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[Alybubbles]

Hi diagnosed gf 3 years ago, it seems now that everything I eat upsets my stomach. I’m so fed up. I nearly always feel sick, tired, back ache, low energy. Can anyone help?

[Hidden]

Have your villi healed and/or are you still having investigation by gastro?

[Alybubbles in reply to Hidden]

Not still being treated and no idea if things have healed

[Hidden in reply to Alybubbles]

You need to get back in the system again. You need to keep pushing it as the doctors/consultants will just allow you to drop out of system if you don't keep on their case. Reading down the thread - you were told possibly lactose issue but you have not avoided dairy. Seems obvious to go with that and see what happens. Any reason why you chose not to remove dairy from your diet to see if it would solve problem?

[Alybubbles in reply to Hidden]

I haven’t given up dairy because, being a vegetarian I eat a lot of cheese! But, you are right. I need to go lactose free.

I’m going to do it. Do I need to read food labels?

[Hidden in reply to Alybubbles]

Yes, similar to gluten, read all labels and be aware of things that are dairy-based but go under different names, e.g. whey powder, whey protein. There are some excellent gluten free vegan products out there also if you need chocolate substitutes (no one can live without chocolate), e.g. Booja Booja, or Halo Raw.

[Alybubbles in reply to Hidden]

Thank you. How long after stopping lactose, should I expect to see results? Because if the symptoms continue I’ll go back & see my gp

[Hidden in reply to Alybubbles]

It's entirely different for every person. I have allergy to milk. It's an issue if there is milk in my diet, not if there isn't. You should notice a difference pretty quickly to be fair.

[Alybubbles in reply to Hidden]

Thank you xx

[BabsyWabsy in reply to Alybubbles]

Mature cheeses, eg. mature cheddar, Parmesan, Swiss and authentic Greek yogurt contain no lactose because the natural fermentation during manufacture has used it up. Many dark chocolate brands are milk free. Moo Free is a 'milk chocolate' without cows milk. TBH I haven't tried it, I'm a dark chocolate gal.

[Alybubbles in reply to BabsyWabsy]

That’s good, thanks. Yes, I like dark chocolate as well x

[Penel in reply to Alybubbles]

Perhaps try some goats milk kefir? Very low lactose. It’s an acquired taste!

[Hidden]

Hi Alybubbles.

You mention 'gluten intolerance' not coeliac on your profile - have you had a formal diagnosis of coeliac, and any follow up to show if the damage to your GI tract is repairing/follow up blood tests?

Also - you mention having 2 ulcers. Were you tested/treated for h-pylori/helicobacter pylori bacteria? Do you still have the ulcers?

There are a number of issues, if both of the above are fine/have been treated - small intestinal bacterial overgrowth (SIBO), fungal overgrowth (candida), intolerance to other foods (e.g. lactose/dairy products, foods high in histamine/histamine intolerance, etc.), colitis, etc.

If you eat a lot of gluten free processed products there may still be enough gluten in them to make you ill, or it could be the overwhelm of additives in gluten free foods.

Cross-contamination in your kitchen or eating out may be an issue, if it's still a gluten problem.

Do you have pain as an issue, or just digestive issues?

I think it would be difficult for anyone to diagnose you via this web forum, but no uncommon for those to have coeliac/gluten intolerance to still struggle. It's a case of eliminating the usual-suspects, and making sure you stay on track with getting your doctor/gastro to keep investigating until you have answers. It's frustrating for sure.

[Alybubbles in reply to Hidden]

I haven’t had any follow up! I was given Omeprazole for the ulcers & it was suggested that I might have a lactose intolerance as well. I try not to eat too much gf stuff, I try to home as much as possible, but I’m getting fed up, I eat & I don’t feel well, even eating salad! X

[Hidden in reply to Alybubbles]

Are you actually tested/diagnosed with coeliac, or is it non-coeliac gluten intolerance?

Were you tested and/or treated for h-pylori(the bacteria that causes stomach ulcers)?

How long have you being taking the Omeprazole for, and are you still taking it?

Have you become/stayed dairy free?

[Alybubbles in reply to Hidden]

Because I always suspected that I had a gluten intolerance, I stopped eating it. I went to see my gp when my stomach got really sore. This was combined with lower back ache, change in bowl function, tiredness etc. They did all kinds of tests including colonoscopy & endoscopy, scans, blood tests. Everything came back normal except for riding 2 ulcers. They said I was probably gluten intolerant, but because I had stopped eating gluten they couldn’t say for definite. I was put on Omeperazole & told to take it just fir 2 weeks. I went back to see my gp about 4 months later to say I still was having problems & she said to try lactose free - but I haven’t actually done it. X

[Hidden in reply to Alybubbles]

Gluten intolerance and coeliac are not the same thing, so really what the doctor should have been ruling out was coeliac, and then opting for gluten intolerance. There is no specific test for gluten intolerance, but there is for coeliac, and as you're probably aware, only works if gluten in the diet.

You are, like many of us, living gluten free without the definitive answer.

With regards the ulcers, the main cause of ulcers is h-pylori. You should have had the test for that, and treatment with antibiotics if positive. Taking the Omeprazole will not fix ulcers if h-pylori present. I suggest you ask your doctor/GP for the blood test for h-pylori.

I would also ask for referral for SIBO test (it's a breath test), or you can get that done private (Functional Gut Clinic is one option). That too, if positive, needs specific antibiotic treatment. Overgrowth of the wrong bacteria can lead to digestive symptoms similar to coeliac/gluten intolerance.

Also worth looking at histamine intolerance and MCAS as that seldom if ever will be tested for, is tricky to diagnose, but is triggered by high histamine foods.

But ultimately, if you don't follow dairy free diet you have no way of knowing if this issues are caused by dairy/lactose, and that seems the most obvious one to try. It will only take a few weeks of dairy free for you to figure out if it is/isn't that. Try lactose free first if it's too much of a leap, but dairy easy to avoid for a few weeks for trial purposes.

If you have an issue with gluten grains you may also have issue with all grains in general, so maybe few days of avoiding all grains will give you some insight.

Not sure if any of the above would cause lower back pain though.

I think, more than anything, get yourself back into the GP/Gastro route of referral again and work through the list of options until the problem is resolved/more clear. There's things in this you can try in the meantime yourself. The blood test for hypylori can be done by your GP. The rest probably needs referral back to Gastro.

[Alybubbles in reply to Hidden]

Thank you x

[Researchfan]

Second what Mise replied.Your symptoms, especially low energy, could point to vitamin deficiency. You need to get your gp to test your b12 and folate. Especially with stomach troubles and ulcers, as well as being on omprezole, won’t absorb b12. You could be anaemic. Either iron deficiency anaemia from bleeding ulcers possible. And or b12/folate anaemia from not absorbing nutrients. Could be reason you feel sick and tired and aches and pains.

Individuals with coeliac and gluten intolerance at increased risk of b12 deficiency in addition. Lactose intolerance is known about but equally newly diagnosed coeliacs are supposed to be followed up for b12/folate as higher risk of pernicious anaemia (autoimmune affecting stomach so can’t absorb b12 and need life long b12 injections every 2-3 months).

Might be worth trialling 1-2 weeks strict dairy free as casein in cheese and milk can cross react and be treated like gluten by the body. Up to 50% of coeliacs also react to dairy.

Aside from gluten intolerance, cows milk is the number one allergen and research links it to other gastrointestinal disorders (especially ones involving ulcers). Treatment for H. Pylori is with two antibiotics and omprezole as a course.

Get back to your GP you deserve to feel well!

Take care

[Ukulelelady1]

There’s a lot of really good answers on here, I would just like to add something else into the mix. It could be you have a problem with FODMAPs I have coeliac disease and have never been able to eat dairy of any description since my diagnosis. A year or so after I gave up all gluten, I was finding I was also starting to have stomach issues again and my consultant put me in touch with a dietitian. I was told to follow a low FODMAP diet, I was reluctant at first because I already had intolerances to soya, dairy etc. and a couple of food allergies and thought I’d be very restricted, but because I was getting no further, I decided to try it. This is a diet which is not long term, although it did take me longer to re-introduce foods back into my diet. Look the low FODMAP diet up on line, it’s easier than explaining it all on here. Don’t dismiss what others have said either, but it is something else to consider and there’s a good chance it will work.

[Alybubbles in reply to Ukulelelady1]

I’ve got the Low Fodmap book I’m going to give it a go. Thanks xx

[Penel in reply to Alybubbles]

Hope the diet works for you. I’ve found it really helpful.

[Ukulelelady1 in reply to Alybubbles]

Hope it goes well 😊