Diagnosed Coeliac & Confused

[Mansfac7]

Hi all,

A while back I had some bloods taken to check for coeliacs disease and they came back as likely. This was about 9 months ago now. So i changed to a GF diet.

I recently had an endoscopy which the GE DR said I was showing as still eating Gluten because by stomach was a little bit Inflamed. The endoscopy also showed a mild case of Acid Reflux. Can eating Gluten when a coeliac cause some acid reflux?

The reason I ask, is because 2 days after eating out at a pub (this was mid-aug 2020) I started feeling sick 24/7 and that went on for 3 days then i went back to normal again. Then I had another episode of feeling sick, this time the DRs gave me Omeprazole for the acid reflux, even though I didnt feel like i was getting heartburn or other symptoms.

Since taking Omeprazole I have been bloated every day no matter how much or little I eat.

I also have not much of an appetite, I dont feel hungry but can eat.

I have lost 9kg in 4 weeks without doing much exercise

What would you recommend needs doing to get to the root cause? Stop taking the Omeprazole and identify the Cross Contamination?

Thanks

[Cooper27]

I think there is a tendency for most people with autoimmune disease to suffer from low stomach acid, and taking omeprazole with low stomach acid can make you feel pretty rubbish. it's up to you whether to suffer through with taking it. I found digestive bitters really helped to settle my stomach when I stopped taking it, so it's worth trying some of that.

When you eat out, do you ensure the restaurant knows how to avoid cross contamination? For example, checking that they use a gluten free fryer and separate food preparation area? Did you take steps to de-gluten your household? E.g. replacing your toaster and cooking utensils?

[Mansfac7 in reply to Cooper27]

I havent been on PPIs for very long. Maybe 9-10 days. But as soon as i took them I felt bloated.

I didnt take steps massively, I bought a new toaster and stupidly now, split between GF and gluten bread (seperate slots) Now i know this doesnt work so I use toastie bags. I didnt change anything else really. We dont have too much Gluten in the house anymore.

I plan to give everything a good clean tomorrow.

[Cooper27 in reply to Mansfac7]

I don't think the sensation got any better for me with omeprazole, it stayed until beyond when I stopped it, until I took something to improve stomach acid again.

It sounds like cross-contamination might be your issue on the coeliac issue, it's a steep learning curve. Do the deep clean, give it a month or so and see how you feel

[Mansfac7 in reply to Cooper27]

Thanks.

What is your thoughts on the PPIs. You said you took something to improve stomach acid again?

[Cooper27 in reply to Mansfac7]

I took digestive bitters - you buy it in health food shops. It just helps to stimulate stomach acid production, but it isn't particularly acidic, so it doesn't irritate and already irritated stomach

[knitwitty in reply to Mansfac7]

I'm not a coeliac but I have autoimmune thyroid disease and I have been completely GF for about 2 years now.I too used to get massive acid reflux and was prescribed omeprazole. My GP would have been happy to have me on it for years. I found that gluten would usually cause acid reflux if I accidentally ingested it.

As Cooper suggests above many people with autoimmune conditions often also have low stomach acid and eventually I thought that this could be the root cause of my reflux, so I slowly weaned myself off the omeprazole over I couple of months ( I had been taking it for many months ). I then started to take a dessertspoonful of acid cider vinegar diluted in water before meals and sometimes before going to bed at night. This completely halted the reflux so I guessed that the problems were down to low stomach acid after all.

I did some research and found out that when you have too little stomach acid the valve at the top of your stomach fails to close completely which leads to the reflux, I suspect that when you're lying down this is even more likely to happen. When the stomach acid is increased it can lead to a cessation of the reflux.

I never deliberately eat anything containing gluten and very rarely suffer from reflux these days, but if I have overindulged in sugary foods this can sometimes trigger a bout of reflux so I always have a bottle of organic apple cider vinegar ( with the mother - this looks like a cloudy sediment in the bottom of the bottle )in the fridge and I just take a dose diluted with water.

My son is a coeliac and he used to suffer with reflux, but since he has been gluten free that seems to have gone completely.

Good luck.

[Mansfac7 in reply to knitwitty]

Thank you for the tip. I have just done research on it and I have had a fair few of the low stomach acid symptoms.

How long did you take it for?

[knitwitty in reply to Mansfac7]

I took the omeprazole for about a year and then weaned off it over about 6 weeks, as nurse friend said that if you go "cold turkey" you might get a huge backlash. I waited about a week after I had completely finished taking the omeprazole and then started the ACV, the effect was almost instant. Now I only take it occasionally or if I've eaten something too sweet or sugary.

If you google a test for low stomach acid it tells you to mix bicarbonate of soda with water and drink on an empty stomach and then time how long it takes for you to burp, I think it is quite a reliable way of testing whether your stomach acid is low, but I think you would need to be off any medication for a week or two to get a reliable result.

Also I can't remember the quantities you need to mix up but if you google it I'm sure you'll find out.

Good luck.

[Hidden in reply to knitwitty]

"was prescribed omeprazole. My GP would have been happy to have me on it for years". And this is why GPs are killing people. Sounds harsh, but true. PPIs are dangerous in longerm use and evidenced as leading to early deaths.

[knitwitty in reply to Hidden]

Tell me about it ! my GP said it was completely harmless and that maybe there was a tiny risk of bowel cancer in very long term use, but in his words, "nothing to worry about".

I did my own research, as I had to do when dealing with an underactive thyroid too, and decided to take matters into my own hands, I would not touch omeprazole with a barge pole now.

[Hidden in reply to knitwitty]

Good on you! We would be lost without internet for research.

[Mansfac7 in reply to Hidden]

We certainly would. I tried to have a conversation with a GP about low stomach acid. They were having absolutely none of it.

The only thing to think about, if I stop PPIs and the symptoms go away does this mean my esophagitis has healed? Or is it just lurking in the background still causing damage.

[Hidden in reply to Mansfac7]

I'm no expert, but no symptoms would imply at least a reduction, if not full healing. Again, I would not hazard any guesses on this with my own limited knowledge. Also, as an aside, lot of people with coeliac are intolerant to milk. Some regain telerance once coeliac damage repairs/enzymes return to normal. Might be worth considering that also. You will, if you cut out dairy, need to get your calcium elsewhere, but might be someone to look at.

[Mansfac7 in reply to Hidden]

I have read research on that also. I feel fine when I have had Milk.

I actually don't mind using Coconut Milk/Soy/Hazlenut, not too bad! They add in Calcium & B vitamins as well.

I have also felt my muscles progressively seize more each night in bed since taking PPIs which suggest they are blocking some update of Vits/Minerals.

I am determined to get to the bottom of this with or without the GP.

I find talking to people and getting their views & experience very enlightening and helpful.

I've just emptied my cutlery tray from the drawer and there is TONNES of crumbs in it. I have taken all the cutlery out, soaked them in water. Then rinsed off throughly with clean running water and will re-wash them again. I have also scrubbed the sink. Will throw away the old cutlery tray and buy a new one today.

[Hidden in reply to Mansfac7]

You're going to be sorry you ever asked us! Bet you hadn't anticipated a September spring clean ; ). You'll get the hang of it and become more aware of the hazards. I don't have a dish washer, but when visit relatives theirs seems to not remove all crude from cutlery/plates, so hazard. Tea towels, hazard. Just think your way through your kitchen.

If your ok with milk, then that's a bonus.

[Mansfac7 in reply to Hidden]

Haha, i most certainly haven't.

HOWEVER i do not ever really want to feel how i feel when i feel ill. But its good for weight loss which is a bonus.

Shall i just stick to 1 ACV drink per day and see how it goes?

[Hidden in reply to Mansfac7]

No harm. Some think it's an old wives tale, others swear by it. I think, it natural, it's not going to kill you, so why not. Just be aware of tooth enamel issue with apple cider vinegar. I have taken apple cider vinegar and honey in the past, but made sure to drink through straw and rinse out with water afterwards. It was actually quite ok and not unlike cider.

[Ukulelelady1 in reply to Hidden]

It can also cause osteoporosis and as I already had osteopenia (a pre-curser to osteoporosis) due to undiagnosed coeliac disease for many years, I came off off them - they can stop you absorbing calcium.

[Hidden in reply to Ukulelelady1]

That's an important one!

[Mansfac7 in reply to Hidden]

I have been drinking ACV with some honey on warm water. Feel like it’s going ok. I got some of the ACV gummies now to protect my teeth from erosion and my esophogus from additional irritation.

[Hidden in reply to Mansfac7]

Sounds good. Keep us posted.

[Regalbirdy]

Hi Mansfac7,

I agree with the others regarding the connection between low stomach acid and Coeliac Disease.

Something I have found to be helpful recently, is a supplement called Betaine HCL. It works in a similar way to the bitters Cooper mentions, however it should never be taken by anyone who has (or who suspects they may have) a stomach ulcer. If you go down this route, consider getting some proper medical advice before you take it; and make sure that you choose a brand that includes pepsin in it as well - as it works in conjunction with the Betaine HCL in the stomach.

I used to have a lot of acid reflux - so you have my sympathies. Mine stopped naturally after I switched to a keto diet. I can only presume it was because I reduced my sugar and carb intake by around 90% (I now get my most of my main energy from healthy fats instead - coconut, avocado, hemp etc). I do wonder if an imbalance in the gut flora/microbiome contributed to my overall symptoms. To this end, these days I try to support my gut by eating more prebiotic foods such as home-made sauerkraut.

Unfortunately it does rather sound like you got glutened. Eating out in pubs can sometimes be a little like playing Russian roulette. Feel free to give any eating establishment the 3rd degree! The good ones will be able to give you sensible and informed answers. Please avoid giving your business to the ones who can’t. With time it gets easier work out which are which...!

[Mansfac7 in reply to Regalbirdy]

Thank you for the reply! All of your help has been greatly received.

I will have a conversation with my GP as I feel the PPIs aren’t working, they have caused more problems.

I have just taken some gaviscon before bed as prescribed by my GP and I went from no symptoms to feeling of heartburn and something in my throat......

[Mansfac7]

So I have just had my first mug of ACV with honey, little bit of lemon juice and cinnamon. Diluted 1 tbsp with 450ml water.

I haven’t taken any omeprazole today and I have had cereal for breakfast.

I can say the ACV has taken away any symptoms of Acid Reflux, but it has made me feel a little nausea.

I wonder if this could be to do with not taking the omeprazole and then taking ACV. Maybe it’s too much all at once?

[Hidden]

I think you have answered your own question - ditch the omeprazole and sort out the cross contamination. You can not take half-measures and using dual bread toaster is a disaster. If you don't step up and take the cross contamination seriously, you will always be in this position. Coeliac is a disease of ever-vigalance. All the gluten free bread in the world is a waste of time if putting it in toaster where normal bread toasted, even if it is in separate slot. Chopping board - buy and keep a gf one. Cutlerly drawers - always full of crumbs. Grills - high risk, etc., etc. You need to also look at the quality of the GF products you are eating and the hidden gluten in ingredients. In terms of the omerprazole - long term use is dangerous and linked to kidney disease in formerly healthy patient. Short-term should be ok, but does not sound like it's agreeing with you.

[Mansfac7 in reply to Hidden]

I think you are right.

The sickness has gone away now. I have a bit of what feels like "Phlegm" in my throat which comes and goes.

Just feel quite tired, but thats due to not sleeping very well since taking the PPIs.

So plan is, clean the entirety of the kitchen throughly, pop to the shops to buy a new Chopping Board ETC.

While the wife is out I will throw out any single thing that contains gluten.

See how the next few days goes.

[Hidden in reply to Mansfac7]

Your wife is in for interesting times!! I feel for the partners of those with coeliac - it becomes a family business that everyone needs to join.

It's learning curve. We've all been there, so you are learning by mistake/error/experience. The longer you keep gluten out of your diet the higher your sensitivity seems to become also, so it's a case of ever-decreasing circles cross-contamination tolerance.

Good luck!

[Mansfac7 in reply to Hidden]

She has been very supportive to be fair. So has her dad who is staying with us because of Corona. They both eat what I eat, I used to buy them normal bread products, like crumpets & Muffins. I will cut this out now. They don't seem to mind eating my GF bread.

Also, so far today, I have had no bloating in my stomach that I can tell. For the first time since taking PPIs.

Be interesting to see what the next week brings!

[Ukulelelady1]

I would say yes, but also, if you felt sick, it sounds more like a cross-contamination issue. I took PPI’s for years but decided to come off them, due to the fact they can cause osteoporosis and also, as you get older, you produce less stomach acid, and less stomach acid isn’t good as it makes you more susceptible to bugs. Did you know that much of the immune system starts in the gut? Another suggestion, instead of apple cider vinegar, you could try a Gluten Free acidophilus (I buy a dairy free version from the health shop). It balances the natural flora in the gut.

By the way it can take over a year to heal your gut after coming off gluten, so maybe that is why your stomach still looked inflamed. (They usually wait more than a year to do another endoscopy to see if the gut is healed.)

[Mansfac7 in reply to Ukulelelady1]

I take Actimel or Probiotics each day. Is this similar Acidophlus?

I think you can even get ACV as a tablet now?

The endoscopy I just had was the first one, before that it was using blood tests. The GE has diagnosed me as coeliac.

[Ukulelelady1]

Does Actimel contain sugar? I don’t take it as I’m dairy intolerant as well as coeliac. Which probiotic fo you take?

[Mansfac7 in reply to Ukulelelady1]

I think it may contain sugar. Definitely contains lactose. I think you may be able to get a sugar free version.

[Mansfac7]

So my first night without ppi did not go so well. Kept waking up every 2 hours and I feel like I haven’t had any sleep whatsoever.

Think this is caused insomnia.

I haven’t slept well at all for the past week or 2. Not quite sure if it’s the PPi or acid reflux.

[Ukulelelady1 in reply to Mansfac7]

Have you looked on the leaflet of your PPI’s to see if there are any effects of coming off it suddenly- apart from the risk of reflux obviously. Drugs of any description can cause side effects/effects. I remember when I came off caffeine, I started having very vivid dreams each night, whereas, before that, I couldn’t even remember any; it was probably because I was sleeping more soundly.

[Mansfac7 in reply to Ukulelelady1]

So I am now on day 4 of not taking Omeprazole. I can feel my stomach returning to normal, I can eat more and I have a lot less bloating.

However, I still get the feeling of a lump in my throat which comes and goes.

Also I keep waking up at roughly the same time each morning, 5:30am, I don’t get back to sleep properly. Leaving me really tired in the morning. Last couple nights I have had some weird dreams.

[Ukulelelady1 in reply to Mansfac7]

It sounds like you are still withdrawing from the PPI, If you get regular reflux, it takes a while to repair. Stomach acid is very strong, so I can imagine you still feeling a lump in your throat. The fact that you’re waking early suggests that acid is still coming up into your throat while you sleep. Have you tried elevating the top end of your bed (perhaps on books or bricks) a little, to stop this from happening? My partner has made some blocks which fit round the feet of our bed to raise it, which helps.

Also, make sure you don’t eat for at least 3 hours before you go to bed and cut back in sugar.

[Mansfac7 in reply to Ukulelelady1]

Yeah it feels like it too. Don’t have the lump in the throat at the moment today, but have a bit of a burning sensation in my chest. Mainly because I haven’t eaten yet.

I do have a wedge pillow which I find very difficult to sleep on. I can always give that another for for a few days to see what happens.

It’s nothing intolerable. I think not sleeping is the worst thing at the moment.

[Ukulelelady1 in reply to Mansfac7]

The trouble with wedge pillows is, once you put your head on it, it sinks into the pillow and may not solve the problem. If you raise the bed itself at the top you won’t have that problem. The not sleeping, could still be because of reflux, so what have you got to lose?

[Mansfac7 in reply to Ukulelelady1]

Nothing, I will give it a try tonight see how I get on!

I read it takes between 1-2 weeks for the stomach acid to settle down after coming off PPIs.

[Ukulelelady1 in reply to Mansfac7]

Oh definitely, I would agree with that, as it was the case for me before it settled down. Good luck with the raised bed and hope it works out for you.

[Mansfac7 in reply to Ukulelelady1]

Thank you for all your help! I’ll post an update in a few days!

[Ukulelelady1 in reply to Mansfac7]

No problem.

[Mansfac7]

Morning, So a little update on how things are.

On the whole I am 95% better, Had a few days of reflux issues such as lump in throat and a the feeling in the chest. I have managed to get 3 full nights sleep in a row now which is amazing, the symptoms seem to be alleviating every day. Only thing I have left is a sort of dryness in my chest / dry cough.

I have noticed the bloating feeling I get after eating has subsided each and every day since stopping PPIs. To the point I do not really bloat.

I take ACV gummies each morning with Breakfast and Probiotics at dinner.

Hoping the best symptoms go away in the next couple days.