FODMAP diet but not being a meat eater and almost no fish, I worry about the protein aspect of it) but I am asking to see a dietician who specialises in that area. I am hoping there will be someone who does since the one the one I saw when diagnosed with CD 2 years ago knew less than I did!

[Penel in reply to Tiggykanga]

I hope you can find a good dietician to help you sort this out. If you are not eating much fish, and no meat, there is a chance that your B12 levels may be low, perhaps something to check.

[dancer58 in reply to Tiggykanga]

Hi TK. Your message struck a note; I saw a dietitian eight months ago because I too am a veggie (not a pescatarian), lactose, soya and NCGS (all of them high sensitivity) and was seriously concerned about my protein intake. She put me on a FODMAPS diet which would have been frankly suicidal if Id followed it. I asked to see another dietician, who seemed more helpful and asked me to complete a weeks food sheet of everything I ate which I did and dutifully handed back. Ive not heard a thing since. All I needed was a protein supplement of some sort; I used to use Scandishakes but they are lactose bombs - the consequences of which are not mentionable. I ordered some hemp based protein LF GF cr*p off the internet but I have to tell you it was like eating dried sewage..!!!! So I'm back to eggs again. Good job I'm not vegan...

I thought dietitians were supposed to assist with problem cases; they seem to just bury their heads if there isnt a printed sheet available to hand you.

I give up. I dont have a weight problem. Other than that I am just 8stone and dropping. I feel for you guys who have the opposite issue. Frankly Im almost too scared to eat anything..!!!

[Tiggykanga in reply to dancer58]

Thanks for the reply Just saw the Dr this morning and she ordered more blood tests to make sure nothing has altered since the last lot. Asked for an appt for a dietician (not getting too excited about that!).

I so wish I was back to a reasonable weight. I would not mind so much if it were distributed evenly but to have most of it on ones belly is depressing! Hubby tells me there are loads people we see around who are much larger than me and not to worry - but I do!

I looked at the FODMAP info on the internet and I agree with you, not at all suitable for vegetarians

[Mabes in reply to Tiggykanga]

Go on Thyroid UK for advice. Celiac and Thyroid problems can go hand in hand. A rising or high cholesterol level can be a sign of developing hypothyroidism. The NHS are poor at diagnosing it until it is very overt so it is definitely worth looking into and investigating yourself.

[Tiggykanga in reply to Mabes]

Thanks Mabes

As a result of various blood tests throughout the last two years my thyroid is already on watch! I will go back to my GP for further tests armed with some information.

[Marz in reply to Tiggykanga]

As you are vegetarian - I wondered what your B12 levels are ?

b12deficiency.info/signs-an...

Am afraid it is often missed my GP's....

[freelancer]

I'm another who is not a diagnosed coeliac but gained (and lost) weight. I've got pernicious anaemia but only started to feel better when I gave up gluten: like you I was always tired (make sure they check your B12 as that can make a huge difference – I was also low in D like other people here).

In my mid-thirties I suddenly put on a lot of weight in a short time – with sudden big cravings for sugar and crisps – and I'm sure that was the sign of it all starting. When I went gluten free I worked out that my weight gain seemed to be linked to gluten intake: it slowly came off. I lost 30lb slowly over nearly three years without remotely trying. It's now stabilised – I'm still a bit overweight but I'm a keen cook (though no longer want the sugar) and don't exercise enough.

I distrust those people who say weight loss is all about discipline – it can be but I think a lot of the time your body's just out of whack in some straight chemical way and causing cravings. Now when I get glutened I get a sudden desire for carbohydrate and I think that was what was happening all along – just every day. But it does take a while for everything to get back into balance.

[Inna]

Hi, the pain might indicate inflamatory process. Omega 3 reduce inflammation. Also excluding other food intolerances might be very helpful. High cortisol levels will also prevent you from loosing weight, high blood sugar (not diabetes) after meals (in 2 hours) will do the same. Thyroid is deffinitely smth else to look into.

[Karen77]

My dad has coeliac, continues to eat gluten-containing foods, and has a large hollow belly, like Santa Claus.

You can also gain weight if eating non-gluten baked goods and processed foods. I recommend focusing your diet on veggies, meat and fruits and using the gluten-free aisle of the grocery store as a source of rarely consumed special treats!

[LeilaBrickell]

Hi Jill, I hope you are well.Take some vitamin, calcium and iron supplements, at least for the first six months to replace any deficiencies and returning to normal. I wish you well and I hope you recover soon. All the best!

[Elder]

I have suffered for years with weight problems, was diagnosed with colitis , then diabetise . Then kept getting racing heart and funny turns, in and out coronary care. Not my heart. Saw doc at Sheffield was heart, treated pace and def. referred to gastro who referred to glutten specialist, end result glutten sensitivity BUT as I was having balance problems suggested Glutten Ataxia. Read about it on line, specialist who argues glutten affects the cerebrum of the brain thus affect balance and I would argue could be worse than stomach problems, and they are horrendous enough.

[Leothe14th]

Hi, I'd lost weight before diagnosis and was down to 8 stone, and now six years on am back up to my normal weight of 11stone which for my height and body mass is just right. Dr said it is now because my body is actually back to properly processing everything I eat!!