Author Topic: Sjogren's and GI -low stomach acid and its symptoms  (Read 6423 times)

Kendo

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Sjogren's and GI -low stomach acid and its symptoms
« on: September 12, 2010, 01:42:24 PM »
Hello everyone:
|'ve been on a long journey with many different doctors looking at me and my lab results who thought I was crazy so I thought it was time to post for others' benefit. I've had low calcium in my blood for over two years. It presented quite quickly and I had pain, tingling in extremities, mental confusion and balance and speech problems. After multiple sclerosis, Lymes disease and many other things were ruled out, it was found I had low blood calcium. My mom is celiac so I started a very strict gluten-free diet and that only helped some symptoms. But I still needed over 4000mg of elemental calcium to stay alive and upright.

I've seen GI docs, endocrinologists, a neurologist, opthamologist and a rheumatologist  I had started on 20 mg of Losec (=Prilosec=omeprazole) three years ago for reflux symptoms and worsening asthma. Taking it reversed all the symptoms in 48 hrs. During my low calcium days, I ended up with pain under my right rib and in lower right mid section of my back. I'd had upper GI endoscopy (no lingering damaged villi from celiac disease) and a GI CT scan, abdominal ultrasound and later a colonoscopy which were all normal.  My GI doc doubled my Losec to 40mg and the pain disappeared again. I've had 4 nasty 72hr fecal fat tests, most of which show borderline fat malabsorption. One test was done with pancreatic enzymes and I felt amazing - lots of energy and no more diarrhea but the pain from the enzymes drove me off them.

So with chronic diarrhea (which last GI doc said "Just take Immodium as necessary") and 4500mg of calcium a day to stay alive, I turned to a naturopath. At the first free consult she said "Did you know that the pain from low stomach acid can feel the same as reflux?" EURAKA moment! My mother has achlorhydria diagnosed at 19 and my grandmother as well.  I'd mentioned that to GI docs but they said I had high stomach acid, not low! So first she gave me a 200 question form and followed it by one on nutrition/malnutrition (in my case!) with 300 questions. As I expected, I had a small intestinal bacterial overgrowth from having my stomach acid lowered so much. She gave me strong probiotics that cleared up a year-long battle with the BIG-D in less than a week. Then we started addressing the stomach acid issue. I knew I had low stomach acid on the 40mg of Losec so getting off that was a challenge but it was helped with the betaine HCL capsules she gave me. Miraculously, I no longer needed 4500mg of calcium a day! After a few weeks of stabilizing my normal levels, it turns out I still have naturally low stomach acid like my mother. I also have low pancreatic enzymes and taking those with meals with lots of protein or fat  really help the bowels.

All these symptoms -achlorhydria, bacterial overgrowth and low pancreatic enzymes- fit with Sjogren's. To date I have a tentative Sjogren's diagnosis from the rheumatologist but am not dry enough or have enough joint pain to treat. But the amazing thing I wanted everyone to know is that the dreadful fatigue is gone! I was lying on the couch exhausted from grocery shopping six weeks ago. And now I am working full-time, doing volunteer work, my musical activities and have energy to spare. I wonder how many other people have subtle malabsorption problems that are causing some of their fatigue.

 I was very resistant to head to a naturopath as I am trained as a biochemist and have worked for years in research with MDs. But I urge anyone who has strange digestive issues and no real diagnosis of reflux to have themselves checked out. Mainline medicine would have eventually killed me by the absence of digging deeper or "thinking outside the box". A fresh pair of eyes and a very intelligent health care provider have me back in better balance. I'm sure my journey with Sjogren's will be a long one but before I was living month to month and very close to a bathroom with handfuls of supplements, trying to guess what I'd be deficient in next!
Kendo
Seronegative for Sjogren's, Celiac, MG; ANA pos, eat GF, calcium disorder, asthma, probable myasthenia gravis, low potassium, low stomach acid, fat malabsorption.
Mestinon, calcium, Vit D, 600 mg NAC, multi Vit, B50 complex, potassium, evening primrose oil, fish oil

Kerrikins

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Re: Sjogren's and GI -low stomach acid and its symptoms
« Reply #1 on: September 12, 2010, 05:15:25 PM »
I have hypochlorhydria (low acid) too! For years I had chronic heartburn, it was constant, I've had low energy, malabsorption, bad breath, unhealthy hair, pain under the right ribs all the time and finally within the past 2 years I've developed multiple food and drug allergies. I'm not sure if this caused my SJS or vice versa but I am positive they are related. I take 2-3 betaine HCL capsules(650mg each) with meals and in between meAls I take digestive enzymes as needed. This provides almost total relief from the heartburn and under-rib pain and I haven't developed any new allergies in the last few months. I battle with thrush as well and nothing I've taken has eliminated it. Probotics make things improve but it always comes back and prescription meds didn't touch it.. I haven't had any vitamin/mineral labs done so who knows what I may be deficient in. You are right, mainstream Drs know nothing about this. I mentioned it to my Dr on friday, to explain my supplements, and he actually said I was weird. Said with a smile, but still he had never heard of this. I diagnosed myself just by buying the supplements. They didn't make my heartburn worse so I knew that I was low. I wish hypochlorhydria was more well-known, so many people would be experiencing better health. Thanks for posting about this! :). Eta, it looks like it is known by both achlorhydria and hypochlorhydria, i didn't know that!
« Last Edit: September 12, 2010, 05:20:22 PM by Kerrikins »

newhorizons

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Re: Sjogren's and GI -low stomach acid and its symptoms
« Reply #2 on: September 12, 2010, 10:09:12 PM »
Kendo, Your post has set off bells ringing in my head... :-\  Have felt for months that I had possible malabsorption issue.

Gastro in May ruled out celiac disease he said by visually looking while doing endoscopy but also did blood work. I'm not in the medical field so took his findings without question...

This low stomach acid idea certainly rings a bell... though would have been the opposite as to what I would have thought.

Your calcium runs low and also blood calcium where mine continues to run close to top of range even after R upper parathyroid was removed 5 years ago along with large tumor (3 gram). Surgeon remarked it was size of walnut and also removed a suspicious gland nearby. He remarked he felt I was very fortunate that it was gotten out when it was.

The Vitamin D thing has been a concern with the Duke Med. Ctr. Endocrinologist at Durham, NC. She continues to slowly increase my D level. She commented one needed to be careful with Vitamin D. Do you know why she'd make this statement about D? This past May she increased it from 1,000 to 2,000 units daily as it was still at the bottom of the scale.

I live in TN but have traveled to DUMC since being diagnosed at John Hopkins in 1995 with Sjogren's and severe eye issues

Going to read your informative posts and ponder over it tomorrow. 
Any thoughts you might send my way will be greatly appreciated.

irish

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Re: Sjogren's and GI -low stomach acid and its symptoms
« Reply #3 on: September 12, 2010, 10:49:38 PM »
I am visiting at my son's and am not taking time to do any research for the time being. The reason one has to watch the vitamin D intake is because it is not excreted as well from the body and builds up in the system. I would think that people should be careful about what dose they take of the D and try to check with their doctor.

Also, it is generally thought that the reason for the sjogrens stomach acid problem is not necessarily because of high or low acid. It is because their is a lowered level of saliva and what saliva is produced is not normal in because of the effect of the autoimmune disease. This leaves us with acid that does not get diluted like it should and it will chew on out esophagus and stomach lining.

The prilosec and other meds of its kind tend to cause lowered absorption of calcium. This makes sense of what you are referring to. People who take the inhibitors are very apt to suffer from osteoporosis. This also supports the low blood calcium levels you speak of.

I have heard of some people who swear that taking a teaspoon or so of vinegar and your stomach problems will dissapear. I would think that this would help people who have low acid, however, wonder what it would do to people with normal acid levels and low saliva. This will be interesting as it continues to play out. Irish ;D

TSund

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Re: Sjogren's and GI -low stomach acid and its symptoms
« Reply #4 on: March 04, 2011, 07:08:00 AM »
This is one of the more interesting threads I have seen.  I know after research that much of GERD and reflux etc is caused by low stomach acid.  However, I had read that for Sjorgren's persons the acid was too much due to lack of saliva, etc., which implies the need for less acid thus I had been afraid of trying HCL.  I have been trying to avoid the proton pump inhibitor drugs but wasn't sure which way to turn.  Looks like I should reconsider!  I also feel like I suffer from slow digestion; so this might help?

I've also read about apple cider vinegar, has anyone tried this?


Bella

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Re: Sjogren's and GI -low stomach acid and its symptoms
« Reply #5 on: March 04, 2011, 08:32:43 PM »
Hi Kendo, I too, found your post really interesting.  How did the naturopath know you had low stomach acid.  Just by your symptoms?  Or is there a test for it?  And why did your medical docs think you had high GI acid?  Why was your calcium so low -- because you weren't absorbing it from your food?  If that's the case, why weren't other blood results low -- like albumin, or other minerals?  I'm just wondering because that's really amazing about your calcium overall.

There's a genetically inherited disease called Exocrine Pancreatic Insufficiency, most often seen in German Shephard dogs, that your post reminded me of.  The dogs are often diagnosed in the first year of life when they can't gain weight, and have chronic foul smelling diarrhea.  They also often have small intestine bacterial overgrowth.  Treatment consists of pancreatic enzymes mixed thoroughly in the food.  

Congratulations on solving your problems.  Another fine example of how the medical profession too often doesn't want to "look outside the box".  It's great to hear of success stories like this!
« Last Edit: March 04, 2011, 08:46:10 PM by Bella »

louise

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Re: Sjogren's and GI -low stomach acid and its symptoms
« Reply #6 on: March 07, 2011, 01:28:36 AM »
Thanks I am calling my doctor tomorrow. This sounds a lot like what I have been suffering with. I have had pain in my right upper abdomen for several days now along with all the other symptoms people have mentioned here.
primary sjogrens, adderall xr, diclofenac ,vitamin d3, percocet, b12,b6, omega3, ibuprofen, protonix, voltaren gel, lots of sugarless gum and candy.

Liz D.

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Re: Sjogren's and GI -low stomach acid and its symptoms
« Reply #7 on: March 07, 2011, 09:06:07 AM »
Bella,

Someone mentioned to me about apple cider vinegar when I was in the midst of my worst GERD episode.  I was desperate to try anything.  Well, it did NOT help at all!!  In fact, that night was the worst pain I have ever had.  It felt like my stomach was just being stabbed all over with knives.

Liz D.
51 year old female
Sjogrens Syndrome (diagnosed 2004, but problems started in 2000), hypothryoidism, asthma
Plaquenil 400 mg; Synthroid 100mcg; Evoxac, Asmanex, Flonase, Protonix 40 mg., Prozac 40 mg.,  Xanax as needed.

sage

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Re: Sjogren's and GI -low stomach acid and its symptoms
« Reply #8 on: March 07, 2011, 04:52:26 PM »
I was very resistant to head to a naturopath as I am trained as a biochemist and have worked for years in research with MDs. But I urge anyone who has strange digestive issues and no real diagnosis of reflux to have themselves checked out. Kendo
Kendo: are you there?  I see this post was started in September last.  Here is another naturopath doctor who mentions sjogren's syndrome in his list of disorders that can lead to Stomach Acid and Hypochlorhydria - "hypochlorhydria if you have too little, or achlorhydria if you have none."  Dr. Daniel Heller, Marin County Naturopath
http://drdanielheller.wordpress.com/2010/12/30/stomach-acid-and-hypochlorhydria/
Excerpt:  "However, an important aspect of the role of stomach acid is being overlooked, and that is the potential consequences of improper digestion of protein. This can cause a variety of problems related to immunity and digestion. Other serious conditions can cause low stomach acid, which will then lead to other problems. A partial list of some of these conditions is below, though you should note that some are caused by low stomach acid, while others listed cause low stomach acid."

Kendo: it would be nice to hear if you are still doing better and any further feedback. 
All the best  Edith

Rose G

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Re: Sjogren's and GI -low stomach acid and its symptoms
« Reply #9 on: March 07, 2011, 06:57:34 PM »
Kendo,  I also would like to know how you know about the acid.  Too much or too little.  I have a lot of stomach issues.  Gastroparesis is one.  Had it the first time 3 years ago for about 8 months, then it went away.  Anyway, now it is back and I take protonix.  I was taking just 1 a day, so the GI dr increased it to 2 a day and a zantac at night.  I take no calcium supplement or anything and am now wodering about all this.  The 2 protonix and 1 zantac have not helped anyway (I have taken 1 prtonix a day for over 10 years for acid reflux and gastritis which an EGD just 2 weeks ago show I still have after all these years....really, no improvement after all that medicine?)   Dr had no answer when I asked him that.  I think that is way too much acid reducers.  How do you find out all this stuff, let me know, please!!  Also just finished 14 days of Emycin, again did not help.
SS, gastroparesis, Lisonopril, protonix, multivitamin, calcium with D3, ambien cr.

TSund

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Re: Sjogren's and GI -low stomach acid and its symptoms
« Reply #10 on: March 10, 2011, 05:12:01 AM »
some natural stuff for reflux, gerd, etc that can really work for some people:

DGL
Zinc
mastic gum
good probiotic
digestive enzymes

I've been trying these; (tho not HCL yet)  things seem much better.  I would love to avoid the heavy duty drugs.  Still do not know if SJS = low acid or high!  

TRS
« Last Edit: March 10, 2011, 05:16:45 AM by TSund »

cbreeaze

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Re: Sjogren's and GI -low stomach acid and its symptoms
« Reply #11 on: March 10, 2011, 06:21:31 AM »
Wow am I confused. I failed my barium swallow Tues and am currently waiting on a GI referral for further testing.  Most likely an endoscopy.  I always thought the heartburn was a pretty definite over acid problem.  During that test when they layed me down they could see that the bottom of my esophagus wasn't pushing the food down all the way and letting it come back up.  Even though Ive had reflux problems for yrs it has increased for fold since Dec.  Right now I'm taking 40mg of prilosec twice a day and I still have break through heartburn daily.  Rheumy said it was likely to my MCTD weakening the muscle.  Could low acid be a problem? I also take vit d sup 1000 daily.  Maybe I shouldn't. 

TSund

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Re: Sjogren's and GI -low stomach acid and its symptoms
« Reply #12 on: March 10, 2011, 08:41:48 PM »
I highly recommend that you read  about GERD, reflux, etc.  and the circular problems that the acid blockers can cause.  There are a couple books on Amazon, but I suspect that you can get the same info on-line.

I am fortunate to have a GP who does not believe in using drugs unless absolutely necessary.   She recommended the DGL and zinc  listed above.  She said the mastic acid should be used for pylori.  It's interesting to read the reviews on Amazon for these products,  while they don't prove anything  necessarily, it seems several times over that people say they have tried the traditional meds and these have worked better for them in the long run.  My Dr.  also says that patients who can go off of sugar and wheat often do better but I'm not sure I can bring myself to do that just yet. (guess I"m not quite miserable to enought to do that!)  The DGL etc. are definitely helping, and I 'm sleeping better too.  I am also taking some digestive enzymes and they seem to help also.

Also recommended is raising the foot of your bed anywhere from 1.5 inches to 6 inches.  This would be especially important if the esophgus isn't closing correctly.   


lindaneall

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Re: Sjogren's and GI -low stomach acid and its symptoms
« Reply #13 on: March 18, 2011, 10:31:42 AM »

My naturopath introduced me to an excellent resource regarding low stomach acid and the overuse of PPI's. Dr. Jonathan Wright at the Tahoma Clinic (www.tahomaclinic.com), has written some excellent books and articles. If you go to his website, read the articles he as written "The Digestive Theory of Aging:Part 1 and Part 2).  This is SO interesting!!

Diane54

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Re: Sjogren's and GI -low stomach acid and its symptoms
« Reply #14 on: March 18, 2011, 03:27:13 PM »
I have suffered from Gerds for the past 20 years. I even had the fundoplacation operation for gerds which did not help....been on Prilosec (perscription not OTC) for the past 20 years also. Maybe that was my first symptom  of Sjogrens way back then who knows? ???
Sjogren's diagnosed Dec 20, 2010, Hypothyroid, Diabetes 2, Autoimmune Hepatitis, Mitral Valve  Prolapse, Gerds, Antiphospholipid Syndrome,  Synthroid, Paxil, Prilosec, Evoxac, Plaquenil, Tramadol, Simvistatin, Restasis, Baby Asprin, vitamin D, Januvia, Amlodipine, Gabapentine