Please could I have some advice

[Moomooandme13]

Hello everyone need some advice. I’m a 51 year old female. Throughout my life I’ve suffered with stomach pain and been diagnosed with IBS in the past but not had a flare up for years. Also have gallbladder issues up to 12 months ago. I don’t suffer with heartburn, acid or indigestion either. Please bear with me, this will sound all over the place but late yesterday I had a gastrocpy with biopsy taken and still feel wired from all the drugs. Started being very poorly 4 weeks ago. Severe upper abdominal pain. Feels like sand in my upper stomach or grit? No indigestion or acid. Sat in A&E 12 hours. Had MRI scan which showed polyps in gallbladder. Surgeon wants to remove it but wanted more investigations done because this pain in my solar plexus which is severe and excruciating and constant isn’t typical gallbladder pain which comes and goes, this pain is always there. He mentioned an ulcer? I had a CT scan everything looks normal. Still in pain had to wait 2 more weeks for gastroscopy which I had 4pm yesterday. Read up on symptoms and h pylori could be the cause but I bought 2 home test kits both were negative. Anyway after gastroscopy a number of biopsy taken which I have to wait for results. No ulcer found but small intestine inflamed. They said I’m being tested for celiac with biopsy? Im in constant pain I now weigh 7 stone I’ve lost so much weight. Weird thing is, I’ve been surviving on bits of dry toast (wheat and gluten). Is that why I’m getting worse not better? I’ve read up on celiac and I swear I have so many symptoms. It’s just over a week until Christmas, I’m in pain I look skeletal and I’m suffering. Also I suffer with bouts of constipation and dhiorea (can’t spell it). When I had ct scan 2 weeks ago I was impacted and given laxatives. Now I’ve got watery poop that’s a yellow colour and smells rancid. I have to rule out h pylori with a test she also said but I don’t know when that will be. Please could someone give me some advice. Should I withhold from eating gluten? Im at my wits end and just want to get better and get rid of this awful pain. Also my upper stomach grinds very loud and pops which causes more pain. Please help would really appreciate any advice. Much love and thank you.

 

[trents]

Welcome to the forum, Moomooandme13!

There was a question mark at the end of "They said you're being tested for celiac with biopsy?" By that do you mean you are not sure of what they said? Do you l know for sure the biopsy they did was for the purpose of checking for celiac disease?

Normally, the first step of celiac diagnosis is a blood draw to check for serum antibodies produced by celiac disease. The endoscopy with biopsy of the small bowel lining usually is the second stage of testing. However, there are times when that normal diagnostic order is not followed and they start with the endoscopy/biopsy which is considered the diagnostic gold standard. This might be the case especially if they were already doing the endoscopy for other reasons? You sound a little uncertain about the reason they were doing the endoscopy/biopsy.

If all testing for celiac disease is now complete, I certainly would encourage you to ditch gluten and trial the gluten free diet. However, if other testing for celiac disease is in the works, hold off on that or you will invalidate the tests.

Celiac Disease is an autoimmune disorder that triggers inflammation of the villi that line the small bowel when gluten is ingested. Over time, this inflammation wears down the villi. This area of the digestive track is where the nutrition from our food is absorbed so when the villi get worn down it can severely impair the ability to absorb nutrition from our food, cause diarrhea, gas, bloating, pain and weight loss .  .  . and a host of other medical problems, many of which are connected with malnutrition.

[Moomooandme13]

Hiya and thank you so much for your reply. The reason I had gastroscopy was due to severe upper abdominal pain and weight loss. I’ve had CT scan and ultrasound scan. Surgeon wanted to rule out ulcer, that’s why I had gastroscopy plus they are trying to rule everything out. On the gastroscopy report it says a number of biopsies have been taken. There were some inflammation on my small bowel but no ulcers or cancer. They took biopsies to test for coeliac disease. Also she wanted me to have a h pylori test at my GP. Does coeliac disease cause this much pain? I’ve been in constant pain now for 5 weeks. I really can’t take anymore it’s awful.

 

 

Also when I eat the pain is worse but I’m only eating dry toast, crackers etc

[trents]

Celiac disease certainly can cause pain but may not be the direct cause of the pain you experience. But the fact is, other kinds of painful abdominal and intestinal maladies such as H.Pylori, IBS, Crohns, and SIBO (Small Intestinal Bacterial Overgrowth) are more commonly found in the celiac population than in the general population.

When do here back from the doctor with regard to the celiac biopsy results?

Edited December 14, 2022 by trents

[Moomooandme13]

She said about a week to get test results. Do celiacs have pain in solar plexus? Sorry for a million questions I just want to get to the bottom of this. I have actually done 2 h pylori home tests which were both negative. I have no inflammation in my esophogus or ulcers, just my small intestine is inflamed but the pain is in upper abdominal solar plexus area? Can celiac disease just come on suddenly like this?

[Moomooandme13]

Plus when I eat my upper abdomen makes the loudest of noises. Grumbling, popping and grinding. Thing what concerns me is I’m surviving on bread, crackers which all contain wheat so maybe that’s why I’m not getting any better If the celiac test comes back positive and making myself worse 

[trents]

I do not think that celiac disease would cause pain in the solar plexis or upper abdomen area. If you knew for certain the physician did not want to order in celiac antibody tests I would advise you to ditch the toast and crackers immediately. Why is it that you are only eating toast and crackers? Do other foods cause problems?

[Moomooandme13]

Yes just eating tiny amounts because eating food makes the pain so much worse. I want to thank you for replying to me I really appreciate it a lot.

The doctor not ordered anymore tests regarding celiac so I’ve just got to wait for the biopsy result.

[trents]

You need to get some protein in your diet. All you are getting now is a small amount of carbohydrate.

[Moomooandme13]

I will try eat some but I’m totally off my food.

[trents]

Please post back as soon as you get your biopsy results. I am concerned about your health and you cannot continue as you are.

[Wheatwacked]

11 hours ago, Moomooandme13 said:

surviving on bits of dry toast (wheat and gluten)

The theory is that the dry toast soaks up the acid and gives you carbs for energy. A long held mistake. Mine was saltine crackers with butter. My wife chose English muffins.  Karen Carpenter was crackers and cheese, as I remember. Elvis was peanut butter sandwiches. Trouble is that if it is Celiac you are adding to the inflamation. If it is H. Pylori they love carbohydrates. The stomach acid kills them but we take meds or over the counter to neutralize the acid allowing the gut bacteria to escape into the stomach and flourish. There are hundreds of symptoms that have been connected to gluten sensitivity. 300 Facts You Didn’t Know About Celiac Disease!

Gall bladder surgery in the US is one of the most performed procedures in the US. Choline deficiency is a major contributor because we need it to make bile and only 10% of those eating the Western diet get enough. 

Choline, SIBO, and Pregnancy: What’s the Deal?r.com/choline-sibo-and-pregnancy-whats-the-deal/

11 hours ago, Moomooandme13 said:

Should I withhold from eating gluten? Im at my wits end and just want to get better

Starting a gluten free diet will skew the results of future testing so you will need to eat it for several weeks before further testing.

When I got really anorexic even after years of GFD I used Dr Haas's diet. Now I only eat from the Fasano Diet list. Links below well worth reading. That and a ton of vitamins. Do not fear overdosing on vitamins. Celiac disease causes malabsorption and even if non Celiac Gluten sensitivity your diet choices and the poor nutrition inherent in the western diet will cause . Yes, even those making "healthy choices".  It's what you don't eat that will kill you. Vitamin D and the B's, choline are front and center. Potassium is a world wide health concern. There are around 20 vitamins and minerals the Celiac sufferer are at high risk of deficiency. The Recommended Daily allowences are the MINIMUM needed. For recovery you need more than a healthy person. Look to the RDA Upper Safe Limit as a guide. 

THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE "She finally accepted a banana, with the result that other food was taken in a more or less normal amount within forty-eight hours. There was a complete relapse when the banana was withheld, and food was taken normally only with bananas."

Fasano list Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED) "Response rate of the GCED was 82%, with 14 of the 17 compliant patients responding to the diet. "

 

 

[Moomooandme13]

13 hours ago, trents said:

Please post back as soon as you get your biopsy results. I am concerned about your health and you cannot continue as you are.

Oh yes I will definitely let you know as soon as I do.

[Moomooandme13]

12 hours ago, Wheatwacked said:

The theory is that the dry toast soaks up the acid and gives you carbs for energy. A long held mistake. Mine was saltine crackers with butter. My wife chose English muffins.  Karen Carpenter was crackers and cheese, as I remember. Elvis was peanut butter sandwiches. Trouble is that if it is Celiac you are adding to the inflamation. If it is H. Pylori they love carbohydrates. The stomach acid kills them but we take meds or over the counter to neutralize the acid allowing the gut bacteria to escape into the stomach and flourish. There are hundreds of symptoms that have been connected to gluten sensitivity. 300 Facts You Didn’t Know About Celiac Disease!

Gall bladder surgery in the US is one of the most performed procedures in the US. Choline deficiency is a major contributor because we need it to make bile and only 10% of those eating the Western diet get enough. 

Choline, SIBO, and Pregnancy: What’s the Deal?r.com/choline-sibo-and-pregnancy-whats-the-deal/

Starting a gluten free diet will skew the results of future testing so you will need to eat it for several weeks before further testing.

When I got really anorexic even after years of GFD I used Dr Haas's diet. Now I only eat from the Fasano Diet list. Links below well worth reading. That and a ton of vitamins. Do not fear overdosing on vitamins. Celiac disease causes malabsorption and even if non Celiac Gluten sensitivity your diet choices and the poor nutrition inherent in the western diet will cause . Yes, even those making "healthy choices".  It's what you don't eat that will kill you. Vitamin D and the B's, choline are front and center. Potassium is a world wide health concern. There are around 20 vitamins and minerals the Celiac sufferer are at high risk of deficiency. The Recommended Daily allowences are the MINIMUM needed. For recovery you need more than a healthy person. Look to the RDA Upper Safe Limit as a guide. 

THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE "She finally accepted a banana, with the result that other food was taken in a more or less normal amount within forty-eight hours. There was a complete relapse when the banana was withheld, and food was taken normally only with bananas."

Fasano list Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED) "Response rate of the GCED was 82%, with 14 of the 17 compliant patients responding to the diet. "

 

 

Thank you for your reply. I must also add that since I began with this pain I was prescribed lansoprazole. 3 weeks later pain getting worse so GP switched me to pentaprozole, 2 weeks later no difference so I don’t think PPI are making a difference to what I have. The only reason I’m eating dry bread and crackers is because of the pain when I eat anything. I’ve had the biopsy to test for celiac so from now on I’m going to start a gluten free diet. I’m so skinny it’s scaring my Hubbie and my parents. I’ve always been tiny, very petite but I look amaciated now. Not a good look for a 51 year old woman. I hate bananas but I’m going to start eating them. Also I don’t feel like I have indigestion or acid reflux. The gastroscopy didn’t show any inflammation in the area where GERD occurs so that’s not what I’m suffering with. Also the H Pylori theory, it’s me that’s raised concerns regarding that, not the GP. It’s really weird but looking back on my life I’ve always been very healthy and if I ever did eat fast food or junk food it would make me feel very ill. I’ve never been a big bread eater either. I just hope when I stop eating gluten my symptoms will start to improve. Again thank you for your reply it means a lot to me. Sammy 😊

[Moomooandme13]

14 hours ago, trents said:

Please post back as soon as you get your biopsy results. I am concerned about your health and you cannot continue as you are.

 

10 minutes ago, Moomooandme13 said:

Thank you for your reply. I must also add that since I began with this pain I was prescribed lansoprazole. 3 weeks later pain getting worse so GP switched me to pentaprozole, 2 weeks later no difference so I don’t think PPI are making a difference to what I have. The only reason I’m eating dry bread and crackers is because of the pain when I eat anything. I’ve had the biopsy to test for celiac so from now on I’m going to start a gluten free diet. I’m so skinny it’s scaring my Hubbie and my parents. I’ve always been tiny, very petite but I look amaciated now. Not a good look for a 51 year old woman. I hate bananas but I’m going to start eating them. Also I don’t feel like I have indigestion or acid reflux. The gastroscopy didn’t show any inflammation in the area where GERD occurs so that’s not what I’m suffering with. Also the H Pylori theory, it’s me that’s raised concerns regarding that, not the GP. It’s really weird but looking back on my life I’ve always been very healthy and if I ever did eat fast food or junk food it would make me feel very ill. I’ve never been a big bread eater either. I just hope when I stop eating gluten my symptoms will start to improve. Again thank you for your reply it means a lot to me. Sammy 😊

Also another thing I’ve just remembered is I’m not a huge carb eater, like I mentioned earlier I’ve never eaten much bread in my lifetime and thinking about my diet now if I overloaded on carbs I would feel sick, sluggish and very tired. Strange.

[trents]

You have probably developed vitamin and mineral deficiencies which you would do well to address with some high potency gluten free supplements. B12, B-complex, D3, Magnesium and Zinc would probably be in order. Do you have Costco where you live?

[knitty kitty]

@Moomooandme13,

Hi!  I'm sorry you're feeling so poorly now.  

I developed thiamine deficiency before my diagnosis.  Symptoms of thiamine deficiency include unintentional weight loss, loss of appetite, abdominal pain, constipation and diarrhea.  I followed Dr. Lonsdale's high dose Thiamine supplementation for correcting thiamine deficiency.  I had improved health within hours.  

Since Thiamine Vitamin B 1 is safe and nontoxic, it may be beneficial to talk to your doctor about giving you an IV containing Thiamine and looking for health improvement.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

[DebJ14]

That sounds very similar to my son's pain.  However, he has been on a gluten free diet since 2007, so we know it is not that.  His doctor diagnosed gastritis and put him on Prilosec.  That just made things worse. This all started with a bout of food poisoning from a Mexican restaurant. 

After researching on our own and after speaking with our nutritionist, we seem to have hit on a regime that gives him relief.  Every morning he takes Mastic Gum, probiotics, and just before eating takes Zinc Carnosine, which strengthens the mucosal lining of the gut and Thorne GI Encap, which is deglycrrhizinated licorice, marshmallow, slippery elm and aloe vera.  He also is sticking to a strict diet of rice or sweet potato, chicken breast and cooked cabbage, which he eats mid afternoon. 

The difference was noticable within 2 days.  No more nights prowling around the house in pain. No more gas and bloating,  He will follow this regime for a few weeks and then slowly add back food items, one at a time and he will shortly add a second, small meal. 

His pain was in the solar plexus and the center of his upper abdomen.  

 

[Moomooandme13]

Hi sorry for late reply and thank you to everyone for messaging me. Still very poorly unfortunately. There is a delay on biopsy results and my surgeon is now on annual leave for Christmas so I won’t get my results until January. I’ve cut out gluten, but made some silly mistakes eating food containing gluten when I would never have thought would contain it. From now on will be very strict. Only eating small amounts of food. Also been given tramodol for the pain because morphine didn’t take the pain away. I’ve been getting pain down my right shoulder and top of right arm, is that normal? Also due to tramodol I’m very constipated so having to take laxatives which I’m sure are irritating my stomach making the pain worse. I promise I’m not ignoring any of you and I will let you know the results of my biopsy. Merry Christmas everyone much love sent your way. Sammy xx

[trents]

This might help you avoid those hidden gluten mistakes:

 

[Scott Adams]

5 hours ago, Moomooandme13 said:

Hi sorry for late reply and thank you to everyone for messaging me. Still very poorly unfortunately. There is a delay on biopsy results and my surgeon is now on annual leave for Christmas so I won’t get my results until January. I’ve cut out gluten, but made some silly mistakes eating food containing gluten when I would never have thought would contain it. From now on will be very strict. Only eating small amounts of food. Also been given tramodol for the pain because morphine didn’t take the pain away. I’ve been getting pain down my right shoulder and top of right arm, is that normal? Also due to tramodol I’m very constipated so having to take laxatives which I’m sure are irritating my stomach making the pain worse. I promise I’m not ignoring any of you and I will let you know the results of my biopsy. Merry Christmas everyone much love sent your way. Sammy xx

I'm not sure if taking tramodol or morphine is a good idea, especially long-term, as opiates are well-known to cause digestive issues like severe constipation. Clearly going gluten-free and tapering off these drugs would be a good idea, but talk to your doctor about this.

[Moomooandme13]

Hello everyone and hope you had a good Christmas. I'm still very poorly losing weight and in a he'll of a lot of pain. Christmas has been spent in bed taking oramorph. I'm really skinny now. I. Still waiting for my results but I'm 100% positive this what I'm suffering with is my gallbladder. Hopefully the surgeon phones me next week. Will keep you all updated. Sammy x

[knitty kitty]

@Moomooandme13,

I've had Gastrointestinal Beriberi.

Gastrointestinal Beriberi causes the same symptoms you've described. 

Gastrointestinal Beriberi is a manifestation of Thiamine deficiency.  The gallbladder gets sludgy and doesn't work well, the stomach doesn't produce enough acid (often misdiagnosed as too much acid hence your doctor prescribed the PPI's), constipation alternating with diarrhea, and unintentional weight loss.  And all the pain.  Muscles need Thiamine, too.

Doctors don't recognize Thiamine deficiency and Gastrointestinal Beriberi.  

Thiamine is Vitamin B1.  It's an essential nutrient that our bodies cannot make and we must get Thiamine from food or supplementation. 

Thiamine cannot be stored for long.  You can become deficient and exhibit deficiency symptoms  in as little as three days.  Since your symptoms have been going on for longer, your thiamine stores are probably depleted to a serious point.  

Since Thiamine is nontoxic, safe and harmless, you would be wise to ask your doctor for an IV of Thiamine Hydrochloride in a medical setting.  You will need to be monitored for Refeeding Syndrome.  Glucose needs to be given with Thiamine to prevent this hypoglycemic reaction.  

My doctors were clueless and sent me home.  They said I was making stuff up.  I knew stuff from university, so I started taking over the counter Thiamine Hydrochloride tablets.  I got better.  I got much better.  

Thiamine Hydrochloride is great, but there are other forms of Thiamine that work wonderfully.  Benfotiamine helps heal the intestines.  Tetrahydrofurfuryl disulfide (TTFD) (Allithiamine and Thiamax) helps with neurological problems.  All available over the counter.  

If I'm right, yeah, you get better.  If I'm wrong, have a good laugh.  

Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/?report=reader

"Thiamine deficiency classically presents as Wernicke’s encephalopathy (WE), dry beriberi and wet beriberi.  Gastrointestinal symptoms, such as anorexia, nausea, vomiting and pain in the abdomen, are often described in patients with WE and beriberi.  However, a few patients may have predominantly gastrointestinal manifestation. Donnino coined ‘Gastrointestinal beriberi’ for such patients.  Surprisingly, nausea and vomiting are also the risk factors for the development of WE. Herein, we report two cases of thiamine deficiency who predominantly had gastrointestinal symptoms.

"Case 2: a 21-year-old woman developed drug-induced hepatitis and gastritis. Associated nausea, vomiting and abdominal pain progressively increased over the weeks. The patient responded only to intravenous thiamine administration."

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Hope this helps!

[Moomooandme13]

I will try anything absolutely anything!!!! Never been so poorly in my entire life. I'm usually a healthy 51 year old. I do have polyps on my gallbladder. Thank you for your reply 

[knitty kitty]

There's some evidence that colonic polyps are produced in Thiamine deficiency. 

Haven't found any studies done yet on gallbladder polyps.  

Edited December 28, 2022 by knitty kitty
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