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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Anne AMP

Digestive Enzymes

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Is it OK to take digestive enzymes early in recovery? I have been gluten, corn, rice, soy, milk, nightshade free for one month and still have brain fog, weakness, and a little looseand cannot put weight back on (97 lbs). I am only able to eat a few veggies, chicken and beef and pears - all cooked. I'm afraid that digestive enzymes will be harsh.

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What kind of digestive enzymes would you be interested in taking? There are enzymes for panreatic insufficiency. They are needed when the part of the pancreas that produces enzymes does not work.

They are very expensive and not needed if pancreas works fine.

Are there others who have tried enzymes and felt they helped?

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Anne, you may try taking them AFTER eating, rather than before. I heard that they're a lot more effective in people with celiac disease that way. I followed that advice before I discovered that the enzymes I was taking had salicylates, and stopped. But while I took them before meals, they'd give me a stomach ache, and they didn't when I took them after meals.

Also, glucosamine sulfate will help heal your intestines faster. Your diet sounds like mine did for many months. It will get better, hang in there.

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Is it OK to take digestive enzymes early in recovery? I have been gluten, corn, rice, soy, milk, nightshade free for one month and still have brain fog, weakness, and a little looseand cannot put weight back on (97 lbs). I am only able to eat a few veggies, chicken and beef and pears - all cooked. I'm afraid that digestive enzymes will be harsh.

My pancease works fine. I just read on the internestthat celiac disease heal their intestines faster with digestive enzymes. Wondering if this is true?

Anne, you may try taking them AFTER eating, rather than before. I heard that they're a lot more effective in people with celiac disease that way. I followed that advice before I discovered that the enzymes I was taking had salicylates, and stopped. But while I took them before meals, they'd give me a stomach ache, and they didn't when I took them after meals.

Also, glucosamine sulfate will help heal your intestines faster. Your diet sounds like mine did for many months. It will get better, hang in there.

One web site said Glutamine. Is this similar to glucosamine sulfate? Where can I get this?

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Guest cassidy

I take digestive enzymes all the time. I take them with most meals and have found a big difference. My mom is very sensitive and she didn't do well with them but there are lots of people here who take them. I believe mine are enzymedia and they are vegetarian.

I wonder if you have something else going on. I wasn't feeling great after going gluten-free and I had problems with candida, an amoeba, nasty bacteria and almost no good bacteria. If you don't start feeling better you might want to have more tests done.

Also, more than digestive enzymes, you may try probiotics. Good bacteria is especially important to us and that may help you tolerate more.

I hope you feel better.

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My pancease works fine. I just read on the internestthat celiac disease heal their intestines faster with digestive enzymes. Wondering if this is true?

One web site said Glutamine. Is this similar to glucosamine sulfate? Where can I get this?

there is a theory that proteases (protein digesting enzymes) will clean up ulcerated intestines and act as a a sort of antiseptic to aid that sort of healing, I don't know if thats true. A lot of enzyme instructions come with a warning not to take if stomach ulcers are present - which sort of contradicts that theory. My only personal experience on this matter is that sores in my mouth did heal quickly despite eating powdered enzymes.

another healing theory is that fiber digesting enzymes will kill candida fungus (by splitting the casing of the candida plant) thus allowing a leaky gut to heal better - from personal experience I believe this to be true.

there is another theory that taking starch digesting enzymes will allow the body to feed on the starch carbs instead of feeding the candida. From personal experience I believe this to be true.

there is another theory that by taking enzymes which would normally be produced by the intestinal villi (but are damaged by celiac) then by not feeding bad bacteria more likely to get a good intestinal bacteria balance. I'm not celiac so this wouldn't apply to me, although by getting better digestion plus probiotics i've been able to get a friendlier bunch of bacteria to live in me :)

I don't think that enzymes can help the villi grow back if thats what you read on the internet.

my problems aren't understood (least of all by the docs), all I know is that I need to ingest a massive quantity (20 tablets or so, or the powdered equivalent with one small meal) to remain fit and active (I wither away without them). I agree with Ursula's suggestion that taking them after eating reduces any chance of a stomach ache, I take the enzymes during and after eating.

every one is different, not everyone needs them. Only way of finding out if they help is to try them.

cheers,

Mike

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They help a lot with bloating and stomach pain for me. They only work for me if I take them at the beginning of a meal.

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I've been gluten-free for 1.5 years and just started taking digestive enzymes a few months ago. They do seem to help me.

I read a book called "Micro Miracles" by Ellen Cutler. She says to only take the plant based/vegetarian enzymes because they can survice the acidity of the stomach (or something like that). I'm taking Digest Gold by Enzymedica. The label says no: dairy, soy, wheat, gluten, yeast, nuts, etc.

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just an fyi - my nutritionist advised me that while they could cause no damage, that digestive enzymes were fairly pointless. He said the pancrease produces enough enzymes to break down 15 meals, much less one. Take it or leave it...

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just an fyi - my nutritionist advised me that while they could cause no damage, that digestive enzymes were fairly pointless. He said the pancrease produces enough enzymes to break down 15 meals, much less one. Take it or leave it...

well that may be true for the world champion competetive eater! - a young Japanese fellow I believe who can pack away an incredible amount of hot dogs.... but not all of us have that digestive capacity.

your nutritionist is assuming a working pancreas with all the nerve feedback loops in place to make it operate properly. That statement is like saying that a diabetic doesn't need insulin coz the pancreas makes more than enough to cope with glucose in the bloodstream.

I'm not diabetic so i don't need insulin and that specific function of my pancreas works, similarly someone with a perfectly operating pancreas will not need, protease for protein digestion, amylase for starch and lipase for fat. But for example the pancreas does not produce lactase for milk sugar - that is the job of the villi. So would your nutritionist say that a celiac who has had villi flattened would not benefit from lactase supplements coz the villi produce more than enough lactase?

my villi aren't flattened and seem to produce the enzymes for digesting sugars very well - i know this coz if i ingest fruit juice or something similar on an empty stomach i get an immediate burst of energy with no bloating.

However if I attempt to eat meat or starch without proteases or amylases digestive misery is guaranteed for me :(

not everyone needs them - I do

cheers,

Mike

PS I visited a nutritionist who was very enzyme supplement aware and dealt with cystic fibrosis patients (blocked pancreas ducts) so allthough their pancreases can make enzymes it gets blocked from reaching the small intestine. CF patients take about 20 animal based enzymes per meal.

also enzymes can damage - cause intestinal damage - this is known from observing cycstic fibrosis patients taking large quantities of pancreatic (animal product) enzymes. The long term effects of plant based enzymes (which is mainly what I take) is not known as far as I can find out. But I want to live a reasonable life now and am not prepared to wait until more complete knowledge is available, so I take large quantities of them now. The alternative for me is that I will get very very thin without them

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I know loraleena said the enzymes need to be taken at the start of the meal and ursula suggests the opposite. I agree with both suggestions! To me its not contradictory coz of the different types of enzymes. I dose myself with the following categories of over the shelf enzymes

1. fiber digestive enzymes eg cellulase. this can be taken at the start without stomach irritation and I think its most effective at controlling candida when done that way. Enzymes such as beano say they have to be taken at the start, same with lactase (but I'm not lactose intolerant so I don't need this) they will not stop the bloating if taken at the end apparently.

2. amylase starch digesting enzymes - I find this works best for me if I either mix in the powdered form with the food to get an even delivery from the start, or munch the chewable tablets at regular intervals from the start of the meal. They don't seem to irritate my stomach.

3. protein digestive enzymes proteases or protelytic enzymes are the ones that have the potential to irritate my stomach. So I mix in powdered enzyme with my food and due to the large quantity I need take some protease tablets at the end of meal

the amylase enzymes that I have seen and use all have some protease and lipase enzymes mixed in too. Something has gone horribly wrong with my digestive system and I wish I didn't need all these supplements, and even with all that I can't eat normal meals. Have to eat protein on without any complex carbs or I'll get bloating and indigestion. When I eat a protein meal I do not take any amylase. When I eat a predominatly starch meal I don't take much protease.

I just finished eating cabbage and 3 oz of tuna. Thats all I ate. Took 4 servings of fiber digesting enzyme (these are good for constipation too) with the cabbage which I ate first. then 3 over the counter pancreatic enzymes and 4 servings of pure protease (an expensive formula) then 7 tablets of cheap papain from papaya plant, then 4 tablets of cheap bromelain from pineapple plant. Its not fun, but thats what I have to do - at least i haven't found any better solutions. If I live like that I get to enjoy an active life ie physical sporting activity :) but social eating forget it :(

Before I go to bed I'm going to have some sticky rice, gluten-free scones, nut butter and avocado, and take a heap of amylase enzymes (8 servings) and one serving of the expensive protease formula

cheers,

Mike

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regardless of whether the pancreas is working or not , even a perfectly functioning human body produces no cellulase fibre digesting enzyme at all. So why would I ever want to take this?

a cow apparently has plenty of this enzyme floating around in the multiple chambers of its stomach. But I'm not a cow living exclusively on grass, although of course I do eat veg. I think a human would die if it tried to live entirely on grass.

I do take a multi-enzyme formula with cellulase and quite a lot of a more sophisticated fibre digesting enzyme which is designed to break down phenols, amines which some ppl are sensetive too (particularly autism sufferers). I don't seem to be bothered by foods containing those chemicals but the fiber digesting effect seems to benefit me. I ran out of my supply of this particular enzyme a while ago and the quality of my number 2 went down, so I know its good for me, plus seems to keep candida under control.

I was thinking perhaps the huge difference between a cows diet and a human is why pancreatic animal extracted supplements (as opposed to vegetable based enzymes) is why they use a pigs pancreas to produce the extract for human consumption? Interesting to note that even a cows body produces no cellulase at all, instead it is produced by the huge quantities of bacteria flora in its stomach chambers. so maybe thats why fiber digesting enzymes benefit some ppl like myself? Helps keep the bacteria/yeast balance in good order.

there are so many different types of commercial enzyme available now.

cheers,

Mike

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I stopped posting here for a while, partly because I was feeling better and partly because I had given up finding out what had gone wrong with me and any improved methods of fixing/coping with digestive failure. I'm really doing the same thing as when I joined this forum. Separating out the carbs from protein and taking massive doses of enzymes. There are two reasons for this - one is that carbs like an alkali digestive environment and amylase enzymes require that, whereas protein likes some initial breakdown with acid and the proteases are happy in acid. So to eat a mixed meal the two opposing requirments start fighting each other. Additionally enzymes are proteins and apparently some proteases are capable of digesting ie destroying the amylases that are needed for carb breakdown. A perfectly function digestive system can cope with all this and just produce all the right enzymes at the right time and no problem with lost enzymes from acid killing the amylases - just produce more replacement enzyme. My system unfortunately copes very badly with this scenario.

I've also given up and restarted requests to Kaiser healthcare to investigate me several times. I don't have scales at home but my lowest weight was recorded at 107 lb with all clothes on (i'm 5' 7 1/2") and I know I got thinner than that :( . I think it was about six months ago that I went to Kaiser (after repeatedly pleading via email messages) to see the gastro specialist.. Eventually he agreed to see me and I weighed in at 120 lb which for me is a big big improvement. I explained how the enzymes had helped me and asked him to prescribe me Creon a brand of prescription only pancreatic enzyme. My reasoning was that if i could achieve that weight gain with over the counter veg enzymes then really powerful pancreatic enzymes like what they give cystic fibrosis sufferers could do better job than the over the counter enzymes I was using?

He said no :angry:

so yes I am much stronger now but far from well, I have to get absolutely everything right, the timing of my meals, everything weighed and calculated and matched to measured quantities of enzymes, or else digestive misery is guaranteed.

I've been well enough to focus on other things too which is partly why I didn't look at this message board, the gastroparesis message board and the enzyme message boards that I subscibred to. The last time I visited kaiser was to attend the minor injury clinic - had difficulty raising my arm above my head. Was diagnosed as having a sprained or possibly partly torn rotator cuff in my left shoulder. They weren't satisfied with my explanation that i fell and wanted to know exactly how I fell, so had to confess that I came off my skateboard from the top of a skateboard ramp and got sent off to x-ray. No fractures, this is sort of relevant to my digestive woes, I've been diagnosed by a scan as having osteopaenia, which must be a result of being calorie starved. But I am slamming concrete from my skateboarding hobby, I'm not saying that I have strong bones but its seems that they aren't really weak either, I've been hitting it hard enough to cause soft tissue damage to things such as hips and elbow, but so far, touch wood, not breaking anything. So low bone densitiy doesn't necessarily mean really fragile bones. On this basis I refuse to take fosamax which was bad for my stomach when i tried it briefly.

cheers,

Mike

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I started on the enzymes about a month ago and I've seen a lot of improvement in a number of areas, from better memory, less brain fog, more energy, more milk (breastfeeding). Enzymes never occurred to me, it was my GI who suggested it, especially after seeing how wasted the inside of my stomach was (he said it looked like what they see in geriatric patients with severe malnutrition and pernicious anemia). I'm taking Ultrase MT 20:)

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..... I'm taking Ultrase MT 20:)

thanks for that info Satori, I just looked up ultrase mt 20, also goes by the brand name Creon which is what I asked for. It was the suggestion of the nutritionist that I go on this . Of all the healthcare professionals I met, the nutritionist was the most understanding of my condition and appreciated just how difficult it is for someone like me to eat sufficient calories. The usual answer to increase weight is eat more - with me this is counter-productive. Eat more => feel sick => can't eat for a long time => lose weight. She wanted to get me off my vege based zymes of which she had no idea of dosing and effectiveness and treat me like a CF patient.

The resulting refusal of the Gastro Specialist to prescribe me creon went something like this:

Mr J My stomach motility has returnede due to going gluten-free, but unless I take my enzyme supplements I fall apart and atlhough I'm bigger I'm still thin. Won't Creon be more effective?

Gastro Doc: I think you are doing alright, normal albumin in blood, thats the first sign of malnutrition to me.

Mr J: But I still need all these enzymes, what makes you think my pancreas is functioning well enough?

Gastro Doc: your elastase test came back normal.

Mr J: I was told I could keep taking my enzyme supplements for that test, so I did but could they have skewed the results?

Gastro Doc: No

Mr J: the test was specifically for human elastase and not just any animal elastase? therefore any supplements I was takinng including my over the counter pancreatic supplements wouldn't have been part of the amount measured?

Gastro Doc: Yes

Mr J: but could it have had an "enzyme sparing effect" in other words all the supplements I was taking meant that all the elastase didn't get used up and therefore measure normal.

Gastro Doc: Hmmm

Mr J: Is it possible that the feedback loop which stimulates my pancreas has gone wrong and that my supplements are stimulating some missing nerve link and telling my pancreas to operate and thats why they work?

Gastro Doc: maybe.

Mr J: but you do accept that I'm struggling and that not everything is right - my bone density tests, my measured hormone levels were all off even though I've recently restored them thru increase in supplements.

Gastro Doc: oh yes, there is clearly something going on there - hormonal I think.

Mr J: but given the good results i've had with vege enzymes wouldn't Creon be worth ago.

Gastro Doc: I can't justify it

Mr J: why not?

Gastro Doc: all your tests came back normal

????

cheers,

Mike

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Satori, is your situation such that your pancreas is ok, but the enzymes help overcome other problems?

on the subject of finding another doc the gastro specialist was unresponsive, so I had asked my primary care kaiser doc to prescribe me Creon, but she balked at this request due to inadequate experience in this field. this might partly have been coz when I was suffering from gluten induced gastroparesis, she agreed to prescribe me metaclorocipramide (reglan) another drug with which she had no experience - this drug played havoc with my mental well being! so thats sort of understandable that she didn't want to give in to any request I made. I'm stuck with this gastro specialist.

I've been sent to an endocrinologist - the result of that went something like this:

Mr J: I'm pleased that your are checking out all my hormones but this loss of hormones has happened to me before, I think its lack of nutrition. When I found a way of consuming more food things got back to normal, its just that my eating ability is so degraded now, thats why I think its happened again.

Endocrinologist: ok some of the results are looking suspicious so I'm going to get some extra tests.

Mr J: thanks

2 weeks later...

Endocrinologist: we think your loss of hormones is due to inadequate nutrition.

so many of my tests have come back normal, that they don't want to look at me any more.

got tested by the allergy dept - nothing.

allergy doc did notice one thing not related to allergies though - low chloride. I consume a high salt diet - crave it actually, somewhow my body is leaking chloride.

Allergy doc: you have low chloride, have you tested for cystic fibrosis?

Mr J <whassat?>

results of CF sweat test - leaking chloride but only a borderline amount.

go for CF genetic test - test 25 known CF mutations - negative (but apparently there are lot more possible mutations).

However doesn't really fit as my lung capacity is normal for my size and that function is normally impaired in CF sufferers.

I think I need more knowledge and more possibilities to follow up, before I go back to kaiser or i will hit a brick wall again.

right now I'm doing alright, quite well actually - on a restricted diet and over the counter enzymes, but if I look over the past year I do seem to be needing to take more and more of these which worries me. But right now I've got some breathing space and thinking time. Until recently I haven't been thinking, just getting on with the rest of my life.

cheers,

Mike

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Enzymes are very good for your digestion. I use Enzymatic Therapy's completegest

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I am taking l-glutamine powder, 20mg twice a day, with pro and pre(FOS) biotics.

I found that my blood sugar stablized in a couple days. The sweats stopped and I cleared up the congestion and cough I have been plagued with for years.

I am anxious to see what the doctor says about the other enzymes you folks are taking. He's indicated that the l-glute in these doses is a short term treatment.

He also said that Pancrease MT10 should not be taken for more than a month because it can dirupt normal pancreatic function.

I also take Guza Gum (Benifiber).

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just following on from my previous posts...

I've contacted both my regular doc and the gastro doc about my worsening condition, that way it will be more difficult for the lazy gastro specialist to ignore me.

despite my elastase test coming back normal - this was over 6 months ago. I don't think my pancreas is functioning properly. There are other tests, maybe I can persuade them to do. I am undeniably underweight but coz an initial round have tests have mainly returned normal, the gastro specialist has previously told me to just carry on with my over the counter enzymes.

Mike

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I've gone round in a circle trying to figure out and guess what has gone wrong with me. Originally though enzymes, but found enzyme supplements didn't help much (but thats coz I didn't know much about what are the good ones and how much to use).

suspected too little stomach acid, but drinking vinegar and taking acid capsules didn't help. Doc suspected too much acid so gave me pepsid, that didn't help. Neither of these things made me worse either.

then I discovered that gluten was switching off my vagus nerve and stopping stomach motility (gastroparesis). Like many of the ppl here, I hoped that removing gluten would sort everything out, but it didn't :( Having my stomach motility restoraed to its normal rumbling self is a big help, so i won't go near gluten, but its not the complete answer to my digestive distress. I then chased other possible food intolerances with no result. Absolutely removing milk products had no effect despite the casein anti-bodies. I've been unable to find other intolerances.

so my current thinking is that malabsorption hasn't shown coz when my system has digestive trouble it slows everything down to a crawl until absorbtion/digestion does occur - i've had a history of constipation. Similarly i'm guessing that the quantity of elastase enzyme detected per number 2 read normal coz there was so little throughput in my system so it doesn't take much to read normal.

I recently tried taking pepsin - the stomach enzyme which gets digestion going for protein in the stomach, but that didn't help so i'm now back to suspecting the exocrine function of the pancreas which supplies enzymes to the small intestine.

I've got my appt with the gastro doc later this month and am going to ask for extra tests. Anyone had the secretin test for the pancreas?

Mike

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as many of you would know, its a haphazard process for non experts such as ourselves to search the net for possible causes. I once came across the symptoms of gall bladder problems which seemed to fit. There is a procedure for forcing out possible obstructions called the liver flush which I posted here: my old post on my liver flush experience

this showed that my gall bladder was not obstructed and also the normal colour of my number 2 suggests that bile is flowing freely in my system so another dead end.

I have normal blood amylase levels (not elevated which would suggest pancreatitits), normal bilirubin - these things tell the gastro doc that my pancreas/bile production are ok. I've read about the symptoms of pancreatitis - i don't think i've ever had the pain that is described with those symptoms, not sure i've had any pain at all in that region. There is a current thread on that topic here and pain is mentioned. So I can see why the gastro doc hasn't wanted to investigate my enzyme production further.

But given my very positive response to enzyme supplements, in particular the ones produced by the pancreas, thats what I'm suspecting. But maybe another dead end?

cheers,

Mike

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......

right now I'm doing alright, quite well actually - on a restricted diet and over the counter enzymes, but if I look over the past year I do seem to be needing to take more and more of these which worries me. But right now I've got some breathing space and thinking time. Until recently I haven't been thinking, just getting on with the rest of my life.

cheers,

Mike

shortly after I wrote that my digestive system seems to have taken another backwards step. I ate a snack of nuts for some energy and took with it 2 ZymePrime brand multi enzymes - mainly protease and amylase and not much lipase even though nuts have a lot of fat. But its difficult to find hi lipase multi zymes over the counter and this is a good enzyme product and always worked reasonably with nuts. I spent about 1hr 15min of fairly hard activity in the skatepark which i do regularly so nothing unusual. But I remember feeling unusually tired after that, ate my evening meal and felt fairly dead then, bloating and indigestion set in. This did not go away the next day so I've had to cut back on the fat in my diet - which was never that much, which means less energy :( But yesterday I was feeling good, I've found that 8oz of goat milk, with corn grits and half a banana digests fairly well when I mix in the Garden of Life omega zyme powdered product (4 packed scoops). To that I add Peptizyde brand protease which is meant to be good at breaking proteins which are similar to casein and gluten (although i'm not on gluten of course). I had some more goat milk and grits before visiting the skatepark yesterday and it gave me good energy for an hour or so :)

this gave me the idea that maybe predigested feeding formulas like what they give to those with g-tubes (feeding tubes) or to allergy stricken babies might work. So bought some predigested baby formula from the supermarket today. I had a baby formula milk shake this afternoon and works quite well! I added some zyme prime and it digested well. The fats in that formula are mainly MCT which apparently don't need lipase digestion in the same way. Is unrefined coconut oil like what can be bought from whole foods rich in MCTs? anyway i've been using that instead of nut butters the last few days. So right now i'm feeling reasonable again, but i really don't think i've got any more extraordinary eating possibilities left when my system declines further.

I'm quite annoyed with my gastro doc, about a year and half ago he did an endoscopy which was normal (no biopsy - despite all my symptoms gluten intolerance hadn't occurred to him) as it happens my villi are almsost certainly fine (don't have celiac) but what annoys me is that just coz he couldn't find anything he just told me to go home and carry on despite being very underweight. He had no intention of investigating anything else any further.

cheers,

Mike

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    • Hello all! I am new on here, and I was wondering if it worth a look for me to get tested for celiac disease. I've been experiencing severe stomach aches accompanied by issues with loose stool, constant fatigue, lots of infections, worsening of skin on my face, frequent nausea, lots of trouble losing weight. I'm asking because I was feeling better at home from vacation after having a very rough semester at school and I'm not very good at keeping track of what I eat typically, but at home it is mostly vegetables and meat, with the occasional rice thrown in. This morning I had my first bagel in months and was extremely nauseous with severe pains and urges to run to the bathroom.  Do y'all think it is worth a try to get tested for celiac disease or some type of gluten intolerance? I'm so tired of being sick and not knowing why... Thank you <3 
    • LexieA, I agree with Plumbago. The symptom's of low stomach acid and high stomach acid are similar so it is easy to confuse the symptom's of one as the other. Dr. Myatt explains this well in her online article about stomach acid. http://healthbeatnews.com/whats-burning-you/ quoting "But My Symptoms Feel Like Too Much Acid…" Strong stomach acid and pepsin quickly "emulsify" fats and proteins, making them ready for the next step of digestion, passage into the small intestine. When these digestive factors are weak, food remains in the stomach for longer and it begins to ferment. Gas pressure from the fermentation can cause bloating and discomfort and can can also cause the esophageal sphincter to open, allowing stomach contents to "backwash" into the esophagus. Even though weak stomach acid is the central cause of this, even this weak stomach acid, which has no place in the esophagus, will "burn." This burning sensation confuses many people, including doctors, who then "ASSuME" that excess acid is to blame. Too little acid, resulting in slowed digestion, and gas which creates back-pressure into the esophagus is the real cause of almost all "heartburn" and GERD." so  you can see how they can easily be confused for each other. you no doubt are having stomach acid issues but it is because it is too little or too much? Timeline helps us determine which it is. If it happens when we eat something it is already to low to  digest the food we are eating. if eating something cause the heartburn/gerd to improve (especially meat) then your stomach acid is really too high especially if this happens between meals. because eating something will naturally dilute/lower the stomach acid pH. I wrote about my stomach acid being misdiagnosed on my celiac.com posterboy blog. ( have summarized most of what you need to know in this reply but the post is still there if you want to study it more for yourself. if your not taking an antacid now then taking BetaineHCL should improve digestion. If it does then raising your stomach acid by lowering you pH should improve your digestion. study on the best way to take powdered stomach acid before trying this. but I found taking 3 to 4 capsules in the beginning was easier than taking only 1 or 2 in the beginning .. .  until I could back it down to only needing one per meal or now none per meal to aid digestion. which is what we are shooting for.  The place where our body is now producing our stomach acid naturally at a healthy level. if you feel a "warm sensation" in your stomach you have reached a good level. I hope this is helpful. I only know it helped me. *** this is not medical advice but I hope you have as a good experience with it as I did. Usually peopledon't  have a trouble taking BetaineHCL unless they have an ulcer or already taking PPI's which are actually lowering  their stomach acid contributing to a viscous cycle of being locked into taking PPI's long term. if PPIs are taken for more than 6 months they can be almost impossible to stop/quit because of the acid rebound people experience when trying to stop taking them cold turkey and why they recommend stepping back doses by 1/2 gradually so they don't get overwhelmed by the stomach acid your stomach is  able to produce again naturally itself (hopefully). . . if taking betaineHCL jump started your ability to produce stomach acid again. . . if not taking betaineHCL (Powdered Stomach Acid) can replace what the body is missing much like taking a hormone. chris kresser has a good online article on this subject as well. https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/ he says it well. quoting chris kresser. "If heartburn were caused by too much stomach acid, we’d have a bunch of teenagers popping Rolaids instead of elderly folks. But of course that’s the opposite of what we see." **** this is not medical advice but I hope it is is helpful. posterboy by the grace of God, 2 Timothy 2:7 "Consider what I say; and the Lord give thee understanding in all things".  
    • Lex_ I agree with Ennis_Tx. You need to take some Magnesium.  It works best as a Magnesium Citrate or Magnesium Glycinate. Magnesium Citrate are easiest to find. Take it 2/day for the first couple weeks to see how much more energy you have. Then you can take it with each meal or 2/day and one hour before bedtime if it is not convenient to take it at work. If it is working you (right form of as a Magnesium Citrate or Glycinate) you will will experience vivid dreams. And wake up with enough energy to take on the day. **** this is not medical advice but it really helped my chronic fatigue symptom's. It is good for leg cramps too also known as charley horse's. posterboy,
    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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