H pylori

[Patricia Hubbard]

Hi, I’m new to the site and 34. I was hoping I could get some advice. I have recently visited my GI again because I ended up in the ER for severe back and stomach pain and severe rectal bleeding. A past colonoscopy revealed massive internal hemorrhoids.  While there I was sent for blood tests and stool test. I am waiting still on my celiac blood test results but have a confirmed blood test result for H Pylori. Is it common to have these two together? I have been on meds several times for severe nausea, I currently weight 100 pds, I have unintentional weight loss over the past several years. I’ve struggled my whole life to maintain weigh but this is the worst it’s been with a loss of 15 pds in the last year due to not being able to eat and the discomfort that comes with it. I also get these itchy area on my thighs/ knee areas that gets really read from intense scratching and then bruises, this has been for about 2 yrs. Should I go ahead and schedule my endoscopy even though I haven’t got my celiac blood test back yet?

[trents]

Yes, H. Pylori and other gut infections such as SIBO are more common in the celiac population. If your insurance allows you to schedule an endoscopy/biopsy without referral, go ahead and do it. You can always cancel the appointment if you or your physician decide it isn't needed. But most likely, if your blood antibody tests are positive, you will be recommended for an endoscopy/biopsy. Scheduling it now would cut down the wait period and your suffering time.

Edited December 2, 2022 by trents

[Patricia Hubbard]

3 hours ago, trents said:

Yes, H. Pylori and other gut infections such as SIBO are more common in the celiac population. If your insurance allows you to schedule an endoscopy/biopsy without referral, go ahead and do it. You can always cancel the appointment if you or your physician decide it isn't needed. But most likely, if your blood antibody tests are positive, you will be recommended for an endoscopy/biopsy. Scheduling it now would cut down the wait period and your suffering time.

Thank you, I do have a referral but they wanted me to wait to schedule until all my results came back. I went ahead and scheduled a consult for next week. I’m feeling very overwhelmed and freaked cause I have just learned I have a brother who is worse off than me and refuses to see a doc even though he been told he needs to be admitted because of possible organ failure. We have all the same symptoms.

[trents]

Do the itchy areas on your knees and thighs ever take the form of little pimples with blisters? You may know this already but there is a skin condition known as dermatitis herpetiformis (DH) that some celaics develop and it is definitive for celiac disease. There is no other known cause.

Edited December 2, 2022 by trents

[Scott Adams]

I also had H Pylori at the time of my diagnosis, and it was likely caused by the severe gut damage that I had at that time, although it's not exactly clear which came first, the H Pylori or celiac disease.

[Patricia Hubbard]

39 minutes ago, trents said:

Do the itchy areas on your knees and thighs ever take the form of little pimples with blisters? You may know this already but there is a skin condition known as dermatitis herpetiformis (DH) that some celaics develop and it is definitive for celiac disease. There is no other known cause.

They do get bumpy, I honestly thought I did this because I just had dry itchy skin. I am trying to educate myself on celiac disease. The rash reminds me a lot of the one known with celiac at least what I’ve seen online. It will come and go. But it’s always the same area on both legs

[Posterboy]

4 hours ago, Scott Adams said:

I also had H Pylori at the time of my diagnosis, and it was likely caused by the severe gut damage that I had at that time, although it's not exactly clear which came first, the H Pylori or celiac disease.

Scott Et Al,

Here is some research that might answer the "Chicken and Egg" issue....

Entitled "Helicobacter pylori infection in patients with celiac disease"

https://pubmed.ncbi.nlm.nih.gov/16780559/

Quoting

"Results: At baseline, 30 patients had H. pylori infection and 50 did not; at follow-up five new (H. Pylori) infections were detected"

This was over a 12 to 18 months timespan.....

Because Low Stomac Acid can be the trigger for H.Pylori the continued Low Stomach acid allowed more H. Pylor infections to occur as time went on...

See this research approx. 20 years ago that "Debunked" the commonly held belief that High Stomach Acid triggers Ulcers...

Entitled "Excessive Growth of Bacteria May Also Be Major Cause of Stomach Ulcers"

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers

going back to the other study on H.Pylor in Celiac disease entitled "Helicobacter pylori infection in patients with celiac disease"

quoting again...

"The higher prevalence of milder duodenal lesions in celiac disease patients with H. pylori infection suggests that lymphocytosis induced by H. pylori gastric infection becomes less obvious as profound inflammatory and structural changes alter the mucosal architecture. This study also provides further support for a pathogenetic relationship between celiac disease and lymphocytic gastritis."

Essentially saying to me....the Low stomach acid triggers the H. Pylori infection.....progressing to NCGS and finally your Celiac disease diagnosis......and in it's (the gastritis) later stages the progressive damage done by being low in stomach over a certain period time says 1 to 2 years progress to a NCGS and/or your Celiac disease diagnosis.

The Biderectional link between IBS, GERD etc and NCGS and/or Celiac disease has recently been established in the lastest research on this topic.....but it will take a few years to incorporate these latest findings into the latest models on Celiac disease.

I hope this is helpful but it is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

[Patricia Hubbard]

10 minutes ago, Posterboy said:

Scott Et Al,

Here is some research that might answer the "Chicken and Egg" issue....

Entitled "Helicobacter pylori infection in patients with celiac disease"

https://pubmed.ncbi.nlm.nih.gov/16780559/

Quoting

"Results: At baseline, 30 patients had H. pylori infection and 50 did not; at follow-up five new (H. Pylori) infections were detected"

This was over a 12 to 18 months timespan.....

Because Low Stomac Acid can be the trigger for H.Pylori the continued Low Stomach acid allowed more H. Pylor infections to occur as time went on...

See this research approx. 20 years ago that "Debunked" the commonly held belief that High Stomach Acid triggers Ulcers...

Entitled "Excessive Growth of Bacteria May Also Be Major Cause of Stomach Ulcers"

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers

going back to the other study on H.Pylor in Celiac disease entitled "Helicobacter pylori infection in patients with celiac disease"

quoting again...

"The higher prevalence of milder duodenal lesions in celiac disease patients with H. pylori infection suggests that lymphocytosis induced by H. pylori gastric infection becomes less obvious as profound inflammatory and structural changes alter the mucosal architecture. This study also provides further support for a pathogenetic relationship between celiac disease and lymphocytic gastritis."

Essentially saying to me....the Low stomach acid triggers the H. Pylori infection.....progressing to NCGS and finally your Celiac disease diagnosis......and in it's (the gastritis) later stages the progressive damage done by being low in stomach over a certain period time says 1 to 2 years progress to a NCGS and/or your Celiac disease diagnosis.

The Biderectional link between IBS, GERD etc and NCGS and/or Celiac disease has recently been established in the lastest research on this topic.....but it will take a few years to incorporate these latest findings into the latest models on Celiac disease.

I hope this is helpful but it is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

Thank you. It is helpful! I’m trying to understand better. I’ve had stomach issues my whole life, but I’ve lost so much weight I’m fading away, have no energy and barely eat. A lot of my symptoms line up with celiac disease. I’m waiting on my blood test results for it now.

[knitty kitty]

@Patricia Hubbard,

Welcome to the forum.  I'm sorry you're feeling so poorly.

Symptoms you mentioned that caught my attention include nausea, fatigue, unintentional weight loss, loss of appetite.  These are all symptoms I experienced when I had thiamine deficiency prior to my Celiac diagnosis.  

Doctors don't usually think of thiamine deficiency outside of alcoholism, but thiamine deficiency can happen in malabsorption syndromes like Celiac Disease.  Vitamin and mineral deficiencies are quite common in Celiac Disease.  

I suggest you discuss thiamine deficiency with your doctor very soon.  A doctor can give you an IV of Thiamine and monitor you for refeeding syndrome.  

Here's some information you can share...

Hiding in Plain Sight: Modern Thiamine Deficiency

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

And...

https://www.hormonesmatter.com/genetic-thiamine-deficiency-ravaged-my-family/

Keep us posted on your progress!

[Patricia Hubbard]

On 12/2/2022 at 7:51 PM, Patricia Hubbard said:

Thank you. It is helpful! I’m trying to understand better. I’ve had stomach issues my whole life, but I’ve lost so much weight I’m fading away, have no energy and barely eat. A lot of my symptoms line up with celiac disease. I’m waiting on my blood test results for it now.

Thank you, I see a general surgeon tomorrow about a consult for endoscopy and hemorrhoid removal. I will mention it to him, if I get no where I will call my family doctor. I’ve never heard of this but it does explain a lot. I saw neurologist in 2018 and after a lot of testing was diagnosed with fibromyalgia, pain syndrome, and migraines because I had lost the ability to walk properly, lost muscle strength in my legs.i could only stand in position or sit for short periods when the pain kicks in. I also run an average heart rate while sitting around atleast 120. I had explained to her my calf muscles felt like a constant Charlie horse. My fingers and feet tingle numb and hurt.

[Wheatwacked]

I had that. Prednisone helped, saved me really. Before starting a gluten free diet I had to take 30 mg a day, Without prednisone I just lay in bed not moving for 22 hours a day. Even Tramadol did not help. After starting GFD two years later am down to 5 or 10 mg a day depending on activity. Because I started prednisone and was on it long term before GFD I have secondary adrenal insufficiency and will problably need prednisone forever. Had I started GFD and vitamin replenishment first I am sure that would not be the case.

[knitty kitty]

@Patricia Hubbard,

I do hope your doctors will at least try the IV thiamine, if for no other reason than to rule it out. 

Refeeding Syndrome is a concern since you are so emaciated.  In Refeeding Syndrome, electrolytes and minerals may become unbalanced.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

Thiamine is safe and nontoxic even in high amounts.  Thiamine is water soluble and our bodies can easily excrete any excess in urine.  Thiamine needs magnesium and potassium to function properly, so these need to be supplemented as well.Thiamine is known to improve Fibromyalgia and migraines.

https://m.youtube.com/watch?v=R01PRRF3774

And...

https://pubmed.ncbi.nlm.nih.gov/36047917/

Changes in gait --how you walk and stand -- and muscle weakness in the legs are classic symptoms of Thiamine Deficiency. 

The muscle cramps are another symptom.  Thiamine and magnesium can make the Charlie horses go away.

Peripheral neuropathy-- the numb tingling in feet and hands-- are symptoms of thiamine deficiency.

Tachycardia is another symptom of Thiamine deficiency.

Look, I had all these symptoms.  My doctors kept asking if I drank and when I said no, they said I was making stuff up and dismissed me.  My doctors did not recognize Thiamine Deficiency outside of alcoholism.  I went home and dug out my notes from university where I studied to be a microbiologist.  THIAMINE deficiency.  I researched more and found Dr. Lonsdale's recommendations for high dose Thiamine treatment. 

I took high dose Thiamine in the form thiamine hydrochloride and later Benfotiamine and Allithiamine (Thiamine Tetrahydroxyfurfuryl disulfide).  I took over the counter supplements.  I have recovered.  

I do hope one of your doctors will investigate thiamine supplementation.

Keep us posted on your progress.

@Wheatwacked, 

Thiamine deficiency can cause adrenal insufficiency.

[Patricia Hubbard]

4 hours ago, Wheatwacked said:

I had that. Prednisone helped, saved me really. Before starting a gluten free diet I had to take 30 mg a day, Without prednisone I just lay in bed not moving for 22 hours a day. Even Tramadol did not help. After starting GFD two years later am down to 5 or 10 mg a day depending on activity. Because I started prednisone and was on it long term before GFD I have secondary adrenal insufficiency and will problably need prednisone forever. Had I started GFD and vitamin replenishment first I am sure that would not be the case.

When you say you had it, what do you mean? Fibromyalgia?

[Wheatwacked]

2 hours ago, knitty kitty said:

Thiamine deficiency can cause adrenal insufficiency

Very possibly. Now taking 500 mg each of B1, B3, B5, B12 and a B comlex for the rest. I was up to 2000 mg each to start replenishment.

Note that food source B vitamins have unlimited Safe Upper Limit. Niacin: safe upper limit to supplements was set to avoid flushing ; uncomfortable at first but not dangerous. In some research supplementing with folic acid caused a 17% increase in cancer. B6 supplements can cause loss of muscle control, weakness, numbness, heartburn. skin lesions.  I am always surprised to see that B11 is Salicylic Acid. Aspirin is acetlysalicylic acid. Older cultures use willow bark tea to reduce fever. Willow Bark tea was the inspiration for aspirin.

Doctor started me on Glipizide for glucose and Hydraloline for BP. Within a week my morning glucose went up 50 points. Systolic BP went up from 150 to 180 and diastolic from 75 to 85. Side effects were Old Man Shuffle and wobbly legs, forearm tremors, and more sensitive to temperatures below 80 degree F. She accused me of not being compliant because I stopped the first two the day before my appointment. Now on Atenolol/chlorthalidone with Clonidine if it goes over 175/100. Only happened twice in 2 weeks. No side effects from either and they lower my BP to normal. My systolic as much as 40 points. Finally a BP med that works to lower and not just create deblilitating side effects. Sometimes the wrong drug can make things worse. It has taken two weeks to recover muscle tone in my legs. Right knee destablilized. I had a medial meniscus tear 20 years ago and haven't had any trouble until the hydrozoline weakened my knee muscles. It's almost back to normal, but if I had not stopped it it would have crippled me.

1 minute ago, Patricia Hubbard said:

Fibromyalgia?

yes

 

[Patricia Hubbard]

11 hours ago, Wheatwacked said:

Very possibly. Now taking 500 mg each of B1, B3, B5, B12 and a B comlex for the rest. I was up to 2000 mg each to start replenishment.

Note that food source B vitamins have unlimited Safe Upper Limit. Niacin: safe upper limit to supplements was set to avoid flushing ; uncomfortable at first but not dangerous. In some research supplementing with folic acid caused a 17% increase in cancer. B6 supplements can cause loss of muscle control, weakness, numbness, heartburn. skin lesions.  I am always surprised to see that B11 is Salicylic Acid. Aspirin is acetlysalicylic acid. Older cultures use willow bark tea to reduce fever. Willow Bark tea was the inspiration for aspirin.

Doctor started me on Glipizide for glucose and Hydraloline for BP. Within a week my morning glucose went up 50 points. Systolic BP went up from 150 to 180 and diastolic from 75 to 85. Side effects were Old Man Shuffle and wobbly legs, forearm tremors, and more sensitive to temperatures below 80 degree F. She accused me of not being compliant because I stopped the first two the day before my appointment. Now on Atenolol/chlorthalidone with Clonidine if it goes over 175/100. Only happened twice in 2 weeks. No side effects from either and they lower my BP to normal. My systolic as much as 40 points. Finally a BP med that works to lower and not just create deblilitating side effects. Sometimes the wrong drug can make things worse. It has taken two weeks to recover muscle tone in my legs. Right knee destablilized. I had a medial meniscus tear 20 years ago and haven't had any trouble until the hydrozoline weakened my knee muscles. It's almost back to normal, but if I had not stopped it it would have crippled me.

yes

 

Thanks everyone for the info. My Celiac blood test came back today negative. Since something is obviously wrong I am scheduled for an endoscope/colonoscopy in January. They are thinking stomach ulcers or Chrohn’s. Hopefully this will give me answers. Really sorry I wasted your alls time

[Scott Adams]

No time wasted, and keep in mind that there is a condition called non-celiac gluten sensitivity, which ~10x more people have than celiac disease, yet there is no test for this yet. You could still have this, and if so, would need to go gluten-free. So you may want to try a gluten-free diet for a few months to see if it helps with your symptoms.

[CAS7]

As someone who has celiac disease and has had H Pylori and can sympathize. I actually was diagnosed with H Pylori about 10 years after my military service. This is key in my situation due to some of the regions of the world where I was deployed did not have very good sanitation ( food and water). In my case I was given the standard Triple Antibiotic Therapy in conjunction with a PPI ( Prevacid) which eradicated the bug.  

[Patricia Hubbard]

22 hours ago, CAS7 said:

As someone who has celiac disease and has had H Pylori and can sympathize. I actually was diagnosed with H Pylori about 10 years after my military service. This is key in my situation due to some of the regions of the world where I was deployed did not have very good sanitation ( food and water). In my case I was given the standard Triple Antibiotic Therapy in conjunction with a PPI ( Prevacid) which eradicated the bug.  

I’m curious to how long I’ve had it but have no way of knowing. I grew up in the  Appalachian mountains and was constantly in the creek beds and lived in over crowded homes. 22 people at one time. I have also worked in ICF facilities for the last 12 years in severe behavioral disabilities so know I could have gotten at some point then because bowels and blood are a daily occurrence. I’ve had GI symptoms for years and honestly didn’t think much of it til now with such severe symptoms and discomfort. I truly worry about the damage since as of yesterday my brother landed in ICU with severe heart rates and malnutrition. He’s 35, has graves and lupus, our GI issues are very similar

[Scott Adams]

Has your brother been tested for celiac disease, as up to 44% of 1st degree relatives also have it?

[Patricia Hubbard]

31 minutes ago, Scott Adams said:

Has your brother been tested for celiac disease, as up to 44% of 1st degree relatives also have it?

I honestly don’t know, the reason he went to the hospital is I begged for days cause he looks like he’s dying! I’m the only one he will listen to he is a grown man with a childs mind. He should have went along time ago. If you read back I tested negative. Their thinking Crohns or GI ulcers for me which make since for me with the H pylori. It causes ulcers. I told my mom to have him tested for H pylori and celiac since we grew up together. We live 8 hrs apart. Im have an endoscopy/ colonoscopy in January 

[Wheatwacked]

Sugar and carbs feed the bad bacteria like H. Pylori and helps them flourish. Fiber is good for the good bacteria.

[Russ H]

On 12/2/2022 at 6:46 PM, trents said:

Do the itchy areas on your knees and thighs ever take the form of little pimples with blisters? You may know this already but there is a skin condition known as dermatitis herpetiformis (DH) that some celaics develop and it is definitive for celiac disease. There is no other known cause.

I had thickened red and itchy skin on my knees and elbows prior to diagnosis. I never had classical symptoms of dermatitis herpetiformis but I got intensely itchy bumps on my thighs, hips, shoulders and scalp. This completely disappeared over about a year on a strict gluten-free diet.

[knitty kitty]

This article discusses the benefits of vitamins and minerals in H. Pylori....

 

The Effects of Vitamins and Micronutrients on Helicobacter pylori Pathogenicity, Survival, and Eradication: A Crosstalk between Micronutrients and Immune System

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8942682/