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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Digestive Enzymes
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23 posts in this topic

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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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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Can you see another Dr?

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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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      I don't worry about the same facility, but I check if it is on the same lines. I think it is usually a good idea to find out if things are made on shared lines. And if they are made on the same line as gluten-containing products how good is the cleaning in between? Chocolate is a good example of this. For example, I contacted a company whose chocolate I used to eat before being diagnosed and they outright told me they are not good about cleaning on shared lines and it is not safe for allergies or celiac. I have had this response from other companies as well (especially when it comes to chocolate sadly). I think this is why Godiva is not safe. Its just a good idea to check.
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect.  I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member).  I still simper and grovel and cringe and apologetically turn things away.  People still put dishes in my face and say "This should be gluten free..."  and I have to awkwardly not eat it and then seem rude.  I've done the whole...checking the bottles thing too.  I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others.  Anyway...no OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be.   A few times I will still brave eating something...like some little mozzarella balls with vinegar...though, I did still look at the labels.  Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do.  Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned.  I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh.  It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
    • Mashed potato soup during healing
      I was on pretty much a liquid diet for 8 months waiting for my nausea to go away completely. I mostly had mashed potato soup, 1/2 fat ice cream (mostly whey, not milk), chocolate drink (no added milk) and gummy vitamins. The soup tasted yummy and I'm still alive so I figured I'd share it for people not feeling well in the beginning. I've been noticing people with alot of trouble keeping food down in recent posts. I couldn't have milk or eggs, but the cheese in the recipe didn't bother me at all. Notice the lack of spices. Makes it easy on the stomach.   Mashed potato soup: Boiled yukon gold potatoes (5lb bag) 1 package cauliflower, steamed 4-6 slices of Land O'Lakes white American cheese 4 tablespoons butter salt 16 cups homemade chicken broth, salted   Chop steamed cauliflower into teensy bits (pureed is better). Put in mixer with butter, cheese and a potato or two. Blend while slowly adding potatoes. Keep whipping for a few minutes to insure the cauliflower and potatoes are not lumpy at all. Salt to taste.   Combine 1/2 cup mashed potatoes to 1 cup salted chicken broth. Mix with spoon until mashed potatoes have completely dissolved. Enjoy. Individual servings can be frozen.   Homemade chicken broth: makes 8 - 10 cups of broth   1 organic chicken (regular chickens are too big) 1 stalk celery 1 carrot 1 large bay leaf 1/2 package fresh thyme from the  herb section of the vegetables area   Put all ingredients in pressure cooker along with 1.5 liters water. Bring to pressure. Cook for 35 minutes. Separate broth from solids. Separate broth from fat. Add ridiculous quantities of salt until it tastes like soup. Sorry I use a salt grinder so I don't have precise salt quantities.    
    • I have kidney stones...spent last night at the ER
      Hey ArtG, I saw the urologist today...unfortunately for me they can still see my stones on an xray.  Sigh.  The largest is 3x6 in my right kidney.  He does not believe I can pass this one on my own.   All of my bloodwork came back fine.  Nothing alarming in the urinalysis either. His recommendations...keep drinking tons of water.  I had 4.2 liters of urine output when I tested.  Add in a fish oil supplement.  Decrease sodium intake.  Limit meat to 10 ounces per day.  Increase dietary calcium.   Work at lowering oxalate consumption...my urinary oxalate was 45.  They want it between 20 and 40.  But he gets people that are over 100 so mine is not all that high. 3 options...1. watch and wait.  Recheck in a few months to see if there is stone growth.  2. Shock wave lithotripsy.  3. Let it come out when it decides to and see what happens. I just don't know.  I hate the idea of being put under as they would do for the shock wave thing.  I've had too many surgeries already.  It scares me to be honest.  I also don't want to deal with another episode.   I don't know what I'll do.  We've got a vacation planned at the end of the month and I just want to go and enjoy that.  Not worry about kidney stones. I'm sorry to hear about your upcoming surgery...it really is always something!
    • celiac disease is psychosomatic
      I know what food products are. Probiotics was a recent example I saw on the news about things labeled gluten free that were not gluten free. So, supplement labels in addition to food labels.
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    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
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    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
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    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
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