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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.
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Will This Ever End?
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21 posts in this topic

I've been gluten free for four months, whole foods for the past two weeks. No change. Still as bloated as when I first started. It's depressing. It's always the same no matter what I eat or don't eat. I have had bloating for the last 6-7 years with not one hour of relief. Blood test for celiac was neg, colonopscopy was perfect. Dr. just said IBS and sent me on my way. I asked to go to an allergest, he said I didn't need to,he could do it with a blood test. That also came back neg. I have to say, He didn't really try too hard. I'm going to just keep eating whole, I don't know else to do.(And start wearing maternity shirts)

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You just have to be patient. Also you may need to cut out dairy. It could be worse trust me :( I know it's frustrating but your tummy needs time to heal from all the damage. I hope it gets better for you soon!

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You just have to be patient. Also you may need to cut out dairy. It could be worse trust me :( I know it's frustrating but your tummy needs time to heal from all the damage. I hope it gets better for you soon!

Thank you, I cut out dairy when I started the whole food diet, soy too. At least my face doesn't swell any more.

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Thank you, I cut out dairy when I started the whole food diet, soy too. At least my face doesn't swell any more.

Well, if you keep up with an elimination schedule surely you'll stumble across what triggers your bloating.

Corn is a big culprit. I've heard quite a bit about swelling regarding salicylates and amines. Nightshades are a common group.

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Well, if you keep up with an elimination schedule surely you'll stumble across what triggers your bloating.

Corn is a big culprit. I've heard quite a bit about swelling regarding salicylates and amines. Nightshades are a common group.

I know I read it before, but again...what are salicylates,amines,and night shades. thanks

Also does corn go as any other names in ingreds.

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I know I read it before, but again...what are salicylates,amines,and night shades. thanks

Also does corn go as any other names in ingreds.

Bartfull is the corn expert. I think there was a corn post earlier, check there.

Google salicylates for lists. Here's one I think us decent. http://fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/salicylates

Amines - I don't have a link. Search this site for it. I know there were lots of posts at one time.

Here's a link about nightshades - it's about arthritis but the list should work. http://arthritis.about.com/b/2006/09/25/nightshade-vegetables-should-people-with-arthritis-avoid-nightshade-foods.htm

Some of these eliminations are pretty intense. You can't drop all of them at once (I wouldn't think) and still have much to eat. Think about how you want to proceed.

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It is extremely frustrating, but it will get better. You are doing what you can. By adjusting your diet and asking questions you will figure this out. That your face isn't swelling is a big improvement...give your gut time - it has been bloating for a long time, it may take some time to heal.

You are not alone - it took many months for my digestive symptoms to improve - it was nearly a year before I had a reduction in my joint/muscle pain, fatigue, brain fog, etc. It is often tiny improvement followed by no improvement for a long time. Eventually the tiny improvements add up - make a list of any improvement - changes in skin, hair, nails, gums were some of my first improvements and I had pretty good skin, hair and nails before diagnosis, but poor gums no matter how much care they received over the years.

Hang in there - I'm hopeful your symptoms subside sooner rather than later :)

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Bartfull is the corn expert. I think there was a corn post earlier, check there.

Google salicylates for lists. Here's one I think us decent. http://fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/salicylates

Amines - I don't have a link. Search this site for it. I know there were lots of posts at one time.

Here's a link about nightshades - it's about arthritis but the list should work. http://arthritis.about.com/b/2006/09/25/nightshade-vegetables-should-people-with-arthritis-avoid-nightshade-foods.htm

Some of these eliminations are pretty intense. You can't drop all of them at once (I wouldn't think) and still have much to eat. Think about how you want to proceed.

You have been very helpful, I found a pretty good link on night shades, now I'll check out the rest. I wonder if I'm intolerant of air and water.
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Dairy is possibly the biggest culprit. That you noticed decreased facial swelling in two weeks is significant. I would go another 2 -4 weeks and see where the bloating stands before eliminating another food group though. It can take up to 6 weeks to clear casein protein from your body I have read, and I know for me that was the case.

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You have been very helpful, I found a pretty good link on night shades, now I'll check out the rest. I wonder if I'm intolerant of air and water.

Surely not :). Hang in there, you'll figure it out.

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stick to whole foods, weeding out ANY processed foods at all.! AND digestive enzymes, bloat could be the food not being digested properly and sitting there and "fermenting", and what do ya get when someting ferments? think beer/bread, GAS!

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Bossley, here is something I posted on a different thread just yesterday. If you need any more advice about corn I'll be more than glad to help.

"Corn has been a real problem for me. It is in EVERYTHING! There are several corn allergy forums on the web that you should research. Even though we have an intolerance to corn rather than a true allergy, there are a lot of intolerant folks on their forums, and you will find lists of foods and ingredients to watch out for.

Corn is not one of the "top eight" allergens so they don't have to disclose it when corn is used in processing something. It might be used for example (IS used actually) to vitamin fortify things like milk and cereal and rice. It is called a "carrier". It is also the usual carrier for "flavoring", "natural flavor", and often "color".

Corn is in the vegetable wash they use on bagged ready to eat salads and those baby carrots you see in bags at the store. Corn starch is the filler in almost all medications. (I have to have meds made at a compounding pharmacy.) The clear plastic bottles individual servings of water comes in are now made with corn.

If you have skin problems, be careful because some toilet paper, paper towels, facial tissue, and even paper plates have corn in them. Tea bags usually have corn in them. (They use it to help dry the wet paper and to keep it from sticking together.)

After 14 months gluten-free and corn free, I finally got corn starch back. I still couldn't tolerate corn meal and I never even tried corn syrup or corn oil. But then I got glutened by some cross contaminated rice, and it has set me back to square one. As crummy as getting glutened made me feel, the fact that I have lost corn again is the worst part, simply because it is so hard to avoid."

Another thing I forgot to mention in yesterday's post is that those soaker pads you find underneath meats from the grocery store are full of corn starch so you need to wash the meat well before you cook it. Of course you can't wash hamburger, so if you can't find it packaged differently, your best bet is to find a source of ground bison. It's much better for you than hamburger anyway - no hormones, antibiotics, nor any of the other garbage you find in beef nowadays.

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Bossley, here is something I posted on a different thread just yesterday. If you need any more advice about corn I'll be more than glad to help.

"Corn has been a real problem for me. It is in EVERYTHING! There are several corn allergy forums on the web that you should research. Even though we have an intolerance to corn rather than a true allergy, there are a lot of intolerant folks on their forums, and you will find lists of foods and ingredients to watch out for.

Corn is not one of the "top eight" allergens so they don't have to disclose it when corn is used in processing something. It might be used for example (IS used actually) to vitamin fortify things like milk and cereal and rice. It is called a "carrier". It is also the usual carrier for "flavoring", "natural flavor", and often "color".

Corn is in the vegetable wash they use on bagged ready to eat salads and those baby carrots you see in bags at the store. Corn starch is the filler in almost all medications. (I have to have meds made at a compounding pharmacy.) The clear plastic bottles individual servings of water comes in are now made with corn.

If you have skin problems, be careful because some toilet paper, paper towels, facial tissue, and even paper plates have corn in them. Tea bags usually have corn in them. (They use it to help dry the wet paper and to keep it from sticking together.)

After 14 months gluten-free and corn free, I finally got corn starch back. I still couldn't tolerate corn meal and I never even tried corn syrup or corn oil. But then I got glutened by some cross contaminated rice, and it has set me back to square one. As crummy as getting glutened made me feel, the fact that I have lost corn again is the worst part, simply because it is so hard to avoid."

Another thing I forgot to mention in yesterday's post is that those soaker pads you find underneath meats from the grocery store are full of corn starch so you need to wash the meat well before you cook it. Of course you can't wash hamburger, so if you can't find it packaged differently, your best bet is to find a source of ground bison. It's much better for you than hamburger anyway - no hormones, antibiotics, nor any of the other garbage you find in beef nowadays.

I think I'll just stick to ice cubes.I don't like food any more.

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I know how you feel! I have often wished I could just get my nutrition intraveinoulsy so I never had to eat at all. But right now I'm living on organic sweet potaotes and well washed meat. Those two things are where most of my nutrition is coming from. I used to really love sweet potatoes but when you eat them every single day you tend to get sick of them.

So I keep reminding myself that eating is a necessary bodily function. I try to forget that it was once a pleasurable experience. I just eat what I must, get it out of the way, then get on with the parts of life that still ARE pleasurable.

And I am thankful that eating such a restricted diet ALLOWS me to feel well enough to enjoy the other good parts of being alive. (Big talk from someone who feels like crying right now. Maybe we can hold each other up through this.)

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I know how you feel! I have often wished I could just get my nutrition intraveinoulsy so I never had to eat at all. But right now I'm living on organic sweet potaotes and well washed meat. Those two things are where most of my nutrition is coming from. I used to really love sweet potatoes but when you eat them every single day you tend to get sick of them.

So I keep reminding myself that eating is a necessary bodily function. I try to forget that it was once a pleasurable experience. I just eat what I must, get it out of the way, then get on with the parts of life that still ARE pleasurable.

And I am thankful that eating such a restricted diet ALLOWS me to feel well enough to enjoy the other good parts of being alive. (Big talk from someone who feels like crying right now. Maybe we can hold each other up through this.)

I'm still sort of new to this and you know so much, but I,m there for you if you just want to vent.

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Hi Bossley,

A few things I can suggest that might help. Try taking some Betaine HCL with pepsin when you eat your meals. It is stomach acid in a pill and can help to digest your food if you are low on stomach acid, as many are. Stomach acid decreases naturally as we age, just like thyroid hormone production and sex hormones do.

I suggest you also try DGL (deglysterenized licorice) and mastic gum. Just in case you have an h.pylori infection as they estimate 50% of people do. And the other tips below are listed just in case you mlssed any of them. Hopefully something will help. Two weeks on the whole foods diet is not very long, but you said you have seem some results already. So definitely keep it up as it takes time for our bodies to heal and adjust.

If you don't get better in a month I suggest you try an elimination diet.

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

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Hi Bossley,

A few things I can suggest that might help. Try taking some Betaine HCL with pepsin when you eat your meals. It is stomach acid in a pill and can help to digest your food if you are low on stomach acid, as many are. Stomach acid decreases naturally as we age, just like thyroid hormone production and sex hormones do.

I suggest you also try DGL (deglysterenized licorice) and mastic gum. Just in case you have an h.pylori infection as they estimate 50% of people do. And the other tips below are listed just in case you mlssed any of them. Hopefully something will help. Two weeks on the whole foods diet is not very long, but you said you have seem some results already. So definitely keep it up as it takes time for our bodies to heal and adjust.

If you don't get better in a month I suggest you try an elimination diet.

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

I looked up elimination diet to see how to go about it and there are so many different ways. How would you go about it?

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I can say I TOTALLY feel ya! i've been in the same boat for 4 years and there have been very few moments of relief. You just need to keep at your diet. I'm currently cutting out dairy, beef, fish and the gluten. I'm still suffering but every now and then there are moments. I'm in the process of getting a new doctor and allergist. Do you watch your cross cantamination? Do you eat in chain places? Do you eat fried food from a common frier in chain places? Do you share food/cooking space with others that are not gluten-free?? A jar of peanut butter could be a good chance for bread crumbs to get into your diet and hurt you. You have to start looking at everything! I do these things and there are still issues so I'm thinking it is something else in my diet as well. I hope this helps a little. If nothing else know someone else is in your boat :)

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I looked up elimination diet to see how to go about it and there are so many different ways. How would you go about it?

There are so many different ways to do this. I tried the FODMAPS elimination diet because I suspected I had problems with fructose. Here's a website: http://www.ibsfree.net She has a book that was a good starting point for me. (Note, it's not a gluten-free diet, so make sure you adjust accordingly). Found out I can't handle fructose, dairy, mannitol, sorbitol, and brown rice as well as gluten. Fun, huh? Took about a month or so on the diet before I had good days.

An elimination diet is a slow, slow process. And frustrating. It is worth it once you find out a basic diet that doesn't bother you. I was down to 17 foods I knew were safe at one point (and several were variations of corn flour products). It's much better now for me, but it took awhile to get there.

Good luck!

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I looked up elimination diet to see how to go about it and there are so many different ways. How would you go about it?

Hi,

The basic idea is to cut down a a bare minimum number of foods in your diet, and then slowly add one food at a time. Starting with 5 foods is good number. Choose foods that you don't think you will have reactions to and that provide good nutrition and can be used in several ways. When you add a food eat it every day for 3 days to see if you have a reactions. Don't add foods that you think you will react to though, add foods that you think are ok for your body. A meat, a couple veggies, and salt pepper are good starting diet. You want to get to a good starting diet before you start adding foods. So you may need to eat your basic 5 foods for a week or two before you start adding.

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Love all the support , nice to know I not alone in the search of good food that isn't covered in corn, wheat , soy, peanuts and fructose. Back to basic cooking:D

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