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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Please Help (Elimination Diet)
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Mennoknight    3

Hello,

Beginning in August of 2009, I have had a small-fiber neuropathy, diagnosed by biopsy, that caused pain in my hands and feet, pretty intense pain. Beginning in spring 2011 and then worsening in January 2012, I developed significant joint pain that persists to this day, though perhaps the edge is off a bit and I am much more mobile. I have pain in my shoulders, arms, wrists, hands, fingers, hips, knees, and sometimes ankles. Bizarrely, the neuropathy abated enormously after I took vitamin B12 supplements for a bit... I've heard that it's not supposed to work that fast, but I take what I can get.

In any case, I was diagnosed by endoscopy and then blood test and the gene test for celiac in February of this year. My pain has remained significant, despite strict avoidance of gluten. While I never had GI symptoms in the past, I now get a few when I have accidents, but they have always been very minor accidents. I read on these boards all the time, and I'm aware of how many places gluten hides and how dangerous even tiny amounts can be.

In any case, I have tried elimination diets many times, and they have never helped. Usually I've avoided everything but vegetables aside from nightshades, fruits aside from citrus and a couple others, and chicken, and I've generally avoided everything for a couple weeks. I never improve. I'm wondering, can I basically rule out food as the source of my issues, or should I do something even more dramatic, like fasting for a week or something like that? I just want to know I've done everything I can. The pain is terrible, and it has been 3.5 years and I've cancelled many life plans because of the disease. It's rough at 23 :(

Any other suggestions? Without digestive symptoms, is it plausible that a food would cause pain like this?

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GottaSki    459

The damage from lack of proper digestion/absorption of nutrients is very tough to recover from. While I can't be certain food is the cause of your symptoms - it is very telling that you improved drastically with B12 supplementation. Have you had recent nutrient testing? Perhaps you are low in other vitamins, minerals or amino acids. It is possible that you are still healing from the celiac damage - this can take a very long time.

I'm not understanding when you say that you have tried elimination diets many times. Did you mean you removed everything except for select fruits, vegies and meat for several weeks more than once? If so, perhaps you should try it for one longer period of time.

I tried eliminating groups of foods and singular items for a very long time before I removed all grains, dairy, eggs, legumes, nightshades, nuts, seeds at once. This is not easy, but it was the only way I found what I was intolerant of. I waited about a month and then introduced one food item at a time - I would trial an item for one day and then go right back to base foods for at least three days...often a week so that each trial was conducted on the same playing field. I had very strong and different reactions to most of the foods I trialed. About a third of the way thru this experiment I limited my trials to Friday afternoons so I didn't miss work from severe reactions.

I'd say it is worth one more try if your elimination diets have been short in duration, but also very important to have your nutrient levels checked.

Hope you find a solution very soon :)

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cahill    189

A TRUE elimitation diet is extreme.Not something to enter into lightly. And you are talking months not weeks for an elimitation diet .

When I did my elimitation diet I elimitated EVERYTHING Inclucding coffee ( execpt 5 foods ,,,,,rice , ground lamb, cabbage,peaches and peas and water to drink ) for 2 months before even considering starting to add foods back ,,,one at a time ..........

Nothing else and I do mean NOTHING ELSE was consumed for about 2 months before I even considered starting to add foods back.

Then when testing a food it was consumed in this purest form and I waited as long as two weeks to make sure I did not react before going on to the next food. Single foods not food groups, It is a very long pain steking procress but worth it in the end .

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What I did for my elimination/challenge diets is to eliminate only one food for one week and then add it back without changing anything else for another week, meanwhile tracking my symptoms. If I noticed that the food had a bad effect, I wouldn't eat it anymore. Repeat. It took a long time. This was more manageable for me than eliminating a whole bunch of things and it did work to yield a safe diet for me.

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Persei V.    8

One food at a time is better, IMO. Not to mention, keeping a food log with accurate descriptions of symptoms can help a lot, depending on your time of reaction. I for one don't take longer than half an hour to react, bloating always shows up when I eat something I shouldn't. So I know it is something I just ate. In your case, maybe you take four or five hours to react, then you should not look in the meal you ate before, but the one before that, for example.

It's tiresome, long and frustating (I would know, I'm on grain-free trial week) process, but it's all worth in the end, so good luck.

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GottaSki    459

Removing one food at a time - one week at a time with symptom log is a fantastic way to go if it works.

Sadly, for me, it provided no clear reactions which is understndable given I was eating many gluten-free meals that incuded several foods that I was intolerant of. My go-to lunch at work was quinoa with red bell pepper and peas with a few handfuls of peanuts - turns out I was intolerant of them all.

If you have tried the one food at a time method without having clear reactions - I do suggest the full elimination method. Many go with 4 or 5 safe foods that often include rice and peas - a grain and a legume - for me this would not work as I would have been intolerant of half of the "safe" foods. Research elimination diet for autoimmune disease - this is how I found the correct safe foods for me.

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GFinDC    609

Eliminating only one food a a time is fine if you only have one food intolerance. But if you have several food intolerances it is very slow process and may not work. If you react to eggs and soy the same way and eliminate only eggs, but continue to eat soy, then your symptoms could stay the same. And then you would think eggs are ok. But that would be a mistake.

If you start with only a few foods, (5 is workable) then you add foods slowly one at a time you get more clear results. Plus this is faster than removing one food at at time.

When I quit soy, it took a month and a half to get over some of the symptoms. Your body can react fast, but it can also react slower. You need to give things time to work out, and not be in a rush to add foods back. Eating the same thing over and over is not so bad. You can make various versions of a food with minor changes by combining things differently, or cooking differently. Rushing the process just doens't work.

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cahill    189

Eliminating only one food a a time is fine if you only have one food intolerance. But if you have several food intolerances it is very slow process and may not work. If you react to eggs and soy the same way and eliminate only eggs, but continue to eat soy, then your symptoms could stay the same. And then you would think eggs are ok. But that would be a mistake.

If you start with only a few foods, (5 is workable) then you add foods slowly one at a time you get more clear results. Plus this is faster than removing one food at at time.

When I quit soy, it took a month and a half to get over some of the symptoms. Your body can react fast, but it can also react slower. You need to give things time to work out, and not be in a rush to add foods back. Eating the same thing over and over is not so bad. You can make various versions of a food with minor changes by combining things differently, or cooking differently. Rushing the process just doens't work.

Exactly

I had so many intolerances at that point in time there would have been no way to single them out without a true elimitation diet .

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cahill    189

One food at a time is better, IMO. Not to mention, keeping a food log with accurate descriptions of symptoms can help a lot, depending on your time of reaction. I for one don't take longer than half an hour to react, bloating always shows up when I eat something I shouldn't. So I know it is something I just ate. In your case, maybe you take four or five hours to react, then you should not look in the meal you ate before, but the one before that, for example.

It's tiresome, long and frustating (I would know, I'm on grain-free trial week) process, but it's all worth in the end, so good luck.

some things I react to all most immediately , some things it takes days to react, most times my symtoms last for weeks after exposure ,some time I react all most immediately AND still days later .

a one week trial is not near long enough.

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ciamarie    23

I don't know what your diet is at the moment, but I wouldn't rule out it still being a diet issue as others have noted. 2 things I thought of when reading your post were either A.) Nightshades (i.e. potatoes, all peppers, tomatoes) or B.) GMO foods. In the genetic roulette movie, it showed that some doctors prescribe a GMO free diet and get good results.

If you're not familiar with that issue, there is a GMO free shopping guide available: http://www.nongmoshoppingguide.com/

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Persei V.    8

some things I react to all most immediately , some things it takes days to react, most times my symtoms last for weeks after exposure ,some time I react all most immediately AND still days later .

a one week trial is not near long enough.

Then take whatever time is necessary for you :lol:

Your reactions not being regular turns things kind of difficult, I am not going to lie, but I'm sure you can do it.

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cahill    189

Then take whatever time is necessary for you :lol:

Your reactions not being regular turns things kind of difficult, I am not going to lie, but I'm sure you can do it.

yes I can and did :)

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Mennoknight    3

The elimination diets I've done are of both kinds; I've avoided particular foods (usually common allergens) for some weeks at a time to see if I improve, and I've also done highly restrictive, generally all very basic foods diets for a few weeks at a time. I've never gone a month, so maybe I need to try that. Nothing has helped.

So here are some difficulties I run into in my mind:

I don't have any digestive issues at all, just constant pain. It doesn't seem to worsen when I eat particular foods or even really go down, except very slowly in the 8 months since I stopped eating gluten. If my pain is decreasing naturally (just far too slowly), wouldn't that suggest that I don't have a food sensitivity keeping it up?

Also, if practically any food could be the culprit and there are likely multiple culprits, isn't it almost impossible? To truly figure out based on some things I read on this forum, I'd need to eat only five foods for a month or so, and since presumably any one or two of those could complicate things for me, I'd need to try a different five foods for another month or so, and maybe even either 1. use fewer foods or 2. systematically mix and match other foods to make sure I've tried only eating small numbers of combinations of foods for long periods of time. I don't know, I guess it just feels like it's hopeless once I get anywhere past the challenge of only eating vegetables for several weeks. In any case, how often do food sensitivities lead to permanent, stable, high levels of pain, rather than either digestive issues or other short-burst side effects? I see that everyone has these sensitivities, but people say so little about the symptoms.

Thanks for the answers, your experiences are really interesting to learn from.

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GottaSki    459

I was diagnosed with Celiac Disease at 43. While my digestive symptoms improved within the first months gluten-free - my joint/muscle pain, brain fog, memory issues, insomnia, fatigue, etc ALL got worse! Hence the search for other intolerances for over two years. The puzzle is often tough to figure out when many intolerances are in play.

For me different foods cause different reactions. If you'd like, PM me and I'll send you the food/symptom log from my final/successful attempt to identify my problem foods.

That you are improving is great - it very well could be that you simply need more time gluten-free to heal. If your symptoms are manly pain, fatigue etc. I do suggest you look at removing all legumes, nightshades and possibly grains.

Researching Lectins and Autoimmune Disorders is what the answer was for me -- as you can see by other posts - not all Celiacs are alike. All you can do is keep trying to analyze your diet until you find what works for you.

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cahill    189

The elimination diets I've done are of both kinds; I've avoided particular foods (usually common allergens) for some weeks at a time to see if I improve, and I've also done highly restrictive, generally all very basic foods diets for a few weeks at a time. I've never gone a month, so maybe I need to try that. Nothing has helped.

So here are some difficulties I run into in my mind:

I don't have any digestive issues at all, just constant pain. It doesn't seem to worsen when I eat particular foods or even really go down, except very slowly in the 8 months since I stopped eating gluten. If my pain is decreasing naturally (just far too slowly), wouldn't that suggest that I don't have a food sensitivity keeping it up?

Also, if practically any food could be the culprit and there are likely multiple culprits, isn't it almost impossible? To truly figure out based on some things I read on this forum, I'd need to eat only five foods for a month or so, and since presumably any one or two of those could complicate things for me, I'd need to try a different five foods for another month or so, and maybe even either 1. use fewer foods or 2. systematically mix and match other foods to make sure I've tried only eating small numbers of combinations of foods for long periods of time. I don't know, I guess it just feels like it's hopeless once I get anywhere past the challenge of only eating vegetables for several weeks. In any case, how often do food sensitivities lead to permanent, stable, high levels of pain, rather than either digestive issues or other short-burst side effects? I see that everyone has these sensitivities, but people say so little about the symptoms.

Thanks for the answers, your experiences are really interesting to learn from.

The symptoms are different for everyone .

For ME,

Gluten gave me The big D and abdominal pain. Now if I experence CC I get EXTREME tummy pain, EXTREME abdomenal pain,EXTREME abdomenal PAIN and EXTREME D.

Soy causes neurological symptoms ( migraines, dizziness, brain fog, ringing in my ears,numbness of face hands,feet ,,ect.....), and THe big C and rectal bleeding

Corn causes gut pain and a feeling like there is a big hole( a empty feeling) in my abdomen

Nightshades caused a burining from my throat to my rectum, joint pain and gut pain

oatmeal ( yes even gluten free oatmeal) causes a pain in my upper back ( across my shoulder blades) and gut pain

** note gallbladder is gone so it is not the gallbladder even though the pain was in the same area you would experence gallbladder pain )

eggs ( when I could not tolerate them) burned my throat and upset my tummy

most veggies and fruits caused tummy pain,abdomenal pain and D or C

and ,,, well you get the idea

everyone is differenct

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If my pain is decreasing naturally (just far too slowly), wouldn't that suggest that I don't have a food sensitivity keeping it up?

If your pain is decreasing naturally it might just take more time. If your elimination diets have turned up nothing, you may be better off being patient and waiting for the healing process. At a later point if your pain is still a problem and stops decreasing, that might be the time to look for another cause.

It can take a long time to heal. It is taking me years, not months. Five years later, I think that I am still healing, though I am much better than I was.

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Kansas    5

Everyone is different. If I get cc, I have different reactions everytime, plus some of the old ones as well. And the reaction/healing time is different everytime as well. I don't know what I think about being super sensitive, I react with joints hurting and skin problems when I try using things such as MacCormick's Vaniila that is labeled gluten free, or white vinegar which is supposed to be safe. I am 4 years into this journey, I only eat what I make, and then the ingredients have to be 100 percent gluten free. I was in pretty bad shape four years ago, and now at 62, I feel great, but only because I am very, very, picky about what I injest. Whole foods and a few of the certified gluten free foods, no dairy, no soy, works for me!

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