Why do so few allopathic/western medicine docs attempt to diagnose hypochlorhydria, or treat it?
May 6, 2011 3:31 PM Subscribe
MedicalConfusionFilter: Do I have hypochlorhydria (low stomach acid) and/or reflux, or not? There's at least 2-4 diagnostic gadgets out there for measuring digestive pH. One of them ought to confirm it for sure, no?
Due to a mystery stomach illness I've had for a long time, I've been researching "silent reflux disease" and hypochlorhydria (low stomach acid) since it sure seems like I've got some variant of that. I have been to many many doctors, including the Mayo Clinic in AZ, and tried a battery of things with very little result....but I feel like I'm getting close. I have a bunch of symptoms in line with silent reflux (hoarseness, constant throat clearing, tons of mucus all the time, despite allergy/sinus treatments/exams from ent & allergist).
If there are devices that exist that can provide exact data, and the data seems definitive (I know there are plenty of tests that can have vague results out there unless you get a super-clear positive), I can't understand why some docs have told me the following:
"you definitely have low stomach acid based on this test result, we're treating for that"
(the Heidelberg capsule test, showing a fasting pH of between 5 and 6)
"totally normal examination with no sign of reflux whatsoever" - (Bravo pH test: "Although he had numerous symptoms , his reflux for
duration of the first day had only 10 refluxes. None were longer than 5 minutes. In fact , the longest was 1 minute. The time the pH was less than 4 was 5 and the fraction of time was 0 . 2 with a total DeMeester score of 1 . 1 with normal being less than 14.724 . This was broken down where DeMeester score for day 1 was 1.5 and for day 2 was 0.5.) -
Finally, talking to an eminent doctor who is an expert on silent reflux - "those tests are unreliable, and so are most of those gi tests for reflux, you need a manometry and a much higher dose of drugs" - I have heard that treating silent reflux can be more difficult and resistant than non-silent reflux, tho. But, the tests were a waste of time, then?
Of course I've also had the usual battery of lower gi and barium tests, 3 endoscopies. No esophageal manometry yet, or HIDA scan for gallbladder function, but everything else.
Then one doc said he would treat low acid with ppi's the same as if I had measured hyperacidic.
bwah?
Stuff I've gleaned from my researching you shouldn't have to mention, but feel free to correct me if you think I'm wrong -
1. Apparently, having too little an amount of stomach acid can cause symptoms that are much like "hyperacidity".
2. Most people I run across have now heard of the term "reflux" (less often the acronym "GERD", which stands for gastroesophageal reflux disease) and generally believe it refers only to people who typically get frequent heartburn.
3. It is likewise most often assumed that the root cause of reflux is 'too much stomach acid.' In fact it's usually? because the lower esophageal sphincter (LES) has started losing its ability to keep the stuff you have in your stomach where it's supposed to be, for whatever reason. (It's more common in industrialized countries, by far, so it's likely our diets, but it is still uncertain).
4. Why the LES freaks out if you have too little stomach acid, nobody seems to know, either.
5. If lifestyle, diet, & exercise changes don't work - and you don't want to risk surgery - PPI's are generally the band-aid that western docs reach for.
6. Some people will also try anti-depressants, whether due to the doc's belief that stress / actual depression / altering the amount of serotonin in your gut / or damage to the vagus nerve, is the cause.
Ok Me-dical-Filtes, go to town.
Due to a mystery stomach illness I've had for a long time, I've been researching "silent reflux disease" and hypochlorhydria (low stomach acid) since it sure seems like I've got some variant of that. I have been to many many doctors, including the Mayo Clinic in AZ, and tried a battery of things with very little result....but I feel like I'm getting close. I have a bunch of symptoms in line with silent reflux (hoarseness, constant throat clearing, tons of mucus all the time, despite allergy/sinus treatments/exams from ent & allergist).
If there are devices that exist that can provide exact data, and the data seems definitive (I know there are plenty of tests that can have vague results out there unless you get a super-clear positive), I can't understand why some docs have told me the following:
"you definitely have low stomach acid based on this test result, we're treating for that"
(the Heidelberg capsule test, showing a fasting pH of between 5 and 6)
"totally normal examination with no sign of reflux whatsoever" - (Bravo pH test: "Although he had numerous symptoms , his reflux for
duration of the first day had only 10 refluxes. None were longer than 5 minutes. In fact , the longest was 1 minute. The time the pH was less than 4 was 5 and the fraction of time was 0 . 2 with a total DeMeester score of 1 . 1 with normal being less than 14.724 . This was broken down where DeMeester score for day 1 was 1.5 and for day 2 was 0.5.) -
Finally, talking to an eminent doctor who is an expert on silent reflux - "those tests are unreliable, and so are most of those gi tests for reflux, you need a manometry and a much higher dose of drugs" - I have heard that treating silent reflux can be more difficult and resistant than non-silent reflux, tho. But, the tests were a waste of time, then?
Of course I've also had the usual battery of lower gi and barium tests, 3 endoscopies. No esophageal manometry yet, or HIDA scan for gallbladder function, but everything else.
Then one doc said he would treat low acid with ppi's the same as if I had measured hyperacidic.
bwah?
Stuff I've gleaned from my researching you shouldn't have to mention, but feel free to correct me if you think I'm wrong -
1. Apparently, having too little an amount of stomach acid can cause symptoms that are much like "hyperacidity".
2. Most people I run across have now heard of the term "reflux" (less often the acronym "GERD", which stands for gastroesophageal reflux disease) and generally believe it refers only to people who typically get frequent heartburn.
3. It is likewise most often assumed that the root cause of reflux is 'too much stomach acid.' In fact it's usually? because the lower esophageal sphincter (LES) has started losing its ability to keep the stuff you have in your stomach where it's supposed to be, for whatever reason. (It's more common in industrialized countries, by far, so it's likely our diets, but it is still uncertain).
4. Why the LES freaks out if you have too little stomach acid, nobody seems to know, either.
5. If lifestyle, diet, & exercise changes don't work - and you don't want to risk surgery - PPI's are generally the band-aid that western docs reach for.
6. Some people will also try anti-depressants, whether due to the doc's belief that stress / actual depression / altering the amount of serotonin in your gut / or damage to the vagus nerve, is the cause.
Ok Me-dical-Filtes, go to town.
"those tests are unreliable, and so are most of those gi tests for reflux, you need a manometry and a much higher dose of drugs"
That seems like a very weird statement to me. My understanding of esophageal manometry is that it tests the strength of your esophagus at various points. I had the test done in advance of a nissen fundoplication for GERD, not as a diagnostic tool, but so the surgeon could understand how tight he needed to make the wrap given the way my particular swallowing worked.
Regarding your state number 5 -
5. If lifestyle, diet, & exercise changes don't work - and you don't want to risk surgery - PPI's are generally the band-aid that western docs reach for.
For me, PPIs were a much greater risk than surgery. We don't really know how they work, we have no idea about their long term effects, and we can't actually answer clearly whether their effects are reversible after being taken regularly for years.
They also had *horrible* side effects.
Surgery on the other hand seemed like a very low risk (but I'm young and in generally good health) compared to the side effects (known and unknown) of a lifetime of PPI use.
posted by colin_l at 4:22 PM on May 6, 2011
That seems like a very weird statement to me. My understanding of esophageal manometry is that it tests the strength of your esophagus at various points. I had the test done in advance of a nissen fundoplication for GERD, not as a diagnostic tool, but so the surgeon could understand how tight he needed to make the wrap given the way my particular swallowing worked.
Regarding your state number 5 -
5. If lifestyle, diet, & exercise changes don't work - and you don't want to risk surgery - PPI's are generally the band-aid that western docs reach for.
For me, PPIs were a much greater risk than surgery. We don't really know how they work, we have no idea about their long term effects, and we can't actually answer clearly whether their effects are reversible after being taken regularly for years.
They also had *horrible* side effects.
Surgery on the other hand seemed like a very low risk (but I'm young and in generally good health) compared to the side effects (known and unknown) of a lifetime of PPI use.
posted by colin_l at 4:22 PM on May 6, 2011
Response by poster: Porcine : I am looking for whatever seems like the best course of action. So far I have tried 3? different 2 week courses of several ppis, with zero effect... and a similar trial of Zantac. (Famotidine worked a little, but even a single dose gave me a monster headache and diarrhea). I have also tried a giant battery of holistic things, but I'm so incapacitated now, and lost so much weight, some of them that I'd ordinarily do are difficult. I used to regularly exercise, yoga, tai chi, hiking, dancing.. but now it's nearly nil due to breathing difficulty. Lungs are fine, they're always checkin' em. It's all crap in the throat and severe bloating.
I realize that it can take a lot longer than 2 weeks at a shot, depending on your case, so I've been on dexilant 60mg again recently. So far about 15 days... at first I thought it was working, but after a day or two, nada. An ENT told me I should add H2 blockers at night on top of that, which is apparently not unusual for stubborn cases where acid blockers will eventually do something.
All my EGD's so far showed 'gastritis', and they can see the stomach is super red and irritated, and my lower esophagus is starting to get that way, but no ulcers, no H. Pylori (multiple biopsies and stool samples).
I guess my question is really twofold - 1. I'm trying to figure out what to do to feel better, and I'm still uncertain what that is. An integrative medicine m.d., amongst some other non-allopathic folks, suggested I give Betaine HCl a try again, since I didn't really seem to notice anything before at the doses I was trying. Seems that if one is able to do without PPI's, it's preferable. But naturally if I can't, I'd prefer relief from the gunk in the throat at this point. Then there's the question: what if you are having silent reflux at night - but are remedying low acid during the day with additional HCl? Is that nuts?
2. I was under the impression that, you know. Some of these tests are proven to provide accurate pH data that should be useful in treating... something. I mean, if a person had a pH average that was even higher than mine - say like an 8, which I hear some older folks can eventually get to - it seems weird that they'd be on PPI's, assuming they don't have an ulcer. Which is back to my original question; do doctors just not see having 'low stomach acid' as something to be treated any differently than a low pH with regular GERD?
Colin : Yeah, I'm not saying it's not weird, but that's what the doc said. I believe that doc's opinion is that in general, gastro docs undertreat for silent reflux, and that pisses that doc off. What I was confused about - and I wrote an email to that person, seeing if I could get a response - was: "if that's the case, what do you, personally, think is the best test for this? Why?" Been several weeks, no answer.
posted by bitterkitten at 4:56 PM on May 6, 2011
I realize that it can take a lot longer than 2 weeks at a shot, depending on your case, so I've been on dexilant 60mg again recently. So far about 15 days... at first I thought it was working, but after a day or two, nada. An ENT told me I should add H2 blockers at night on top of that, which is apparently not unusual for stubborn cases where acid blockers will eventually do something.
All my EGD's so far showed 'gastritis', and they can see the stomach is super red and irritated, and my lower esophagus is starting to get that way, but no ulcers, no H. Pylori (multiple biopsies and stool samples).
I guess my question is really twofold - 1. I'm trying to figure out what to do to feel better, and I'm still uncertain what that is. An integrative medicine m.d., amongst some other non-allopathic folks, suggested I give Betaine HCl a try again, since I didn't really seem to notice anything before at the doses I was trying. Seems that if one is able to do without PPI's, it's preferable. But naturally if I can't, I'd prefer relief from the gunk in the throat at this point. Then there's the question: what if you are having silent reflux at night - but are remedying low acid during the day with additional HCl? Is that nuts?
2. I was under the impression that, you know. Some of these tests are proven to provide accurate pH data that should be useful in treating... something. I mean, if a person had a pH average that was even higher than mine - say like an 8, which I hear some older folks can eventually get to - it seems weird that they'd be on PPI's, assuming they don't have an ulcer. Which is back to my original question; do doctors just not see having 'low stomach acid' as something to be treated any differently than a low pH with regular GERD?
Colin : Yeah, I'm not saying it's not weird, but that's what the doc said. I believe that doc's opinion is that in general, gastro docs undertreat for silent reflux, and that pisses that doc off. What I was confused about - and I wrote an email to that person, seeing if I could get a response - was: "if that's the case, what do you, personally, think is the best test for this? Why?" Been several weeks, no answer.
posted by bitterkitten at 4:56 PM on May 6, 2011
Look up eosinophilic esophagitis. It suuuuucks to have it, but it might lead you to something. At one point I thought my baby might have it as she didn't respond well to reflux meds and had tons of food allergies (thankfully she tested neg!). Good luck!
posted by PorcineWithMe at 5:17 PM on May 6, 2011
posted by PorcineWithMe at 5:17 PM on May 6, 2011
I say this because you mention difficulty breathing and 'gunk' in your throat. You could also have eosinophilic gastritis or colitis each on their own or in conjunction. From your mention of bloat it has me curious if you've tried looking in the food allergy direction - in babies protein allergies often masquerade as reflux. (Sorry to keep mentioning children, but both my kids had severe reflux and multiple protein allergies. Both had lots of diagnostics and meds.)
posted by PorcineWithMe at 5:39 PM on May 6, 2011
posted by PorcineWithMe at 5:39 PM on May 6, 2011
Couple of thoughts - first, what I've heard (and noticed) about Betaine HCL is the tablet form is super ineffective compared to the capsule form (if you have super low stomach pH, how are you supposed to break down the binder on the tablets, anyway?)
I know the gluten-free people claim that it fixes everything from the common cold to unrest in the Middle East, but cutting out grains killed my gastritis dead within a week. I had a relatively mild case, of recent origin, but if you haven't tried that it's at least easy and cheap. (Acid reflux, on top of all my other pathetic ailments, was what finally made me suck it up and try the paleo thing for real, and now I'm a tedious drum-beater about it.)
posted by restless_nomad at 6:05 PM on May 6, 2011
I know the gluten-free people claim that it fixes everything from the common cold to unrest in the Middle East, but cutting out grains killed my gastritis dead within a week. I had a relatively mild case, of recent origin, but if you haven't tried that it's at least easy and cheap. (Acid reflux, on top of all my other pathetic ailments, was what finally made me suck it up and try the paleo thing for real, and now I'm a tedious drum-beater about it.)
posted by restless_nomad at 6:05 PM on May 6, 2011
I would buy Betaine HCL from www.purebulk.com and cap it yourself. The key is to take enough so that you feel some warmth in your stomach. This may be significantly more than is suggested -- you aren't going to overdose. In addition to the suggestions to go gluten free, sugar free also helps. Sugar feeds bacteria, and bacterial overgrowth can inhibit stomach acid production. Says a naturopath I visited.
posted by blargerz at 7:02 PM on May 6, 2011
posted by blargerz at 7:02 PM on May 6, 2011
Response by poster: Been gluten, yeast, and dairy free for 8 years now, folks. The bloat is specifically in the stomach (not lower gi). This all started after 5 years on the gluten/dairy/yeast free train, seemingly after a 2 or 3 day flu.. it just stuck with me and never went away. Recently seems to have gotten worse. I'm tempted to try paleo (cause cutting foods out of my diet is not big deal for me) - but - i have lost more weight than I should, and with zero complex carbs in my diet it seems I keep on losing. I am 5'10 & 150lbs, which is not ric ocasek thin for sure, but I've been there and don't want to go back. Yeck.
Porcine : yeah they biopsied me for e.e., no dice. They also did biopsies when they last colonoscopied me, plus the capsule endoscopy where it does the fantastic voyage all through your innards. I've also tried taking Gastrocrom, which is a mast-cell inhibitor that they have used in Nasalcrom for allergies, in case I might have had mastocytosis (of the stomach only, which is super rare). True, I could have developed some kind of new food sensitivity..
Nomad : that's a really good point about the binder.
blargerz : Even so, here's some more questions 1. will i feel 'warmth' even if I've never actually had heartburn as a result of this weirdo stomach ailment? I figure enough acid will eventually cause it... 2. as I mentioned above... suppose you are having refluxing at night.. doesn't seem like you ought to purposely take the Betaine on an empty stomach before bed, not that you were suggesting that. I just wonder about it. Re: Sugar: I eat almost zero refined sugar, no more juices except for coconut water (although I'm considering trying making my own carrot juice), few fruits but trying to increase veggies.
thanks so much for all your input, mefiters. My innards salute and appreciate you. If you have more thoughts, please feel free to keep posting.
posted by bitterkitten at 7:50 PM on May 6, 2011
Porcine : yeah they biopsied me for e.e., no dice. They also did biopsies when they last colonoscopied me, plus the capsule endoscopy where it does the fantastic voyage all through your innards. I've also tried taking Gastrocrom, which is a mast-cell inhibitor that they have used in Nasalcrom for allergies, in case I might have had mastocytosis (of the stomach only, which is super rare). True, I could have developed some kind of new food sensitivity..
Nomad : that's a really good point about the binder.
blargerz : Even so, here's some more questions 1. will i feel 'warmth' even if I've never actually had heartburn as a result of this weirdo stomach ailment? I figure enough acid will eventually cause it... 2. as I mentioned above... suppose you are having refluxing at night.. doesn't seem like you ought to purposely take the Betaine on an empty stomach before bed, not that you were suggesting that. I just wonder about it. Re: Sugar: I eat almost zero refined sugar, no more juices except for coconut water (although I'm considering trying making my own carrot juice), few fruits but trying to increase veggies.
thanks so much for all your input, mefiters. My innards salute and appreciate you. If you have more thoughts, please feel free to keep posting.
posted by bitterkitten at 7:50 PM on May 6, 2011
NOT OFFICIAL MEDICAL ADVICE. YOU ARE NOT MY PATIENT. (Sorry, I have to state that.)
What other meds are you taking? Side effects to most medications are still relatively rare but even if .01% of drug takers have an effect, it could just be their luck. (colin's take on PPIs is not one I share). I would look at your med list and see if any of them have the potential to contribute to your symptoms and see which ones I would be able to stop and see how you do.
Have you been formally tested for celiac disease? It's more frequent than thought and while you've been gluten free the tests might not be accurate, so you need to eat a regular diet and tested for it to see if specific treatments for that might help.
Reports for "non-acid" reflux which might be what you have show that "Gaviscon Advance" -- sodium alginate and potassium bicarbonate -- decreased acid exposure (whatever your pH your gastric juices are enough to cause gastritis) in the upper GI tract. It's over the counter and probably quite safe to try a couple instances after meals so you might try that.
Baclofen has also been reported to help with esophageal symptoms like yours.
Do all of this under the supervision of a doctor who sees you live. Listen to your stomach specialist and get the manometry.
If your symptoms won't get better in 1-2 days see a doctor. Make sure you follow up. See a doctor in person. Ask your own exact doctor about this advice.
Good luck and I'm sorry your stomach is acting up on you also.
posted by skepticallypleased at 9:57 PM on May 6, 2011
What other meds are you taking? Side effects to most medications are still relatively rare but even if .01% of drug takers have an effect, it could just be their luck. (colin's take on PPIs is not one I share). I would look at your med list and see if any of them have the potential to contribute to your symptoms and see which ones I would be able to stop and see how you do.
Have you been formally tested for celiac disease? It's more frequent than thought and while you've been gluten free the tests might not be accurate, so you need to eat a regular diet and tested for it to see if specific treatments for that might help.
Reports for "non-acid" reflux which might be what you have show that "Gaviscon Advance" -- sodium alginate and potassium bicarbonate -- decreased acid exposure (whatever your pH your gastric juices are enough to cause gastritis) in the upper GI tract. It's over the counter and probably quite safe to try a couple instances after meals so you might try that.
Baclofen has also been reported to help with esophageal symptoms like yours.
Do all of this under the supervision of a doctor who sees you live. Listen to your stomach specialist and get the manometry.
If your symptoms won't get better in 1-2 days see a doctor. Make sure you follow up. See a doctor in person. Ask your own exact doctor about this advice.
Good luck and I'm sorry your stomach is acting up on you also.
posted by skepticallypleased at 9:57 PM on May 6, 2011
No you don't take it without food, you take it before protein foods especially meat. For carb foods you should take an enzyme product like Enzymedica brand. The enzyme itself contains protein digesting enzymes which may render the HCL moot. There are no set answers here, you have to play with it. But HCL and enzymes combined with a good diet, which it sounds like you have, are the best tools I know of, and I suffered digestive problems for a long time, trying everything, before fixing it with this approach.
posted by blargerz at 10:33 PM on May 6, 2011
posted by blargerz at 10:33 PM on May 6, 2011
For the reflux, have you tried getting a sleep wedge or elevating the head of your bed? If the problem is acid reflux, it might help somewhat, at least at night.
Secondly, I don't know if you've already considered this already, but is it possible that the bloating could be caused by some kind of food intolerance? Might be worth looking into, especially any changes in your diet around the time your symptoms started.
Lastly, I don't know if this would help you, but it helped me: On the advice of other gastritis sufferers, I noticed many of them said they'd been helped by a combination of mastic gum and a probiotic. (And this is even more common on the gluten-free diet forums) I'd recommend the pearls probiotic. While my symptoms personally were a mix of reflux and bloating, (but mostly bloating) I also had problems with the acid levels too. I don't claim to understand why it works, but since taking the mastic gum and probiotic, my acid levels have been more stable, and I get much less reflux. Mastic gum has been shown in some circumstances to have anti-bacteria action in the digestive system, and probiotics taken over at least a couple weeks can regulate bacteria in the GI tract, but otherwise i'm unsure of the mechanism. Still, you might want to give it a try? It's not exactly a cure, but it sure can ease up the symptoms.
Good luck and hope you get better.
posted by tachikoma_robot at 3:10 PM on May 7, 2011
Secondly, I don't know if you've already considered this already, but is it possible that the bloating could be caused by some kind of food intolerance? Might be worth looking into, especially any changes in your diet around the time your symptoms started.
Lastly, I don't know if this would help you, but it helped me: On the advice of other gastritis sufferers, I noticed many of them said they'd been helped by a combination of mastic gum and a probiotic. (And this is even more common on the gluten-free diet forums) I'd recommend the pearls probiotic. While my symptoms personally were a mix of reflux and bloating, (but mostly bloating) I also had problems with the acid levels too. I don't claim to understand why it works, but since taking the mastic gum and probiotic, my acid levels have been more stable, and I get much less reflux. Mastic gum has been shown in some circumstances to have anti-bacteria action in the digestive system, and probiotics taken over at least a couple weeks can regulate bacteria in the GI tract, but otherwise i'm unsure of the mechanism. Still, you might want to give it a try? It's not exactly a cure, but it sure can ease up the symptoms.
Good luck and hope you get better.
posted by tachikoma_robot at 3:10 PM on May 7, 2011
That should be food intolerance or food allergy, rather. Also forgot to add that I wasn't helped by PPIs either. Tried three of em, nothing helped. I don't have any throat problems though, so I don't know if any of this is helpful. (I would try the sleep wedge though!)
Also, maybe this is an obvious dumb question, but you've been checked out for hernias, right? Hernias and h.pylori can cause low acid. I noticed you said negative on the h. pylori test, but I didn't see anything about possible hernia check? Low acid can happen sometimes because some part is trying to heal itself. If that was the case, it might not be a great idea to take Betaine HCL, since it would make the internal injury worse. But IANAD and all that, so yeah.
posted by tachikoma_robot at 3:28 PM on May 7, 2011
Also, maybe this is an obvious dumb question, but you've been checked out for hernias, right? Hernias and h.pylori can cause low acid. I noticed you said negative on the h. pylori test, but I didn't see anything about possible hernia check? Low acid can happen sometimes because some part is trying to heal itself. If that was the case, it might not be a great idea to take Betaine HCL, since it would make the internal injury worse. But IANAD and all that, so yeah.
posted by tachikoma_robot at 3:28 PM on May 7, 2011
Response by poster: Skeptically :
drugs: standard branded levoxyl, standard branded propecia, compounded t3, singulair, metanx (a prescription b-vit supplement). I am unaware whether any of those would have made this stomach problem begin or get worse... been on levoxyl for about 15 years with no noticeable stomach effect, the propecia for maybe 8?, singulair for only a couple months (i'm not even sure that stuff does anything), and the t3 for about 2 years. I will check on the fillers in that, all the rest are at least 'gluten free'. I hadn't started any new meds when this problem began.. I've considered environmental factors though. Unless there's something hidden somewhere in my apartment that's causing weird stomach stuff (already tested the water with a home kit) or at work (normal office cube environment, no weird chemicals around), that's out.
yes, I've had tests done for celiac; the biopsies a while ago plus a test from Enterolab and additional bloodwork that supposedly measures for it. In any case, I'm super vigilant about observing all labels and don't cheat on my gf/dairy free diet ever (although once in a while i have eaten a gfdf piece of bread in it that probably has yeast, and have also probably periodically consumed a thing here or there that says on the label 'Therefore, even though the products we stated are gluten-free, we cannot guarantee that there will be absolutely no traces of gluten, even with best Good Manufacturing Practices in place.') Perhaps I'll get extra hard-core about that, although since I've been gluten/dairy/mostly yeast free, I've really not noticed much ill effect in the lower g.i. Also, your suggestion about the testing is also interesting to me because - if I am truly gluten intolerant, and I'm already doing the diet as seriously as one possibly can, what else can you do? I mean, I'm not aware of any specific allopathic treatment for celiac disease other than 'don't eat gluten'. ? Also, none of the g.i. guys yet have even suggested a manometry (seems like it's a toss up whether they do it or ENT's do it), but I can ask my most recent one next time I go in.
tachikoma: I have tried every dang probiotic out there, pearls, enteric coatings, and megadoses (the VSL#3 supposedly makes some people suffer ill-effects at first due to detoxing and whatnot) but so far, no probiotic has made any difference at all! that I can tell. Maybe knowing my gut type would help, but science is still not quite up to telling which of us should have which bacteria down there yet.
I'm considering doing the following test from Metametrix though, just to make sure there's nothing bizarre going on in the lower g.i. that the Mayo clinic folks might somehow have missed.
No sign of hiatal hernia that I'm aware of; I figure they would have seen that looking down into my stomach during the 3 endoscopies, no?
--
Other stuff I haven't tried yet that various folks have suggested: oral anti-fungals, a course of liquid steroids, rifaximin, treating for Crohn's even though none of the tests seem to suggest it (I'm told you can have it affect only the stomach, but it's not common), various antidepressants
List of some other things I have tried: sucralfate, zinc carnosine, igg2000 (oral immunoglobulins), ginger supplement, turmeric supplement, fish oil, aloe powder capsules, acupuncture, yoga, tai chi, biofeedback, several (but certainly not all) anti-depressants
Thanks again, so much, people.
posted by bitterkitten at 9:29 AM on May 8, 2011
drugs: standard branded levoxyl, standard branded propecia, compounded t3, singulair, metanx (a prescription b-vit supplement). I am unaware whether any of those would have made this stomach problem begin or get worse... been on levoxyl for about 15 years with no noticeable stomach effect, the propecia for maybe 8?, singulair for only a couple months (i'm not even sure that stuff does anything), and the t3 for about 2 years. I will check on the fillers in that, all the rest are at least 'gluten free'. I hadn't started any new meds when this problem began.. I've considered environmental factors though. Unless there's something hidden somewhere in my apartment that's causing weird stomach stuff (already tested the water with a home kit) or at work (normal office cube environment, no weird chemicals around), that's out.
yes, I've had tests done for celiac; the biopsies a while ago plus a test from Enterolab and additional bloodwork that supposedly measures for it. In any case, I'm super vigilant about observing all labels and don't cheat on my gf/dairy free diet ever (although once in a while i have eaten a gfdf piece of bread in it that probably has yeast, and have also probably periodically consumed a thing here or there that says on the label 'Therefore, even though the products we stated are gluten-free, we cannot guarantee that there will be absolutely no traces of gluten, even with best Good Manufacturing Practices in place.') Perhaps I'll get extra hard-core about that, although since I've been gluten/dairy/mostly yeast free, I've really not noticed much ill effect in the lower g.i. Also, your suggestion about the testing is also interesting to me because - if I am truly gluten intolerant, and I'm already doing the diet as seriously as one possibly can, what else can you do? I mean, I'm not aware of any specific allopathic treatment for celiac disease other than 'don't eat gluten'. ? Also, none of the g.i. guys yet have even suggested a manometry (seems like it's a toss up whether they do it or ENT's do it), but I can ask my most recent one next time I go in.
tachikoma: I have tried every dang probiotic out there, pearls, enteric coatings, and megadoses (the VSL#3 supposedly makes some people suffer ill-effects at first due to detoxing and whatnot) but so far, no probiotic has made any difference at all! that I can tell. Maybe knowing my gut type would help, but science is still not quite up to telling which of us should have which bacteria down there yet.
I'm considering doing the following test from Metametrix though, just to make sure there's nothing bizarre going on in the lower g.i. that the Mayo clinic folks might somehow have missed.
No sign of hiatal hernia that I'm aware of; I figure they would have seen that looking down into my stomach during the 3 endoscopies, no?
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Other stuff I haven't tried yet that various folks have suggested: oral anti-fungals, a course of liquid steroids, rifaximin, treating for Crohn's even though none of the tests seem to suggest it (I'm told you can have it affect only the stomach, but it's not common), various antidepressants
List of some other things I have tried: sucralfate, zinc carnosine, igg2000 (oral immunoglobulins), ginger supplement, turmeric supplement, fish oil, aloe powder capsules, acupuncture, yoga, tai chi, biofeedback, several (but certainly not all) anti-depressants
Thanks again, so much, people.
posted by bitterkitten at 9:29 AM on May 8, 2011
Response by poster: OH yeah, also - while I do really really appreciate everyone's advice, and I don't mind that this thread sort of turned into "what should bk do", I am still baffled by the fact that most doctors don't seem to admit hypochlorhydria exists, and if it does, why insist on (at least initially) treating it exactly the same way as other potential acid / reflux conditions. Skepticallypleased , you mentioned that I could have a stomach afflicition caused by something being up with the acid, causing a problem, regardless of pH. I can accept this, but I still don't see why an m.d., particularly g.i. or ENT specialists, wouldn't be able to explain this to me when I ask them point blank.
I previously had found a link online to some m.d., unsure of his credentials otherwise, who claimed that when western medical science started really looking into ways to treat stomach ailments, there were no really good, mildly-to-not-very invasive tests to check stomach pH. So as time passed, medical students who questioned this were just given a shrug and told something like "it's too difficult, and it's rare that people have low acid, so we don't check for that."
posted by bitterkitten at 11:41 AM on May 8, 2011
I previously had found a link online to some m.d., unsure of his credentials otherwise, who claimed that when western medical science started really looking into ways to treat stomach ailments, there were no really good, mildly-to-not-very invasive tests to check stomach pH. So as time passed, medical students who questioned this were just given a shrug and told something like "it's too difficult, and it's rare that people have low acid, so we don't check for that."
posted by bitterkitten at 11:41 AM on May 8, 2011
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Are you looking for a diagnosis or are you looking for symptom relief? Sometimes you can only get ONE of those things.
posted by PorcineWithMe at 4:11 PM on May 6, 2011