Can anyone offer any advice/help please!

[Sammy Web]

Hello! I'll try and keep this short and to the point.

I was diagnosed with ibs/gerd last year, I took omeprazole around 6 months ago and that knocked me about a bit/prolonged the issue. Happy to get off that.

Whilst on omeprazole , I noticed I was sensitive to gluten/caffeine, I pretty much cut them both out completely and they helped my symptoms a lot. On my stag do for example I couldn't drink lager it gave me incredible stomach pains and anxiety, but drinking cider I felt completely fine.

I got tested for celiac disease but that came back negative. My own take was the last of stomach acid made it difficult for me to digest the gluten and the caffeine made my stomach acid which caused irritation.

After the omeprazole (I took for I think 8 weeks) noticed I wasn't as sensitive to gluten or caffeine, however stuck to whole grains and tea and still to this day don't drink coffee (I used to drink 2-3 strong cups a day). And find whole grains easier to digest.

I was also advised to start supplementing vitamin D because my levels were insufficient. I used a low dose spray over winter but stopped after a month or so because I felt like my energy levels were back to normal, after a few weeks I started to begin feeling tired again so recently started back up again, feeling better after day 4 so shall stick with that.

However, recently I've been feeling like maybe I do still have a gluten intolerance, or whether it just triggers my ibs. 

I've began to notice after 5 or so hours after lunch, before tea (if I leave it too long), that I get a slight low mood and brain fog until I eat, I don't know whether this is normal, because 6 months prior I'd never experienced it, however I've recently noticed that it's much worse, (maybe only ever happens) on days when I have toast for breakfast or a sandwich for lunch, or both. Basically on days when I seem to over indulge in gluten. If I have porridge for breakfast and a wrap for lunch this seems to happen. I also notice that I have less of an appetite after I eat gluten, so I'm wondering whether it could be that and that I need to eat but haven't worked up an appetite yet.

Could anybody offer any advice ? Could this just be ibs, cortisol increase/bread affecting blood sugar more, could it be gluten intolerance and it kicking in hours later, causing the brain fog? I seem to be fine with some gluten, but like I have a threshold potentially.

if you can it will be wonderful, I'm very tired of going back and forth over the beliefs of my own body . Thank you!

[Scott Adams]

It sounds like you’ve been through quite a journey with your digestive health, and it’s great that you’ve been able to identify some triggers and make adjustments that have helped. Based on what you’ve described, it’s possible that gluten could still be playing a role in your symptoms, even if celiac disease has been ruled out. Non-celiac gluten sensitivity (NCGS) is a condition where individuals experience symptoms like bloating, brain fog, fatigue, and mood changes after consuming gluten, despite not having celiac disease or a wheat allergy. Your experience of brain fog, low mood, and reduced appetite after consuming gluten-heavy meals could align with NCGS, especially since you’ve noticed a pattern with toast, sandwiches, and other gluten-containing foods.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

That said, your symptoms could also be related to IBS or blood sugar fluctuations. Gluten-containing foods like bread can cause blood sugar spikes and crashes, which might explain the brain fog and low mood several hours after eating. Additionally, gluten can be harder to digest for some people, potentially triggering IBS symptoms like bloating or discomfort, which might indirectly affect your mood and energy levels. The fact that you feel better with whole grains and smaller amounts of gluten suggests you might have a threshold for tolerance, which is common in both NCGS and IBS.

Since you’ve already made positive changes like cutting back on caffeine and incorporating whole grains, it might be worth experimenting further with a low-gluten or gluten-free diet for a few weeks to see if your symptoms improve. Keeping a food diary could help you track patterns and identify specific triggers. Additionally, ensuring you’re eating balanced meals with protein, healthy fats, and fiber (from non-gluten sources if needed) might help stabilize your blood sugar and reduce the brain fog. If the symptoms persist, consulting a dietitian or gastroenterologist could provide more personalized guidance. It’s also worth noting that stress and cortisol levels can exacerbate digestive issues and mood changes, so managing stress through relaxation techniques or mindfulness might help too. Hang in there—it’s a process, but you’re clearly on the right track by paying attention to your body’s signals!

[cristiana]

Hello @Sammy Web and welcome to the forum.

Just one question - you say you pretty much cut out gluten and caffeine.  Were you eating gluten when you had your coeliac blood test?

Cristiana

 

 

[Sammy Web]

@cristiana Hello ! the first time I sent it off there was a failure and they needed to be redone , whilst I was waiting for this information I was off gluten, then I reintroduced it for a couple of days before going to have it tested again. But I had such a low score that the doctor said it would be quite unlikely to be celiac based off my results, even after only eating for a few days.

@Scott Adams thank you sir! I shall lay off the gluten for a few weeks and take it from there. I shall keep posted! Thanks again

[trents]

Sammy,

I have doubts as to whether you were eating enough gluten to render any of the celiac testing you had done valid. Recently revised guidelines for pretest celiac blood antibody analysis is the daily consumption of at least 10 g of gluten (about the amount found in 4-6 slices of wheat bread) for at least 2 weeks before the blood draw. 

[knitty kitty]

I agree with @cristianacristiana, @Scott Adams, and @trents.  You probably weren't eating sufficient gluten for the test to be accurate.  

Ten grams of gluten for at least two weeks before testing is needed for accurate blood tests.  

Three gram of gluten is enough to make you feel unwell.  Ten grams of gluten is required for the antibodies to leave the intestine where they are made and get into the blood stream where they can be properly measured.  

A genetic test can determine if you have any of the known genes for Celiac disease.  

Edited March 19 by knitty kitty
Typo correction

[Sammy Web]

@Scott Adams @knitty kitty @cristiana @trents Thank you everyone, I should add, I forgot to mention, I did have an upper endoscopy around the time and that came back all clear/perfectly fine , so with both of those I always ruled out celiac disease , especially considering sometimes I'm absolutely fine with gluten

[herminia]

Such a confusing disease! I tested positive with both tg tests so I have been taking Omeprazole for years with good results, although for several months now am experiencing increased nausea and pain on a daily basis and have added ondansatron for "those" days. Low-grade pain in left abdominal quadrant is a daily constant, and doctors have not taken interest in that aspect. I do my best to stay away from gluten but it's difficult to enjoy simple meals like a refreshing sandwich with the gluten-free breads available. ( I was trying to eat a hot dog, but the Scharr bread was crumbling as I held it and gummy as I chewed.)

Q: which bread has anyone found to be best for sandwiches and toast?

[trents]

1 hour ago, herminia said:

Such a confusing disease! I tested positive with both tg tests so I have been taking Omeprazole for years with good results, although for several months now am experiencing increased nausea and pain on a daily basis and have added ondansatron for "those" days. Low-grade pain in left abdominal quadrant is a daily constant, and doctors have not taken interest in that aspect. I do my best to stay away from gluten but it's difficult to enjoy simple meals like a refreshing sandwich with the gluten-free breads available. ( I was trying to eat a hot dog, but the Scharr bread was crumbling as I held it and gummy as I chewed.)

Q: which bread has anyone found to be best for sandwiches and toast?

herminia, Omeprazole may mask some of the symptoms of celiac disease but it will not prevent the damage being done to the villous lining of your small bowel that defines the disease. You seem not to be taking that very seriously.

[knitty kitty]

@Sammy Web,

PPI's like Omeprazole suppresses your ability to produce antibodies to gluten.  So if you had the tests done while you were taking Omeprazole, the tests won't be accurate.  

Omeprazole will cause villus damage.  Not all the damage in Celiac is visible to the naked eye, especially in the early stages.  Damage to the intestines can be microscopic.  Were biopsies taken to look for microscopic changes? 

You would be wise to stay off the Omeprazole, redo the gluten challenge and get tested again.  

The Impact of Acid Suppression Medications and Non-steroidal Anti-Inflammatory Drugs on Clinical and Histologic Features in Celiac Disease

https://pmc.ncbi.nlm.nih.gov/articles/PMC5511753/

"PPI/H2RA users comprised 12% of seropositive patients, compared to 55% of seronegative patients (p<0.01)."

"PPI/H2RA use was associated with seronegative celiac disease."

Edited March 19 by knitty kitty
Added link

[knitty kitty]

@herminia,

Welcome to the forum!

Omeprazole is only supposed to be taken for a few weeks!  Omeprazole can cause villus  damage to the small intestine by itself.  Shame on your doctors for letting you be on it for years!  Shame on your doctors for not taking an interest in your worsening symptoms!  Omeprazole is a temporary fix, a bandaid, not a cure!

Omeprazole is prescribed for Gerd, to lower stomach acid, but Gerd is a symptom of low stomach acid in the first place.  Taking Niacin and Thiamine and the other B vitamins will increase stomach acid normally.  Magnesium or calcium can be taken after meals to help, too.

Omeprazole can affect vitamin and mineral absorption.  Thiamine, Vitamin B 1, can used to prevent nausea.  A combination of Thiamine, Cobalamine B12, and Pyridoxine B6 can be taken for pain without side effects.

Have you been checked for nutritional deficiencies?  

[cristiana]

Hi @herminia

I am not sure reading your post if you are actually consuming gluten still, or are tempted to do so, but if the former, that's what is most likely causing your worsening pain.

If you aren't consuming gluten, you may find that the Omeprazole is actually causing issues by causing low stomach acid as @knitty kitty suggests.

You may well be able to gradually wean yourself off Omeprazole.   There are quite a few discussions on this and other forums on how to do this. 

As you reduce your dosage, I would also recommend eating a reflux or gastritis diet,  so avoiding spicy food, caffeine, citrus, alcohol etc for a while, eating small regular meals, not eating or drinking for 2-3 hours before you go to bed, allowing your stomach to rest overnight properly, using a wedge pillow if you suffer from reflux. 

Unless of course you have a medical condition, such as Barrett's Esophagus, for which I understand you do need to take PPIs long term.

Cristiana

Edited March 19 by cristiana

[Scott Adams]

9 hours ago, Sammy Web said:

@Scott Adams @knitty kitty @cristiana @trents Thank you everyone, I should add, I forgot to mention, I did have an upper endoscopy around the time and that came back all clear/perfectly fine , so with both of those I always ruled out celiac disease , especially considering sometimes I'm absolutely fine with gluten

It's possible celiac disease has been ruled out, but that depends on whether you followed the proper protocol of eating tons of gluten for at least 2 weeks before the endoscopy. If you were eating minimal gluten during that time your results could be false-negative. If they did the endoscopy for celiac disease you should have received results--feel free to share those here if you'd like to.

[knitty kitty]

@Sammy Web,

Have you had a genetic test which looks for the most commonly known Celiac genes?  

Not having the Celiac genes is the only way to definitively exclude Celiac Disease.

[Sammy Web]

@knitty kitty no genetic tests, live in the midlands UK and google didn't even throw up any options for that other than they cost a "few hundred dollars".
 

They did the endoscopy, the results were that my stomach was completely normal , no signs of inflammation or anything abnormal whatsoever. Hence I felt that ruled out celiac , I've been tested twice in my life , once in 2022 when my levels were 0.3, this time just they were 0.2

 

[Scott Adams]

Do you mean your tTg-IgA levels? Do you happen to have the reference range for a positive test if that is the case?

[trents]

18 hours ago, Sammy Web said:

@knitty kitty no genetic tests, live in the midlands UK and google didn't even throw up any options for that other than they cost a "few hundred dollars".
 

They did the endoscopy, the results were that my stomach was completely normal , no signs of inflammation or anything abnormal whatsoever. Hence I felt that ruled out celiac , I've been tested twice in my life , once in 2022 when my levels were 0.3, this time just they were 0.2

 

Celiac disease does not damage the stomach. It damages the lining of the small bowel, the part of the intestines immediately below the stomach. Also called the duodenum. Do you know if biopsies were taken from this area to look for celiac disease?

Edited March 20 by trents

[Sammy Web]

@Scott Adams that's the one, 5+ it says, and my level was 0.2..

 

@trents no they didn't  , but doesn't celiac make you really poorly ? This definitely isn't the case . 

[cristiana]

@Sammy Web   I think the whole time I've been on this forum I've only come across one British person who has had the coeliac genetic test.  Obviously that doesn't mean others haven't, and I may have missed other posts, but it is my understanding that the NHS don't offer the testing routinely.  I'm from the UK, too.

I know that that when I have had biopsies, I've been given a little diagram printed out of where the samples were taken from. If you look through your paperwork (if they gave you any) you may be able to see where they took the samples from.

[trents]

"no they didn't  , but doesn't celiac make you really poorly ? This definitely isn't the case."

Make you what poorly? @Sammy Web, I think you left out a key word there.

[Sammy Web]

No that's what I meant , makes sense to me, really poorly as in very unwell , I don't feel very unwell at all

[trents]

Okay, so, "make you feel poorly or experience poor health" then.

Many celiacs in the early and middle stages of progression are not doing poorly. We call them "silent celiacs". They are largely asymptomatic. 

[Sammy Web]

Thought i was on a celiac forum not taking my high school English exam, that sentence makes perfect sense to anyone in the UK thank you.

You seem to be pushing the agenda of a celiac diagnosis, according to this thread it seems to be hard to spot and mostly asymptomatic. So I'm not sure why the hard push, avoiding and/or lowering gluten seems to be a suitable option.

[cristiana]

Hi Sammy

Don't worry I understood the English, and I'm from the UK.🙂

Trents is quite right, though, it is possible to feel perfectly well and have coeliac disease.  

Cristiana

[trents]

@Sammy Web, I'm sorry if I offended you. I was just seeking some clarification. Colloquialisms vary from place to place in the English speaking world. They can even differ from place to place in a given English speaking country.