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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? - 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Will Trace Amount Of Gluten Complelety Ruin All You Have Been Dieting For
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I have heard that even trace amount of gluten will damage your small intestines. I have not been diagnosed with celiacs but I have constant cankers sores (literally i have multiple canker sores in my mouth 20 days out of a month). I have received no help from the doctors about my cankers sore so I have decided to try a gluten free diet to see if this will help. I also am very underweight (6'2 135 lbs. male), so I am hoping that gluten is the culprit of my canker sores underweight problem. I really have no stomach problems just these two symptoms along with anemia and anxiety.

So my question is if somehow I consume trace amounts of gluten in my diet is it going to ruin my intestine and make all my dieting in vain? I just don't understand this because I use to consume large amounts of gluten so I would expect this to ruin the whole lining of the villi in my intestine. So then I would assume if I had just trace amounts in my diet then it would only ruin a small portion of the villi in my intestine, leaving the majority of the villi fine. Is this correct to assume or not. I would appreciate the expertise of a doctor on this topic but if anyone else know anything I welcome your help.

Thanks

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What damages our bodies is the antibodies we form from gluten. Early on in recovery many find they are more sensitive to trace amounts than after they have been healed for many years. It takes a while for the antibodies to leave the system, in the skin for example it can take up to two years. Trace amounts can make the antibodies flare into action and cause a severe flareup of symptoms. That is why we need to avoid sharing stuff like toasters, strainers and condiments with gluten eaters. Some are more sensitive to trace amounts than others. The best thing to do in the beginning is to go with as much whole naturally gluten free food as you can to give the antibodies the chance to leave your system. Will a trace amount like a shared line ruin all the progress you have made? Well trace amounts can keep the antibodies active and prevent you from healing fully. Would one or two accidental injestions send you back to square one I don't think so but it could take you weeks to get over it and have the antibodies subside again.

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Why don't you push for the celiac blood work? Most doctors will do that....also all four of the symptoms you mention could be celiac related....I have a friend whose only symptom is anemia, no other celiac symptoms. The blood work & endoscope was done & boom celiac!

Plus for meone must be 100% gluten free tohave the best results & without further damaging your body. If a person does it half way then one never knows if the gluten-free is or is not helping.....As Dr. Fansano says " Can one be half pregnant" don't think so......

hth

mamaw

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Thanks guys for your help, thats good to know. Im just starting my gluten free diet and it seems a little overwhelming but Im sure in time I will get use to it. I have been avoiding getting blood work because Im terrified of needles so Im just gonna do a test run at being gluten free and if it makes the canker sores go away I will happily give up gluten forever. No need for me to know for sure by getting the blood work/biopsy done if I find that this gluten free diet gets rid of these symptoms. Thanks again for your help

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I'm in the same boat as you are Justin. I'm about 5 weeks into gluten free. Last night I had some gluten free bread my mom made me, but it was made in a pan that was used for regular baking and it seems to have set me off. Not as bad as I used to get, but when you've been feeling perfect for a week, it's pretty easy to tell if you've been "glutened". I'm not planning on going to get blood work done either, for the same reason... I don't like needles, or doctors for that matter. I'd give you the same advice given to me though... If things get too bad, just suck it up and go to the Dr... It's not worth putting yourself at risk to avoid a needle.

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I have had negative blood test and skin biopsy results. But I don't need an official diagnosis to convince me to stop eating gluten. When I have it, I feel terrible...when I don't, I feel better. Good enough for me! Since going gluten free, I put weight back on (which is good but it happened rather quickly which was a little of a bummer - time to get back in the gym!!), I can eat a full meal without being uncomfortable, and my energy level is much better. Oh, and my skin condition (which I was told was not DH), magically cleared up on it's own. Whatever doctors - I don't need your diagnosis. I feel better and that's what keeps me from eating that donut in the break room! :-)

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My daughter's canker sore problem was diagnosed at Mayo Clinic as an iron malabsorbtion problem. Finding an iron supplement that she could absorb has helped the problem.

Her celiac blood panel was negative.

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I'm in the same boat as you are Justin. I'm about 5 weeks into gluten free. Last night I had some gluten free bread my mom made me, but it was made in a pan that was used for regular baking and it seems to have set me off. Not as bad as I used to get, but when you've been feeling perfect for a week, it's pretty easy to tell if you've been "glutened". I'm not planning on going to get blood work done either, for the same reason... I don't like needles, or doctors for that matter. I'd give you the same advice given to me though... If things get too bad, just suck it up and go to the Dr... It's not worth putting yourself at risk to avoid a needle.

Once you are gluten free your test will not come up positive and the test is not valid. You must be eating large amounts of gluten to have a valid result. So the original poster has to decide now if he wants testing before he goes gluten free.

All of your symptoms can be celiac. Not all of us have GI symptoms. And yes you must get rid of all gluten even trace amounts. But that doesn't mean that one little crumb will ruin all of your dieting. Getting glutened makes you sick but it doesn't undo weeks, months or years of healing from the diet.

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Even a trace of gluten will often give me a canker sore. I used to have them all the time eating lots of wheat.

There are lots of studies on how much gluten it takes to do damage. The answer is very little, and it depends on the person. A crouton a day is too much for all celiacs. Some might be able to eat a crumb every now and again with no damage. Other people will react to traces of gluten with very strong symptoms and they can't even eat the tiny traces of gluten that sometimes sneak into gluten-free breads and pasta.

Your idea of small amounts causing small damage is not quite how it works. It's more like a threshold response. A certain amount of gluten (that is different for everyone and can change from time to time) switches on the immune system and then ALL your small intestine is a potential target for damage. A slice of bread would definitely turn on the immune system more dramatically and for longer than a crumb, but a crumb can do the job just fine. The damage accumulates, so eating a few crumbs every day for a month might do more damage than a single slice of bread.

The really bad thing about celiac is that every time you turn on the autoimmunity, your immune system might learn to attack new and different things. You can end up with nerve damage, thyroid problems, dermatitis herpetiformis, or joint pain. The less often you eat gluten and activate autoimmunity, the better. This is why it's worth putting up with the blood test if you can stand it. You have a better idea of whether you have an autoimmune disorder, or just a food intolerance, and how big a deal it is when you do eat gluten.

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Thank you guys so much this really clears up the questions I had. I will try the iron supplements as well and lets you know if this helps the canker sores go away.

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Thank you guys so much this really clears up the questions I had. I will try the iron supplements as well and lets you know if this helps the canker sores go away.

Do get your iron levels checked before taking any more than is in a multivitamin. Iron can be toxic in large amounts.

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    • Pain wise a glutening celiac gets me more central gut pain and much worse with sharpness, urge to vomit, gurgles etc. UC is more along the the outside edges of your abdomen from the sides, lower area around the belt line, and upper area right under the rib cage, and is more of a boat and pleasure pain like your intestines are huge feeling.  UC triggers alot more gas, and makes you want to lie down I get the urge to massage and press on the pressure areas as it seems to help.
      Timing wise Celiac glutening I notice within 20-60mins and main vomiting starts in 1-3hours after eating it. UC flare you get it like 4-18hours or later depending on transit time of your food. A glutening will normally result in both a celiac reaction and a later UC reaction. For me a gluten CC or consumption issue also causes neurological symptoms, this is not true for some people but for me I also have a gluten ataxia, so the anxiety, panic, fog, mind looping, numb hands, loss of coordination or straight up motor loss is definite sign for me. Others will have to keep track with a food diary to nail down there own as every person can have a slightly different reaction.

      I also find with UC I do not directly vomit, Sometimes with UC it can trigger constipation and if not remedied in 12-24 hours leads to m system backing up and vomiting. Celiac can also cause me constipation but there is a slight difference in where it seems to get stuck at first. Hard to explain but you can sort of feel it. Also I find a gluten celiac response will result in a week or more of constipation issues. Starting mid section then moving to the outside gut area and  but some people do not get these and get D instead. So this is not very reliable.

      UC flare ups for me with my damage also always have bloody stools, worse flare ups its not just streaks but clots. Red and Dark red show it is in the large intestines. If you get tar like black  and red it is either a sign it is way back in the large intestine or in the stomach or small intestine. This makes my Anemia SOO much worse. Imagine how you feel with the loss of blood coupled with inability to efficiently absorb nutrients like iron and magnesium

      Thing to recall is UC is mostly the large intestine while celiac is mostly the small, so symptoms and trying to get the feeling of where the problem is can help.  Also if you get a glutening expect to have the UC flare up right after the celiac flare up.

      NOTE it is hard for me to say still, on the exact details and clarity, it has been since june of last year that I had a major gluten consumption issue. UC I get more regular but without the direct comparison in a while my memory is a bit iffy. Just trying to recall those exact pains and feelings from that last time. Also UC seems to wax and wane in and out while almost always being present for months in the background you just feel a bit off in the gut. SO many triggers, I felt that for years I swear til I went to this keto diet and dropped all fruit, sugar, carbs, and grains. Could have been the anemia, but I think it was more of a combination of the inflammation, bleeding, gas, and just being uncomfortable.
    • Hi!  I wasn’t sure where to post this inquiry so I’m sorry if it is in the wrong place!  My blood work was negative for celiac although biopsy was suspicious.  I have severe joint pain and GI issues so have decided to eliminate all gluten to see if that helps. I hear I may need to supplement my diet with vitamins to make up for what I’m missing, but I don’t know what vitamins they are!  Can anyone help? Thanks, Sarah
    • Hello everyone Thank you so much for all your contributions and tips, I'm sorry for my absence but I've had a big project deadline to complete. Over all, I think things are on the mend for me too.  I was quite cynical at the doctors' approach at first. I'd have much rather had a scope to find out what was happening, instead of being prescribed three months of omemprazole or zantac to see if it helped.  Unfortunately the gen on the zantac contraindictaions list stipulated that zantac should only be prescribed if your doctor is sure what is wrong with you, as it might otherwise be covering up cancer!  Those aren't the things a hypochondriac wants to read!  Anyway,  during this that time I've taken one months of omeprazole (20mg) and as that gave me D I changed to two months of zantac (most days only 75mg a day, but doubling the dose on odd occasions when the burn seemed to come back).  During much of this period I've tried to keep my diet low in fat, spicy food, drinking very little caffeine, drinking strong camomile and slipper elm, and I think a key help has not eating for a 12 hour stretch overnight because I think that really helps the stomach heal.  I hope my system is finally recovering and hope to come off the zantac towards the end of this month.  It is hard to phase these things out slowly when you are already on the minimum dose, but all the tips about marshmallow, licorice and slippery elm etc will no doubt come very helpful then!   I have come to the conclusion that this is a new weakness in my system and I'll have to be very careful to avoid gastritis in the future, by no longer taking asprin (unless the doctor ever tells me I have to), not over doing fat, greasy food, etc.  The last time I drank some sparkling wine or fizzy drinks was awful, so I shall avoid them too. Throughout this time probiotics have helped me with the C, upper left quadrant pain  and wind that the zantac seems to have produced! And of course all the help from you guys. Will keep you posted Whitepaw on life post-zantac!
    • Ennis, can you tell us how to tell the difference between a UC flare and a glutening? It must be confusing for folks diagnosed with both to know at first which it is that is happening.
    • i ended up with dairy intolerance over 10 years ago, and celiac over 4 years ago, then this year got ulcerative colitis diagnosis.

      Dairy issues are caused by the fact the enzymes to digest it are produced by the tips of your villi, these are damaged first and most by the disease and you end up with dairy intolerance. Some people can add it back after a few years of healing. Other allergies and intolerance issues will also develop the longer your on gluten.....it will really just shorten the list more, as damage ramps up, digestive issues arise, and your body starts confusing other foods as a culprit and developing allergies.

      Your UC complicates things and is honestly going to make you much madder then the Celiac as per its flare ups. UC common triggers are gluten, soy, dairy, and in some cases like mine it is triggered by carbs and sugars like glucose and fructose.....yeah I had to go grain free and change to a nut, seed, leafy low carb veggies and egg white diet.
      Since you can not have nuts but do not mention meats I can say your lucky. I developed a issue where I can not digest meats due to my damage. I might suggest you look into a keto/paleo diet. Where you eat meats, eggs, leafy greens. a higher fat/protein diet.

      Now after 8 months on this diet I am seeing even more improvement and had have several issues resolve and am putting on weight.
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