Suspected stomach ulcer

[KL443]

Hi,

I’ve stumbled across the celiac.com forums and hoping for some advice, as my GP practise seem to be fed up of me and I’ve been told to go to A&E if I’m vomiting blood or have blood in poo otherwise wait for my I endoscopy in 2.5 weeks. Sorry it’s a long one….

I have had loose stools, bloating, abdominal discomfort for over a year. After a colonoscopy came back clear I was told I have IBS. I modified my diet trying low Fodmap but symptoms persisted. 3 months ago I broke down on the GP as I had upper abdominal pain that was waking me at night, and still not passing solid bowel movements. It was getting me down so I was put on anti-depressants and an endoscopy booked. It will be 3 months waiting when I have that appointment in 2. weeks time. 
 

During this time my symptoms have got worse. I’m in agony and they’ve put my on a higher dose of PPI for stomach ulcer. I cut out gluten and lactose and started to feel marked improvement. However, I read that you need to be eating gluten for it to show up in biopsies. So yesterday I reintroduced a small amount of gluten. 4 hours later I was writhing in agony, nauseous, back pain (I’ve been told this is referred pain from the ulcer) and shaking/sweating. I have no appetite at the moment but eat small amounts as empty stomach makes the pain worse. 
 

I guess it’s just the thought that eating gluten intentionally and having this pain for the next two weeks to get a result is terrifying me. I have two young children to care for and I feel like I’m knowingly eating something that’s going to hurt me. Is it a case of push through for the next 2 weeks? I have to come off the omeprazole 10 days before the endoscopy. So I feel this and trying to make myself eat gluten is going to be awful/ cause myself more damage to my already fragile stomach. Sorry for the looooong post, I just feel very alone with this and GP not concerned as I have this appointment upcoming. 

Thank you, K

[cristiana]

Hi K

Welcome to the forum, but I am so sorry you are going through this.  

It sounds a good thing you are going to have an endoscopy. 

However, a question:  has your GP ordered any specific blood tests  for Coeliac disease yet?  If you have them, is there any chance you could share the results here with the lab ranges too, so we can take a look?

Specifically:

Total immunoglobulin A (IgA)

IgA Tissue transglutaminase antibody (shortened to tTG)

Thanks,

Cristiana

 

[trents]

Ditto to what Cristiana asked about the blood antibody testing. Normally, that is done before an endoscopy/biopsy as the first step of celiac diagnosis. If the antibody tests throws some positives, then they move on to the endoscopy/biopsy of the small bowel villous lining. Has antibody testing been done?

You also have the option of skipping the endoscopy/biopsy and just conclude for yourself that you must avoid gluten. Everything points to you having either celiac disease or NCGS (Non Celiac Gluten Sensitivity). Either way, you need to scrupulously avoid gluten. But not having an official diagnosis of celiac disease would not entitle you to the tax breaks/stipends that the government supplies if you live in the UK for buying gluten free foods.

[Scott Adams]

I would only add that if you react that strongly to gluten, then you already have your answer. What's the point of doing the testing?

I'm not one to steer people against their doctor's advice lightly, but to be the devil's advocate let's just say that you eat a lot of gluten for two weeks before your endoscopy, but your tests are negative. Would you continue eating gluten?

[knitty kitty]

@KL443,

Sorry to hear you are feeling so poorly.  

I was not able to take Omeprazole because it made my stomach and digestive tract hurt worse.  There is scientific research that shows that proton pump inhibitors like omeprazole and antidepressants cause continuing inflammation and damage in the digestive tract.  

You may try discontinuing the Omeprazole now.  Since your doctor told you to stop taking it before your appointment anyway, you could try stopping it now.

When you do eat gluten, don't eat it on an empty stomach.  Eat some meat and cooked veggies first.  The fiber in veggies helps move things along.  

Continue to avoid dairy.

Choose low sugar, no yeast gluten foods, like quick breads or cake rather than chewy yeast breads.  Different types of wheat contain different amounts of gluten.  There's more gluten in chewy breads like pizza crust and cinnamon rolls (shaped yeast breads) than in cake and soft cookies.  

Don't overdo on the gluten consumption.  A minimum of about two slices of bread is necessary prior to your endoscopy.  

"You will need to eat a three to 10 grams of gluten per day, and two grams is roughly equivalent to a slice of bread."

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

 

Try drinking some Oolong tea after eating and when your stomach hurts.  Oolong tea contains a natural amino acid, L-Theanine, that helps calm inflammation and relax the brain. 

You're not alone.  Hang in there if you can.  Do ask for testing of blood antibody levels before going off the gluten challenge. (Total IgA, tTg IgA, DGP IgA and IgG, EMA.)

I understand how difficult it is.  I got terribly ill and couldn't complete the gluten challenge.  My diabetes and anemia made my antibody tests false negatives, so I asked for DNA testing.  My genetic test showed I carry two Celiac genes (but all you need is one).  

Remember that Celiac Disease is inherited, so your children need to be tested, too, if they are showing any symptoms.  Your diagnosis can help prevent their diagnosis process taking so long.  

Keep us posted on your progress!  We are all cheering for you here!

[cristiana]

5 hours ago, trents said:

 

You also have the option of skipping the endoscopy/biopsy and just conclude for yourself that you must avoid gluten. Everything points to you having either celiac disease or NCGS (Non Celiac Gluten Sensitivity). Either way, you need to scrupulously avoid gluten. But not having an official diagnosis of celiac disease would not entitle you to the tax breaks/stipends that the government supplies if you live in the UK for buying gluten free foods.

Yes, if anyone in the UK is reading this, if you are diagnosed with coeliac disease as a rule you will be entitled, under the NHS with the following:

• a dietician 
• an annual review, including blood tests, with a gastroenterologist who checks you are coping with the diet OK and for any health complications
• DEXA bone scans, to check you are not suffering from osteopenia or osteoporosis
• an entitlement to prescriptions for certain gluten-free staples (such as bread)
• extra vaccination coverage, as deemed necessary

It is good to be aware of this.   

 

[I.M.Celiac]

On 5/8/2023 at 5:32 PM, cristiana said:

Yes, if anyone in the UK is reading this, if you are diagnosed with coeliac disease as a rule you will be entitled, under the NHS with the following:

• a dietician 
• an annual review, including blood tests, with a gastroenterologist who checks you are coping with the diet OK and for any health complications
• DEXA bone scans, to check you are not suffering from osteopenia or osteoporosis
• an entitlement to prescriptions for certain gluten-free staples (such as bread)
• extra vaccination coverage, as deemed necessary

It is good to be aware of this.   

 

Wow, if anyone in the USA is reading what the UK does for Celiac people, should we regret that whole American Revolution thing? And the War of 1812?

UK, will you take us back?

If we have healthcare, many Americans will be bankrupted by healthcare bills. And getting diagnosed is thousands for dollars for an endoscopy. That's why many Americans will never know their true affliction.

[trents]

1 hour ago, I.M.Celiac said:

Wow, if anyone in the USA is reading what the UK does for Celiac people, should we regret that whole American Revolution thing? And the War of 1812?

UK, will you take us back?

If we have healthcare, many Americans will be bankrupted by healthcare bills. And getting diagnosed is thousands for dollars for an endoscopy. That's why many Americans will never know their true affliction.

But you are missing all the things the UK health system falls short in compared to the USA. For one thing, the UK health system is less flexible than what we have in the USA. Physicians in the UK must follow strictly prescribed protocols in the diagnosing and testing. For another, the wait times for referrals to specialists in the UK is typically considerably longer than it is in the USA. It's not as good as it used to be here in the USA in terms of those things but I'm not ready to jump on the total social medicine ship yet. But we seem to be headed that way here.

[I.M.Celiac]

I am not missing anything.

My highly-overpaid American NYC doctor missed my first diagnosis via endoscopy.

I asked that he test me again. After the second endoscopy, he discovered I had a thing called Celiac.

I had great insurance but I paid thousands of dollars in network to get a straight answer. Less-pushy Americans would never have gotten diagnosed nor could they have afforded it.

I have buried friends who needed adequate healthcare. Others have gone bankrupt due to medical costs. Americans are being fleeced by anything medical. It's embarrassing and deadly.

Also, we have "socialized" medicine in the USA called Medicare. It has kept Americans over 65 alive for decades. Somehow no one calls keeping our grandparents alive a "Socialist Plot".

Good luck.

 

 

 

[trents]

29 minutes ago, I.M.Celiac said:

I am not missing anything.

My highly-overpaid American NYC doctor missed my first diagnosis via endoscopy.

I asked that he test me again. After the second endoscopy, he discovered I had a thing called Celiac.

I had great insurance but I paid thousands of dollars in network to get a straight answer. Less-pushy Americans would never have gotten diagnosed nor could they have afforded it.

I have buried friends who needed adequate healthcare. Others have gone bankrupt due to medical costs. Americans are being fleeced by anything medical. It's embarrassing and deadly.

Also, we have "socialized" medicine in the USA called Medicare. It has kept Americans over 65 alive for decades. Somehow no one calls keeping our grandparents alive a "Socialist Plot".

Good luck.

 

 

 

Having participated in this forum for years, I can tell you that Brits typically are frustrated with the inflexibility and sluggishness of their healthcare system.

Some aspects of our USA healthcare is essentially socialized and we are headed more and more in that direction. But now it is "socialized medicine light". There are pros and cons for each system and which is best will often depend on your situation in life, age, employment history, etc.

Edited May 10, 2023 by trents

[cristiana]

@I.M.Celiac   Reading what you write, it reminds me I ought to be much more grateful for the care we receive through the NHS.  Struggling to cope with the increasing health issues of a growing and an ageing population and chronic underfunding spanning decades, and we have had several NHS strikes recently, it is all too easy to focus on what it doesn't deliver.

People tend to go private if they have the money, and think it will lead to speedier diagnosis/treatment.  Yet I have just had experience of the private system and it hasn't been ideal - in fact, I think the treatment may well have been better had I gone with my local NHS hospital which for my particularly problem turned out to offer speedy efficient treatment.  Local hospital care varies greatly.  In some areas the NHS excels, and is not so good in others, and maybe I chose to back the wrong horse this time!

Anyway -  I think @trents is right - there are pros and cons for each system.  I guess at least I live in a time where we realise that gluten is an issue, because one hundred years ago they wouldn't have even known what was wrong with me.  One reads in Georgian and Victorian novels of how someone wasted away because of a broken heart, etc, etc.  When I was really ill it was during a time of great stress and I might have ended up that way. 

Edited May 10, 2023 by cristiana

[Havnsumfn]

I wish, my mother, grandmother, nephew, brother and a couple uncles could have had testing. I was confirmed with 2 genes, high risk. Family history, gluten rash, and my symptoms were enough for my gastroenterologist to confirm. The lab also stated no one with as many genes and alleles, ever had a negative biopsy. My family members had severe gluten reactions. Doing the challenge would end up in hospitalizations. Only my nephew is now still alive, he and I refuse to go through the gluten challenge. GI bleeds are common in my family, and usually what leads to early death. My mother struggled, each time she was hospitalized, she would get worse when the staff would forget to continue her gluten-free diet orders or ensure the medications or contrast dyes used on her were gluten free. This was an ongoing problem, without her having a diagnosis, and new doctors never believing she should be gluten free. She would get edema needing O2 and even Bipap. She suffered ARDS, resulting from fluid overload anytime she had gluten. I was always assumed by doctors to have pneumonia, morbid obesity, severe asthma attacks, and was a smoker, until I was diagnosed, and my symptoms abated. I've never smoked in my life. We each would lose ~13lbs of fluid, or edema, within a couple of days of eliminating gluten. Mom lost another 67lbs, on the second week, and was off oxygen. After 6 months gluten free, she was discharged from hospice care. 

She suffered a kidney injury after getting contrast dye, and we still don't know if it was that or her getting covid at the same time. She passed from anemia, and suspected gi bleeding. Grandmother had ulcer and died from bleed while in ICU. My brother never made it to the ER, died in ambulance, after eating pasta at home resulting in vomiting and a bleed. One uncle died after vomiting blood at home, and not able to call for help. Other uncle died of pulmonary fibrosis, however, had all the same symptoms as the rest of us. My nephew was near death at 17 years of age, having bleeds and loss of 160lbs in 3 months with loose stools and not able to eat enough. I was able to find an autoimmune disease that matched our symptoms, called Hamman-Rich syndrome which results in lung damage. My family members also suffer rheumatoid arthritis, Hashimoto's, Sjogren's, diabetes, osteoporosis, ulcers, acid reflux and GERD, anxiety disorders. Learning about celiac disease, and encouraging my family members to trial the diet, has greatly improved outcomes for us, and in my case, no more asthma and allergies. My bleeds did stop, until I get exposed to covid. I have one other brother, who has daily seizures, and been struggling with bone fractures, infections and loss of all his teeth. He told me years ago, he was scoped (EGD), and told he was celiac. He and his child, 11 years old, have frequent hospitalizations with pancreatitis. His son gets stents few times a year. He adamantly refuses to believe he has celiac disease, as he doesn't have gastrointestinal pain, or any abnormal stools. He is barely 120bs, last I saw him. I fear his death is next in our family, he is in his 40s. We lost the other brother just after his 40th birthday. 

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Edited July 1, 2023 by Havnsumfn
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