Constant pain left upper abdomen - coeliac and lupus

[lupusliving89]

Hi everyone,.

I'm hoping to share my experience and see if anyone has experienced or is experiencing similar issues.

Just over a month ago I was diagnosed with lupus which seemed to come on out of no where.

The flare lasted a week or so and during that time I was hospitalised 3 times, multiple blood tests, X-rays and ultrasounds due to upper left abdomen pain right under my left breast/rib area.

One of the tests they did was HLA-DQB1*03:02 detected.

They've popped a blanket diagnosis of GERD for the upper abdomen pain however the medication for that has not helped after a week of consistent use.

Has anyone experienced anything similar?!

[cristiana]

Hello @lupusliving89

Welcome to the forum!

I am sorry you are experiencing this constant pain.  I do not have lupus, but I am a coeliac, and if I get glutened the place you describe is where I often get pain, sometimes for some days/weeks after a glutening.

I wonder if you could clarify, have you had an endoscopy too, and did they find villous damage?  

I have also been diagnosed with costochondritis which you may wish to look up.  The pain is sometimes nauseating.  Picking up heavy weights but also glutening episodes seems to set it off.  I don't know why the latter - possibly because it causes inflammation, or bloating in that area.

Cristiana

 

 

[trents]

3 hours ago, lupusliving89 said:

Hi everyone,.

I'm hoping to share my experience and see if anyone has experienced or is experiencing similar issues.

Just over a month ago I was diagnosed with lupus which seemed to come on out of no where.

The flare lasted a week or so and during that time I was hospitalised 3 times, multiple blood tests, X-rays and ultrasounds due to upper left abdomen pain right under my left breast/rib area.

One of the tests they did was HLA-DQB1*03:02 detected.

They've popped a blanket diagnosis of GERD for the upper abdomen pain however the medication for that has not helped after a week of consistent use.

Has anyone experienced anything similar?!

Welcome to the forum, lupusliving89!

Have you been tested for celiac disease, either by serum antibody testing or endoscopy/biopsy of the small bowel lining? Celiac disease is an autoimmune disorder and so is lupus. There is a statistical correlation between the two.

Did they put you on a PPI for the GERD? If it doesn't help, drop it. PPIs raise stomach PH and that reduces nutrient absorption. Your food isn't being broken down as well. If you have celiac disease your nutrient absorption is already compromised.

Edited September 27, 2022 by trents

[lupusliving89]

8 hours ago, trents said:

Welcome to the forum, lupusliving89!

Have you been tested for celiac disease, either by serum antibody testing or endoscopy/biopsy of the small bowel lining? Celiac disease is an autoimmune disorder and so is lupus. There is a statistical correlation between the two.

Did they put you on a PPI for the GERD? If it doesn't help, drop it. PPIs raise stomach PH and that reduces nutrient absorption. Your food isn't being broken down as well. If you have celiac disease your nutrient absorption is already compromised.

They haven't done any further testing for celiac, just that one test that says I have the predisposing factor for developing it.

They have put me on Pantoprazole for the GERD which has not helped at all.

Once they diagnosed the lupus they just assumed that the pain is probably from that.

Just at my wits end with the pain really wish I could figure out what's causing it 😕 

[trents]

Maybe you should be tested for celiac disease? Because of the upper right left side upper quadrant abdominal pain it seems like someone should have done an endoscopy by now to actually look at the stomach with a scope. While they are doing that they could take biopsies of you duodenum and duodenum bulb to check for villi damage from celiac disease. Are you comfortable in asking for certain tests or do you find it difficult to advocate for yourself with doctors?

Edited September 28, 2022 by trents

[cristiana]

I agree with @trents.

Just to say, my pain is generally in the upper left quadrant, like yours.  I had an ultrasound once and I showed the radiographer where the pain was - she told me it was my stomach.  I also get gastritis like pain when I consume gluten so that makes sense to me that my pain is there.

Definitely get tested if you can.  This will mean consuming gluten (the equivalent of two slices of normal gluten containing bread) for 6-8 weeks before a coeliac blood test.   

Do  come back to us if you have any queries.

[T burd]

10 hours ago, lupusliving89 said:

They haven't done any further testing for celiac, just that one test that says I have the predisposing factor for developing it.

They have put me on Pantoprazole for the GERD which has not helped at all.

Once they diagnosed the lupus they just assumed that the pain is probably from that.

Just at my wits end with the pain really wish I could figure out what's causing it 😕 

What positive blood tests show you have lupus? High ANA? What else? Did they find any malfunction with other organs like kidney? Liver? thyroid? 
I noticed I react in my lips and mouth if I get gluten CC. I have a slight hiatal hernia and vocal cord damage. Celiacs reaction to gluten starts in saliva. so it can injure any part of digestive tract. I had bad reflux as a teen. 
I wasn’t diagnosed until 38 with celiac, and developed some sort of lupus they think is drug induced because I have anti histone antibodies and they found no other damage than in my joints. 
With lupus your body attacks the old injuries and weakest parts. I had a knee injury a looong time ago. So I flare there. If you have celiac, it is likely lupus can affect your digestive system. Have they ruled out everything? 
look to natural remedies like diet that helps with gerd like dairy free. 

[knitty kitty]

This might be of interest to you...

 

[TheFuzz]

I had years and years of unexplained abdominal pain even after going full gluten free for celiac.  I was recently diagnosed with Rheumatoid Arthritis.  It took awhile for that medication to work, but most of my pains have gone away.  You may just need whatever they gave you for Lupus to start working.

[T burd]

6 hours ago, TheFuzz said:

I had years and years of unexplained abdominal pain even after going full gluten free for celiac.  I was recently diagnosed with Rheumatoid Arthritis.  It took awhile for that medication to work, but most of my pains have gone away.  You may just need whatever they gave you for Lupus to start working.

Right now I’m not on anything for the lupus. I had been on HCQ for 10 months. I’m pretty sure it permanently damaged my heart but only very slightly. I started getting weird heart palpitations while I was on it that didn’t go away after stopping.

my joints started flaring up and have been bad since I got off of it 1.5 years ago. 
 

I have a functional medicine doctor right now thinking that I have Lyme that I contracted as a child, that presents as lupus. so I’m treating with antibiotics for a long time right now to see if that helps. I cannot tell. 
 

what are you on for rheumatoid arthritis? 
I waddle like a duck from the joint pain. I’m only 42, but move like poor health 60.
 

[TheFuzz]

Ya, I'm your age too.  I could hardly walk or hold a cup of coffee.  I'm on HCQ and currently leflunomide(not working great).  I was on methotrexate, but it got toxic for me.

I'm surprised your doctor is being so laid back with treating the lupus if you have symptoms like that.  Mine got me on prednisone right away along with the other stuff to get the joint pain under control.

[Beverage]

My sister has diverticulitis and gets that sort of pain, upper left and sometimes lower left, when it flares up. It has been bad enough to get her into the hospital.

[T burd]

2 hours ago, TheFuzz said:

Ya, I'm your age too.  I could hardly walk or hold a cup of coffee.  I'm on HCQ and currently leflunomide(not working great).  I was on methotrexate, but it got toxic for me.

I'm surprised your doctor is being so laid back with treating the lupus if you have symptoms like that.  Mine got me on prednisone right away along with the other stuff to get the joint pain under control.

I was almost feeling all better after celiac diagnosis at 38. Only slight joint pain compared to now. The HCQ helped while on it, but made it worse after. And the heart flutter means I cannot be on That. If it is lyme and confections the anti parasitic properties could have been why it was working. It isn’t typical lupus. I’m just not totally convinced either way, so I’m experimenting to see if antibiotics helps. Methotrexate gave me some bad reactions immediately. Twitching. I basically can’t be medicated. 

[knitty kitty]

Hi! 

@T burd,

I found this article that says antihistone antibodies are found in Celiac Disease.  Are there different or specific ones for Celiac and Lupus? 

High Frequency of Extractable Nuclear Autoantibodies in Wheat-Related Disorders

https://pubmed.ncbi.nlm.nih.gov/29977112/

 

HCQ, hydroxychloroquine, causes thiamine deficiency by blocking the Thiamine and folate transporters prohibiting thiamine and folate from getting inside the cells.

@TheFuzz, you'll be interested to know that both of your medicines are on this list.  

 

Drug–nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3)

https://academic.oup.com/ajcn/article/111/1/110/5637679

 

Some of the symptoms you mentioned are also symptoms of Thiamine deficiency.  I had the palpitations or tachycardia but doctors couldn't find anything wrong.  I had the "waddle like a duck" change in gait, I had aches in old bone fractures, and more.  See if your symptoms are similar to Thiamine deficiency.

Vitamin B1 Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/books/NBK537204/

 

Here's an article where people had lupus and thiamine deficiency....

Wernicke's encephalopathy mimicking neuropsychiatric symptoms in patients with systemic lupus erythematosus: a report of three cases and literature review

https://pubmed.ncbi.nlm.nih.gov/27416844/

Here's one....

Biochemically and histopathologically comparative review of thiamine’s and thiamine pyrophosphate’s oxidative stress effects generated with methotrexate in rat liver

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3560789/

 

Y'all have been on medication that causes thiamine deficiency.  

You might like to discuss this with your doctors.

P.S.  High dose Thiamine is needed.

Hiding in Plain Sight: Modern Thiamine Deficiency

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

 

Edited October 5, 2022 by knitty kitty
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[T burd]

13 hours ago, knitty kitty said:

Hi! 

@T burd,

I found this article that says antihistone antibodies are found in Celiac Disease.  Are there different or specific ones for Celiac and Lupus? 

High Frequency of Extractable Nuclear Autoantibodies in Wheat-Related Disorders

https://pubmed.ncbi.nlm.nih.gov/29977112/

 

HCQ, hydroxychloroquine, causes thiamine deficiency by blocking the Thiamine and folate transporters prohibiting thiamine and folate from getting inside the cells.

@TheFuzz, you'll be interested to know that both of your medicines are on this list.  

 

Drug–nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3)

https://academic.oup.com/ajcn/article/111/1/110/5637679

 

Some of the symptoms you mentioned are also symptoms of Thiamine deficiency.  I had the palpitations or tachycardia but doctors couldn't find anything wrong.  I had the "waddle like a duck" change in gait, I had aches in old bone fractures, and more.  See if your symptoms are similar to Thiamine deficiency.

Vitamin B1 Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/books/NBK537204/

 

Here's an article where people had lupus and thiamine deficiency....

Wernicke's encephalopathy mimicking neuropsychiatric symptoms in patients with systemic lupus erythematosus: a report of three cases and literature review

https://pubmed.ncbi.nlm.nih.gov/27416844/

Here's one....

Biochemically and histopathologically comparative review of thiamine’s and thiamine pyrophosphate’s oxidative stress effects generated with methotrexate in rat liver

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3560789/

 

Y'all have been on medication that causes thiamine deficiency.  

You might like to discuss this with your doctors.

P.S.  High dose Thiamine is needed.

Hiding in Plain Sight: Modern Thiamine Deficiency

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

 

She did check my thiamine levels this summer and they were in range 97 reference range 66 to 200. 
all things I have positive: 

ANA IgG

ANA by HEp-2 positive dense fine speckled

Abs. CD8-CD57+lymphs was low 54 (ref range 60-360)

lyme disease C6 peptide by ELISA was positive 1.24 (with <.9 as neg.)

anti-cardiolipin IgG positive 27 (with <20 neg.)

 

but all my blot tests were negative except for band 41. specific to borrelia. So I can’t get a CDC confirmed lyme diagnosis, but the testing accuracy is even worse than celiac. I haven’t been bitten in 23 years. But I had about 10 tick bites in my youth starting with age 4. 
 

all the things I have positive are linked to Lyme. Lyme can cause autoimmune issues. 

anti-cardiolipin https://pubmed.ncbi.nlm.nih.gov/35289310/

 

[knitty kitty]

A person can have "normal" blood levels of Thiamine, but have a functional  deficiency because the Thiamine is not getting into the cells. 

The transporters that bring thiamine into the cells have been blocked and turned off by those medications.

The best way to clear the transporters is High Dose Thiamine. 

High Dose Thiamine provides a means of getting thiamine into the cells (thiamine moves from area of high concentration -outside cells- to an area of lower concentration - inside cells-) and turning the transporters back on.  Thiamine reacts with the genetic mechanism of the transporters so the transporters turn back on and allow thiamine into cells.  

I was on medications that are  known thiamine antagonists.  My doctors didn't have a clue what was going on. They wrote me off as hypochondriac.  

The World Health Organization has a field test for Thiamine deficiency.  Thiamine deficiency can be diagnosed if 500 mg of Thiamine HCl is given several times a day for several days and improvement is seen.

Since Thiamine Hydrochloride is nontoxic and water soluble, cheap and widely available, I tried it.  I had improvement within an hour.  

I found Dr. Derrick Lonsdale's research and his book with Dr. Chandler Marrs.  As recommended, I take Benfotiamine which has been scientifically proven to help heal the digestive tract.  And I take Allithiamine which is helpful for neurological problems.

If I hadn't seen and felt the benefits of Thiamine myself, I wouldn't be here.  

Drs. Lonsdale and Marrs' article

Hiding in Plain Sight: Modern Thiamine Deficiency

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

[TheFuzz]

19 hours ago, T burd said:

I was almost feeling all better after celiac diagnosis at 38. Only slight joint pain compared to now. The HCQ helped while on it, but made it worse after. And the heart flutter means I cannot be on That. If it is lyme and confections the anti parasitic properties could have been why it was working. It isn’t typical lupus. I’m just not totally convinced either way, so I’m experimenting to see if antibiotics helps. Methotrexate gave me some bad reactions immediately. Twitching. I basically can’t be medicated. 

A Rhumatologist should be able to find you the right medication, I don't think biologics have nearly as many side effects.  You really don't want to leave joints inflamed for too long or they will be permanently damaged.  Even if the immune issues were triggered by lyme disease, there is no guarantee treating lyme will resolve them.  You need to get the joint issues suppressed.

[T burd]

57 minutes ago, TheFuzz said:

A Rhumatologist should be able to find you the right medication, I don't think biologics have nearly as many side effects.  You really don't want to leave joints inflamed for too long or they will be permanently damaged.  Even if the immune issues were triggered by lyme disease, there is no guarantee treating lyme will resolve them.  You need to get the joint issues suppressed.

I am pretty sure it’s too late for them not to be permanently damaged. My shoulders grind and pop so much, just from my normal swing when I walk. And I keep injuring them. No doctor has ever recommended I go to a joint specialist… 

[TheFuzz]

7 minutes ago, T burd said:

I am pretty sure it’s too late for them not to be permanently damaged. My shoulders grind and pop so much, just from my normal swing when I walk. And I keep injuring them. No doctor has ever recommended I go to a joint specialist… 

If they suspect Lupus, the first referral should have been to a rhumatologist.  It doesn't matter what caused it(in your case, possible Lyme).  It may not be Lupus, it may be RA(my diagnosis had a lot of Lupus indications, but it's all a bit of a gray area, and ultimately, I was diagnosed with RA.

[T burd]

24 minutes ago, TheFuzz said:

If they suspect Lupus, the first referral should have been to a rhumatologist.  It doesn't matter what caused it(in your case, possible Lyme).  It may not be Lupus, it may be RA(my diagnosis had a lot of Lupus indications, but it's all a bit of a gray area, and ultimately, I was diagnosed with RA.

I did go to a rheumatologist that said that no labs were showing enough to have any diagnosis. Then I moved and went to a new rheumatologist and he found the anti-histone antibody, and put me on the HCQ which did more damage than good. My heart was damaged. he had to give me prednisone in order to come off of it. 
After just 2 methotrexate pills I decided against that route. But this year has been hard with the Inflammation.
 

I’m going to try the thiamine. already ordered 500mg

I have had good days when I’ve taken certain vitamins but I can never pinpoint what vitamins are helping. Thiamine is in the amberin perimenopausal vitamin and B complex I have, so it could be that. 
 

 

[TheFuzz]

On 10/4/2022 at 5:09 PM, knitty kitty said:

Hi! 

@T burd,

I found this article that says antihistone antibodies are found in Celiac Disease.  Are there different or specific ones for Celiac and Lupus? 

High Frequency of Extractable Nuclear Autoantibodies in Wheat-Related Disorders

https://pubmed.ncbi.nlm.nih.gov/29977112/

 

HCQ, hydroxychloroquine, causes thiamine deficiency by blocking the Thiamine and folate transporters prohibiting thiamine and folate from getting inside the cells.

@TheFuzz, you'll be interested to know that both of your medicines are on this list.  

 

Drug–nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3)

https://academic.oup.com/ajcn/article/111/1/110/5637679

 

Some of the symptoms you mentioned are also symptoms of Thiamine deficiency.  I had the palpitations or tachycardia but doctors couldn't find anything wrong.  I had the "waddle like a duck" change in gait, I had aches in old bone fractures, and more.  See if your symptoms are similar to Thiamine deficiency.

Vitamin B1 Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/books/NBK537204/

 

Here's an article where people had lupus and thiamine deficiency....

Wernicke's encephalopathy mimicking neuropsychiatric symptoms in patients with systemic lupus erythematosus: a report of three cases and literature review

https://pubmed.ncbi.nlm.nih.gov/27416844/

Here's one....

Biochemically and histopathologically comparative review of thiamine’s and thiamine pyrophosphate’s oxidative stress effects generated with methotrexate in rat liver

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3560789/

 

Y'all have been on medication that causes thiamine deficiency.  

You might like to discuss this with your doctors.

P.S.  High dose Thiamine is needed.

Hiding in Plain Sight: Modern Thiamine Deficiency

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

 

I've been taking a B-complex for a few years, it helped with my nerve pain and stomach issues.  It's 100mg B1.  When you tried a high dose, how many did you take in a day?  Curious if my mental issues could be related to it.

[knitty kitty]

4 hours ago, TheFuzz said:

I've been taking a B-complex for a few years, it helped with my nerve pain and stomach issues.  It's 100mg B1.  When you tried a high dose, how many did you take in a day?  Curious if my mental issues could be related to it.

High dose Thiamine has been life-changing for me.

I started with Thiamine Hydrochloride, 300 mg, with each meal.  I tried Benfotiamine and Allithiamine.  These are fat soluble forms of Thiamine that can get into cells.  Benfotiamine has proven helpful with gastrointestinal symptoms, while Allithiamine helps with neurological (brain function) symptoms.

I learned about high dose thiamine from Dr. Lonsdale and Dr. Marrs, and Dr. Overton. 

 https://www.hormonesmatter.com/beyond-deficiency-thiamine-metabolic-stimulant/

And...

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

I even have Dr. Lonsdale and Dr. Marrs' book.

https://www.hormonesmatter.com/thiamine-book-what-reviewers-say/

Every one is different.  So you should experiment (ah, the life of a lab rat).  There's a paradox.... some people feel worse a few weeks after starting thiamine supplementation, but it goes away if you keep taking thiamine.  Back off the dose a bit and titer up slowly.  It's your body getting back to normal functions.  Sort of life a car backfiring when it hasn't been cranked for a while.  

And take Magnesium (Glycinate or citrate or taurate).  Magnesium is needed for Thiamine to work properly.  

A LOT of my mental problems have been resolved with high dose Thiamine.  I'm so glad you're giving thiamine a try. 

Keep us posted on your progress!

[TheFuzz]

On 10/10/2022 at 1:51 PM, knitty kitty said:

High dose Thiamine has been life-changing for me.

I started with Thiamine Hydrochloride, 300 mg, with each meal.  I tried Benfotiamine and Allithiamine.  These are fat soluble forms of Thiamine that can get into cells.  Benfotiamine has proven helpful with gastrointestinal symptoms, while Allithiamine helps with neurological (brain function) symptoms.

I learned about high dose thiamine from Dr. Lonsdale and Dr. Marrs, and Dr. Overton. 

 https://www.hormonesmatter.com/beyond-deficiency-thiamine-metabolic-stimulant/

And...

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

I even have Dr. Lonsdale and Dr. Marrs' book.

https://www.hormonesmatter.com/thiamine-book-what-reviewers-say/

Every one is different.  So you should experiment (ah, the life of a lab rat).  There's a paradox.... some people feel worse a few weeks after starting thiamine supplementation, but it goes away if you keep taking thiamine.  Back off the dose a bit and titer up slowly.  It's your body getting back to normal functions.  Sort of life a car backfiring when it hasn't been cranked for a while.  

And take Magnesium (Glycinate or citrate or taurate).  Magnesium is needed for Thiamine to work properly.  

A LOT of my mental problems have been resolved with high dose Thiamine.  I'm so glad you're giving thiamine a try. 

Keep us posted on your progress!

Sorry for the long delay...I did try thiamine but didn't notice any changes.  I was up to almost 2000mg a day, which was a lot of pills to swallow.  I tried for about 1.5 months.  

Anyway, I've just been diagnosed with fibromyalgia, so that explains a lot of the brain stuff.  I'll just add it to the long list of incurable chronic diseases I seem to be collecting.