can I ask all of you who have gluten intolerance if any of you have a HUGE bloated stomach? every thing I eat makes me look 8 months

[denvajade]

pregnant and I have terrible indigestion, reflux and my stomach,bowel gurgles after eating. cheers

[sallydogsmum]

Hi!

Yes, I too have the joy of bloating! It looks and feels like I'm about to pop, and it seems to fill up my entire being........it's a really weird feeling. Along with it comes nausea, and the most incredibly foul smelling wind and eventually - well you can guess the rest. Horrible *shudder*.

[denvajade in reply to sallydogsmum]

hi there yes I know what you mean! are you on methotrexate and or any other drugs? I am on domiperidom a tablet that pushes food thru stomach quickly but it does not help, no matter what I eat or drink it bloats me, are you the same? have you mentioned to the doctor? I am at my wits end with reflux and bloating. thank you for your reply.trish

[Regalbirdy]

Hi Denvajade,

I used to - prior to going totally gluten-free. How long have you been gluten intolerant and on a GF diet? (I've read your RA forum postings). Are you sure you are now 100% GF? Hidden sources of gluten can easily trip up the unwary and vigilance is required to prevent cross contamination causing problems.

It's also possible to have a second or even third food intolerance. A dairy intolerance is one of the more common, but I know of someone who has a fructose issue - it varies from person to person.

Often a food diary can prove useful because it helps your memory can link symptoms to the possible causes.

Hope you feel better soon.

[denvajade in reply to Regalbirdy]

Hi Regalbirdy thank you for your reply, you probably have read I have had a terrible time for the last year,looked 9months preg with twins, now look 8months with one baby, but I cant seem to tolerate any food, I cant digest salad veges, I eat sweet potato and pumpkin and avocado, no other veges, I cant eat any meat,gf bread, so my diet mainly consists of egg, yoghurt gf cereal(with some difficulty) and fish, I am beside myself and even went to A&E the other night because of the pain and swelling in my stomach. They say they don't know what to do, my doctor has applied to gastro at hospital(twice) for me to be seen again (not in A&E) and they have refused due to fund shortage and say he has to mange me!!! But he too is at his wits end. At first I was so ill and looked like I was dying they thought I had liver cancer from 7 years of methotrexate, that was neg so I spent 4months having every imaginable cancer test and they now say I have the indicators of bone cancer ie myeloma, but not full blown, so get tested every 3 months to make sure it has not blown out, its all a nightmare and if I could I would just like to go to sleep, sounds dramatic I know but I am over it. thanks again for your reply it does help to have your opinion. to answer your question do I have any gluten probably like sneaking a teaspoon of my husbands gravy.

[urbangirl]

Denvajade - I am horrified that your gastro has refused to see you because of funds. I don't know where you live and what sort of hospital refused to see you but can you ask your GP to refer you to the nearest teaching hospital. However, I think you should get on to your MP as soon as possible and write to the Chief Executive of the hospital that refused you and the Chief Executive of the local Clinical Commissioning Group. This is unacceptable.

[denvajade in reply to urbangirl]

thank you for your reply, I live in NZ, I have asked to go to a nearby city but been told this is not possible, as I said I went to A&E the other night in desperation and told them I am in a bad way ie depressed and just cant cope, its terrible as I have had my mother in law come to live with us as she recently had 6 weeks in hospital with crohns and had to have 12inches of her bowel removed at the age of 85, I don't begrudge her that treatment but I am 24 years younger and cant get any help, the A&E suggested I change doctors, but I don't see how that can help if the hospital keep turning me down. I am lying in bed feeling so ill so appreciate your reply as I feel my husband has had a year of me "going on" your suggestion of MP sounds a grt one thanks.

[urbangirl]

Denvajade your situation sounds so dreadful. I don't know anything about NZ healthcare but in my opinion you have a right to decent healthcare. If you can get someone in some position of authority to take up your cause then maybe they will know how to press the right buttons. Would it be worth writing to the top manager in the hospital that refused you? Good luck and I will be thinking of you.

[denvajade in reply to urbangirl]

thank you for your reply, I wont leave it as it is, I will follow thru on suggestions

[Tiggykanga]

Hi Denvajade, what a dreadful situation you are in. You must must must keep fighting to get what you deserve, decent healthcare. Good luck

Briefly in answer to your question: a year on still bloated, like you anything I eat makes it worse. Still tired so nagging my Doctor again - just had more bloods done and waiting for results. Also looking for another coeliac specialist near to my area - the one for my area is a part timer and impossible to get appts in a reasonable time

[denvajade]

hi thankyou for replying, when you say bloated, how big please?

[Penel]

Hi Denvajade

On a recent discussion the book "Good Gut Healing" by Kathryn Marsden was recommended. Perhaps have a look at it, as it seems to have some very good advice.

Good luck with sorting out your problem.

[denvajade in reply to Penel]

hi there thank you, will go to library in the morning.

[sallydogsmum]

Hi again

Sorry about the delay in replying, but the boiler's broken down.........again!!!!..........aaargggggggghhhhhh!

I'm not on methotrexate now - I can't tolerate it. I have RA as my initial autoimmune problem, and take injections of Enbrel to treat it and the usual mix of paracetamol, ibuprofen, vit D3 and steroids when needed. I haven't mentioned anything to the GP about bloating, as I'm not sure what they'll say apart from avoid gluten!! I'm fairly fastidious when it comes to GF diet, as I react quickly and explosively, but still get caught out. I don't 'do' the UK coeliac society diet as they allow too many products that cause issues for me, and I'm still learning what makes me ill: this week I've realized that corn products now stir up the beast - not that I ate much, the occasional bowl of GF pasta, but that's now off the menu.

If you continue to get the problems you mention when you've taken all gluten out of your diet ( and that may including taking out all of the ready made GF stuff and wine if you haven't), it's time to re-visit the GP/consultant and review the medication you're on.

[denvajade in reply to sallydogsmum]

thanks again,i know what you say about gf pasta, not good for me either, had gf cereal gf yogurt and milk and was sick with in minutes, so going to look at lactose free milk and see how I go. cheers

[KirbieCat]

Hi Denvajade

Is there any way you can go private to see a gastro? I've also been told that I don't qualify to see a gastro in the NZ public system. Apparently what you can do though is have your first appointment privately and then ask to be seen at the hospital thereafter. An option maybe??

Also, have you checked that the Methotrexate itself is GF? Lots of drugs here in NZ are also full of gluten.

[denvajade in reply to KirbieCat]

Hi there KirbieCat thankyou for that, I think I will have to go private, already spent several thousand on tests and as we are on the age pension I was trying to do it public, sound advise cheers

[Regalbirdy]

Hi Denvajade.

You sound like you're having a right time of it.

Do be aware that sometimes sneaking a spoonful of your husband's gravy is really not helping you! If you know you are gluten sensitive then you must stay on the wagon - permanently! In the case of gluten you cannot be a bit intolerant. You either are or are not intolerant to it (in the same way you cannot be a bit pregnant..!). This could be one of the big underlying causes of your problem. When I was diagnosed with coeliac disease I even had to change my toaster because of the risk of old crumbs getting on my gluten-free bread.

Also be aware that if you are intolerance to gluten, you could be intolerant to dairy products as well. For many people a dairy intolerance is temporary and improves as their gut improves on a gluten FREE (totally!) diet.

[denvajade in reply to Regalbirdy]

thanks Regalbirdy, you are right, will be diligent, now going on lactose free milk.

[beau_alicia in reply to Regalbirdy]

The toaster thing is a very good point! I wouldn't have thought of that, thank you.

[jnbina]

Hi there

I've also remained in pain although keeping to a strict homemade g/f diet. I was eventually diagnosed with IBS and now stick to a FODMAP diet and pay special attention to having soluble fibre and avoiding insoluble fibre. You can get all this info by looking it up on the internet. Give it a week and see if you improve.

(12 yrs coeliac, 2 yrs lactose intolerance and now 8 months IBS)

[denvajade in reply to jnbina]

Thank you jnbina, will look up soluble fibre, do you have a HUGE stomach, are you on methotrexate?

[Regalbirdy]

Hi Denvajade.

You do sound like you're having a right time of it.

Sometimes sneaking a spoonful of your husband's gravy is a very bad idea if it's not gluten-free! If you know you are gluten intolerant then you MUST avoid even a sniff of gluten containing foods (and drugs) if you wish to feel better. When I was diagnosed with coeliac disease, I was told to change my toaster in case old breadcrumbs got on the gluten free bread. This is how vigilant you must be! Unlike many other intolerances you cannot be a bit intolerant to gluten - you either are or you aren't (in the same way you can't be a bit pregnant!).

Have you considered that you may also have a milk intolerance? However this IS something that maybe temporary and is quite common amongst gluten sensitives who have only recently given up eating gluten.

[Lynilou]

Bless you, I can relate. I went to my dr with a stomach that looked 6 months pregnant, so bloated, and such bad reflux I was sent to a and e for heart monitoring! Fortunately my dr took me seriously and sent me to hospital, in uk, where I had a ct scan and gastroscopy. My symptoms appear to be related to the start of the menopause and fibroids! My coeliac may have also been compromised, possibly by gluten free oats which I had been trying- never again!- but I had been followed the fodmap diet as I am so prone to IBS and reflux and it did the whole 'heal and seal' thing so well my consultant said the coeliac was under control! Now I am coming off the meds though guess what? My stomach is bloated again, so it's back on the domperidone and omeprazole again but also back on the FODMAPs, just a slight variation of food and it all starts again for me. My advice? Keep going back to your dr and stay on a totally gluten free diet, try the fodmap diet. Good luck x

[denvajade in reply to Lynilou]

Thankyou Lynilou sounds terrible to say but it feels good not to be alone with these symptoms, I have had a hysterectomy so it is not anything to do with that. It is food for me and it sounds as though that's it with you too. Are you on any meds for RA? I feel these meds have damaged my stomach. Thank you for all your advice I will act on it. ps are you lactose intolerant? Look forward to hearing from you again. trish

[denvajade]

Hi Detoxhomeopathic thank you for your info sounds great will get onto it. cheers

[poing]

Hi denvajade,

My main symptom of being glutened is constipation. After about three days of being exposed, my belly starts to swell as food goes in the top but not a lot comes out the other end, if you know what I mean! It's worse towards the evening because there's more food in my system, and the belly goes down overnight as food is absorbed.

I reckon that the extreme bloating points to constipation... you may not be aware of it as this, but put it this way, if the food was moving through as it should, then you wouldn't have the giant belly. Constipation isn't always as obvious as you might think, especially if you still poop a bit most days.

I''m not like this all the time, it seems to come and go. I have learned that I have to be strictly gluten free. I am pretty sure that I also have a second food intolerance, to yeast, which causes a similar reaction.

I've been using quite a lot of gentle remedies aimed at treating constipation and improving digestion: magnesium citrate, enteric-coated peppermint oil between meals, making sure that I leave a proper gap between meals because that improves digestion (no snacking), soluble fibre (from foods whenever possible although there are plenty of over the counter alternatives), kiwi and pineapple enzymes (from kiwis and pineapples!), bitter herbal teas such as nettle (they tend to speed you up), and a herbal preparation called triphala (can't be sure if that worked though). Also added gelatin to my diet in the form of stock and jellies and am currently on probiotics.

There are a bunch of things you can try to see what works for you. I've been trying various things for about three years now, and I think I'm about 90% improved.

Hope this helps,

poing

P.S. the FODMAP diet can be tricky for someone with constipation... removing all the FODMAP sources of soluble fibre can actually worsen constipation and transit time. If you do the diet, you'll need to be very careful to increase soluble fibre from other sources.

[denvajade]

Thankyou poing for your reply, I am like you wake up flat and get bigger as the day goes, while I do have a constipation/then lose problem, I think a lot of the huge stomach is gas, it can happen straight after my first meal, it can be HUGE then a couple of hours later it will go down abit before I eat again. you are right I'm sure about the snacking, I will stop doing that, the pain in my stomach makes me feel like I am hungry. I have not looked at the FODMAP diet yet but hear what you saying. thankyou again

[Lynilou]

Hi again,

I had a bloated tummy last night, I had to stay sitting up for an hour before I felt comfortable enough to lay down to sleep. All I could put it down to was too much veg in the home made chicken broth and not enough meds to pass it through quickly and stop the reflux! Sounds wonderful I know, I am low in vit d but apart from that I like to think my coeliac disease is under control.. Until the next episode, and there will be one!

Have been on so many meds and now trying to stay off them, although was tempted to go to medicine cupboard last night! I'm off to yoga class soon, that's a sure way to help relax and ensure a great nights sleep

[dancer58]

Horrible bloating!! I dont have it quite so bad- but I certainly appreciate the tightness and pain. I sorted mine by totally eliminating ALL gluten and then when it came gurgling back again with terrible and offensive wind, etc etc (!) I realised it could only be lactose. What you've described sounds exactly like the symptoms I had from digesting lactose.

I monitor my intake now and can tolerate a little (with the lactase meds) but if I forget or overdo it- I bloat like a puffer fish. Im always reminded of those sheep who've eaten too much clover and want to use one of those hollow tubes vets have to relieve the pressure- I'm that desperate...but I'm not sure that'd be a particularly grand idea.

Good luck with your diet- and remember NO CHEATING. You'll regret it.

[denvajade]

Thankyou cramps1, I have just removed lactose from my diet 4 days ago and there is an improvement but still huge, I went for a second opinion yesterday and the doctor was horrified, and I am have the size I was 9months ago.she wants all my test results scans etc as I have been on chemo weekly for 7 years and she thinks this is playing a part. will keep you informed how I go and appreciate your thoughts. cheers

[FionaGFG Administrator]

Hi Denvajade you have many things going on & members here have given you good advice. Here's some additional pointers that may help you:

- do ask Dr for lactose & fructose intolerance breath tests (intolerances to these can mimic the symptoms & bloating you have)

- try to avoid hard to digest foods / fodmaps for example Brussel Sprouts, Chick Peas especially get to me & I look pregnant and am in pain. Try to reduce these or avoid the common ones and you may see a difference

- sounds odd but try chewing your food more - sometimes we eat too quickly and can swallow extra air

- avoid dairy and instead take calcium & magnesium supplements - keep a note of if this helps

- avoid corn this again is hard to digest as is chilli & caffeine & can irritate the bowel

- ask yr Dr for a camera pill to view your intestines or an endoscopy / colonoscopy to try & see if there is an obvious problem

- have they ruled out Chrons, Heli P bacteria, an ulcer? etc ?

- are there any anti nausea meds you can take for chemo that can help? Do they think your chemo could be damaging the stomach?

- have they ruled out an Neuro endochrine tumour (unlikely to cause bloating) but worth them testing for when they're looking for a cause

Hope you get some progress on a diagnosis. Keep us posted!

[denvajade]

thank you all good advise, I have taken myself off lactose along with gluten, seems to have helped quite abit but will get tested. I only eat sweet potato and pumpkin and avocado at present. coffee is a good thought as I do have 2 a day.i had tests for ovarian cancer even though I have had them out you can get it in the stems left behind, all clear, but have the beginnings of bone marrow cancer and get checked every 3 months for any change, that is separate to the stomach thanks again will take it all on board. cheers

[Karen77]

It sounds like your situation may be unique, but from reading Wheat Belly and Grain Brain, I personally would avoid all GF products and stick to veg, fish and meat. I am not celiac, but I have Rheumatoid Arthritis and find that a grain-free diet works best for me.

[denvajade]

thankyou Karen77 the only grain I have is GF cereal, no wheat, my diet consists of cereal and yoghurt fro breakfast, now on salad for lunch and pumpkin, sweet potato and easily digested meat for dinner, pretty hungry really, but will go off the cereal and see how I go cheers

[Penel in reply to denvajade]

Hi Denvajade

I'm sorry to hear that your diet is so limited. If you are not getting enough good fats in your diet this can contribute to feeling hungry. Can you put some olive oil on your salad perhaps? And have full fat yoghurt? I usually add a banana or some berries and nuts to my plain yoghurt. Would you be able to eat eggs cooked in coconut oil?

There are also gluten free grains, like quinoa, which can be used for a breakfast or in the place of rice.

I hope you can get back to good health soon.

[denvajade]

Thank you Penel, I do have full fat yoghurt, but will start using some coconut oil, I do have it in the pantry. I think I might go off cereal all together and have an egg for breakfast. thanks again

[fneepette]

I have food intolerances to soya and dairy, and yes, just like you I swell up like I'm pregnant, go up two dress sizes round the middles, and fart so badly I blame the dog I haven't got. It's awful!

When it's that bad I have to go back to basics for a week - for me that's bread (I'm not GF, my partner is), vegetables, fruit, water and fish or poultry.

My partner is struggling with gluten (hence me being here), but the weight is falling off him. Is that normal?

[FitForLife]

I would recommend drinking Aloe Vera gel. A PT friend of mine is coeliac and drinks aloe to help her absorb nutrients from her food. It's also a natural anti-inflammatory and ideal to alleviate bloating and IBS (and many other digestive issues). You can read about it on my blog. Let me know if you'd like the link.

[denvajade]

Thankyou all for your replies, I am GF and went Lactose free, but still sick so gone dairy free now.

[beckymc]

Hi,

I had the same bloating issue and seemed like I really couldn't digest much of anything. Also, I was losing muscle mass which caused fatigue.

I found some capsule multivitamins that were easy to digest and I started taking gf protein powder/almond milk shakes 3 times a day. That began helping me and I added in a gf greens drink mix packed with vitamins. I have been only eating strictly gf solid foods that I am certain I can tolerate. I haven't bloated in over a week and I feel so much better it's amazing.

I think my digestive system wasn't able to manage hardly any 'normal' foods and the powder form of the protein and vitamins is finally allowing me to heal.

Hope this helps and good luck to you.

[beckymc]

Hi,

I had the same bloating issue and seemed like I really couldn't digest much of anything. Also, I was losing muscle mass which caused fatigue.

I found some capsule multivitamins that were easy to digest and I started taking gf protein powder/almond milk shakes 3 times a day. That began helping me and I added in a gf greens drink mix packed with vitamins. I have been only eating strictly gf solid foods that I am certain I can tolerate. I haven't bloated in over a week and I feel so much better it's amazing.

I think my digestive system wasn't able to manage hardly any 'normal' foods and the powder form of the protein and vitamins is finally allowing me to heal.

Hope this helps and good luck to you.

[beckymc]

Hi,

I had the same bloating issue and seemed like I really couldn't digest much of anything. Also, I was losing muscle mass which caused fatigue.

I found some capsule multivitamins that were easy to digest and I started taking gf protein powder/almond milk shakes 3 times a day. That began helping me and I added in a gf greens drink mix packed with vitamins. I have been only eating strictly gf solid foods that I am certain I can tolerate. I haven't bloated in over a week and I feel so much better it's amazing.

I think my digestive system wasn't able to manage hardly any 'normal' foods and the powder form of the protein and vitamins is finally allowing me to heal.

Hope this helps and good luck to you.

[beckymc]

Hi,

I had the same bloating issue and seemed like I really couldn't digest much of anything. Also, I was losing muscle mass which caused fatigue.

I found some capsule multivitamins that were easy to digest and I started taking gf protein powder/almond milk shakes 3 times a day. That began helping me and I added in a gf greens drink mix packed with vitamins. I have been only eating strictly gf solid foods that I am certain I can tolerate. I haven't bloated in over a week and I feel so much better it's amazing.

I think my digestive system wasn't able to manage hardly any 'normal' foods and the powder form of the protein and vitamins is finally allowing me to heal.

Hope this helps and good luck to you.

[beckymc]

Hi,

I had the same bloating issue and seemed like I really couldn't digest much of anything. Also, I was losing muscle mass which caused fatigue.

I found some capsule multivitamins that were easy to digest and I started taking gf protein powder/almond milk shakes 3 times a day. That began helping me and I added in a gf greens drink mix packed with vitamins. I have been only eating strictly gf solid foods that I am certain I can tolerate. I haven't bloated in over a week and I feel so much better it's amazing.

I think my digestive system wasn't able to manage hardly any 'normal' foods and the powder form of the protein and vitamins is finally allowing me to heal.

Hope this helps and good luck to you.

[beckymc]

Hi,

I had the same bloating issue and seemed like I really couldn't digest much of anything. Also, I was losing muscle mass which caused fatigue.

I found some capsule multivitamins that were easy to digest and I started taking gf protein powder/almond milk shakes 3 times a day. That began helping me and I added in a gf greens drink mix packed with vitamins. I have been only eating strictly gf solid foods that I am certain I can tolerate. I haven't bloated in over a week and I feel so much better it's amazing.

I think my digestive system wasn't able to manage hardly any 'normal' foods and the powder form of the protein and vitamins is finally allowing me to heal.

Hope this helps and good luck to you.

[miradax]

Could this be an intolerance to wheat rather than gluten? I've been coeliac since day 1 and the only time I have been bloated was in my early days before I was diagnosed at 18 month - eating at the wheaty goodness.

I have friends that claim to be wheat intolerant and complain of being bloated.

[Hidden]

HI, have you tried digestive enzymes? Usually the bloatedness from any food, not just gluten, can be related to low stomach acid levels and low digestive enzymes. I have found only one product that contains both of them and it works well for me. I live in South Africa and I think you will find it in other countries too. It is Solgars' digestive enzymes. It has most certainly reduced my bloated tummy after a meal by about 80%.

All the best.

Anne