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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.

Elimination Diet So Far, Is It Gluten Or Wheat?
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21 posts in this topic

I just finished eating a bunch of rice bread/cake products, still a few more to go but I think I have enough "data" along with other stuff I have tried.

So here are the results, all references to pain are abdominal pain 1-2 hours after eating (mind that I can eat ALL of these without pain prior to Christmas 2011):

Kraft Mac & Cheese (Mac only) -> Severe pain, nausea, vomiting, thrashing, passing out, ER

Raw semolina (Durum wheat) -> Severe pain, nausea, thrashing, passing out, ER

Slice of whole wheat bread -> Severe pain, nausea, thrashing, passing out, ER

Quarter plain sugar doughnut -> Severe pain, thrashing, nausea

Conchea (Mexican cream decorated bread) -> Severe pain, thrashing, nausea

Domino's pizza regular crust (not the "gluten free" version) -> Severe pain, nausea

Cheez-Its (crackers) -> Severe pain, nausea

Large Danish -> Severe pain, nausea

Asian Danish -> Moderate pain, nausea

Asian coconut bread -> Moderate pain, nausea

Small Danish -> Minor pain

Rice bread with 20% gluten -> Trace pain (uncertain)

Rice flour cake 0% gluten -> NO REACTION

White rice -> NO REACTION

Corn flour tortillas -> NO REACTION

Mini-Wheats cereal -> NO REACTION

Raisin Bran cereal -> NO REACTION

Gluten viscous (lab sample) -> NO REACTION

Wheat viscous (lab sample) -> NO REACTION

Is the gluten-content in proportion to those products with relationship to the pain? When they gave me raw gluten, I had no reaction.

Mind that the Endoscopy and Pillcam I had showed NO damage to the intestines and were NORMAL, biopsies were also NEGATIVE for damage and Celiacs. Celiac profile bloodwork was also NEGATIVE.

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Wondering if perhaps the way it is being processed is what makes the difference. Perhaps the gluten in Raisin Bran or Wheat Chex is so refined that it isn't bothering you. Odd that raw gluten didn't cause a reaction either though. I don't know...I can see why you are stumped by this!

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How much time did you leave between each experiment? Sometimes the reaction can be delayed, so if you ate the mini-wheats and got no immediate reaction, the reaction could have been present a couple of days later, which may have overlapped another gluten trial.

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Have you spent any significant amount of time completely - as close to 100% as you can get gluten-free - no gluten from wheat, barley or rye from any processed food?

If I am remembering your posts this weekend, you were eating gluten on Friday then picked up loaves of gluten-free and gluten-lite items at a specialty bakery and trialed them both on Saturday and Sunday.

Unless you give your body a break from ALL gluten sources your experiments are not going to provide very accurate information.

I'm not familiar with this test:

Gluten viscous (lab sample) -> NO REACTION

Wheat viscous (lab sample) -> NO REACTION

Did you ingest these to watch for reaction? Were you gluten-free when you did this trial? Were they trialed on the same day?

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Right, staying gluten free needs to be a couple weeks at least for your test.. A month or more would be better. The immune system reaction kicks in quickly but doesn't stop quickly. So you have to allow it time to die down before testing something else. It would be much simpler to stop all gluten for 3 months and then add one food back in for a week as a test. When you are eating processed foods you are consuming many chemicals and ingredients and it is hard to identify one of the many choices that could be causing a symptom. You need to simplify the playing field to identify the actors. So fewer food ingredients is a must if you are serious about solving the problem. One or 2 out of 15 is much easier to figure out than 1 or 2 out of 100 ingredients.

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I always get a reaction 1-2 hours later, it's very clear and immediate so no guessing on that.

The lab samples were tested by my allergist, on my skin, and he said it would be the same as if I ate it (but I doubt it)?

I was gluten-free earlier in the Spring but it did not help.

All of these items were tested from Christmas 2011 to now, though I had breaks in between where I was gluten free (during my endoscopy and pillcam, which probably explains why they were negative?).

Yes I got rice-bread/cakes over the weekend, those were listed as well, minor/trace pain with the ones that had a little gluten in it (but it was hard to tell).

I think it kind of looks like gluten may be the cause but there are some contradictory things, basically the cereals (Raisin Bran and Mini-Wheats) that don't give me pain.

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Skin tests would not be the same at all. Sounds like he was testing for an allergic reaction, which is completely different from either celiac or gluten/wheat intolerance.

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How long were you gluten free in the Spring? Some people don't see any results from a gluten free diet for weeks or even months, so you may not have tried the diet for long enough to see a difference.

It could be a reaction to another ingredient. Cheeze-its and Dominos crust both have soy ingredients, but mini-wheats and raisin bran don't. Soy is often present in processed foods, but that wouldn't explain the semolina flour though. Did you eat the flour with anything?

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I just boiled semolina with water, to make porridge, so it was plain. I'm sure semolina was the most painful.

I also tried pastas like mac & cheese (but without the cheese) and it really hurt too.

I was gluten free for about 3 months, which happened at the same time I had the endoscopy and pillcam, which I'm worried that it probably also yielded false-negatives.

My allergist said it would be the same, testing on skin and eating it.

But if it were an intolerance, why all of a sudden?

Could there be a another underlying cause that gluten is highlighting (with the pain) but is not really the cause?

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I think many of us have intolerances that came on all of a sudden. No real explanation as to why, although my doc suspected it was a major stressful event that triggered mine.

Did you do all of these tests over the weekend? Or are some of the things you listed from previous experiences? To do a challenge properly you need to remove all traces of the bad stuff (which would mean 2-4 weeks of no soy, dairy, gluten, sugar, alcohol, and possibly nightshades and all grains) then reintroduce new foods one at a time, allowing 3 days between foods. And if you have a reaction you have to have 3 clean days before starting a new food.

You may have delayed reactions that you're not aware of. I have some gluten foods that give me an instant reaction and some that dont come on until the next day.

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There is no ryme or reason behind it. At this moment, i still can't get why your putting yourself through all that hell.

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I was gluten free roughly from Feb to Apr 2012, I had tests and bloodwork done about that time (not over one weekend but over several weeks). The endoscopy and pillcam were done while gluten free.

I guess the reason I'm doing this (keep re-challenging bread) is that all the tests are negative and I have no reason to suddenly have this kind of reaction to it. Especially if my drs and tests say I'm "so healthy" then why all of a sudden do I eat bread (which I have always eaten my entire life) cause so much pain, thrashing, passing out, it does not make sense.

If the endoscopy test showed damage to my intestines, or my Celiac profile was positive, or something, then I can accept it, but it's not.

It's like all of a sudden you drop an apple and suddenly it falls up into the sky, and before then it's always fallen to the ground, and you have to figure out why. Anyone else who drops an apple the apple still falls to the ground. But if I drop the apple, it falls up.

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I was gluten free roughly from Feb to Apr 2012, I had tests and bloodwork done about that time (not over one weekend but over several weeks). The endoscopy and pillcam were done while gluten free.

I guess the reason I'm doing this (keep re-challenging bread) is that all the tests are negative and I have no reason to suddenly have this kind of reaction to it. Especially if my drs and tests say I'm "so healthy" then why all of a sudden do I eat bread (which I have always eaten my entire life) cause so much pain, thrashing, passing out, it does not make sense.

If the endoscopy test showed damage to my intestines, or my Celiac profile was positive, or something, then I can accept it, but it's not.

It's like all of a sudden you drop an apple and suddenly it falls up into the sky, and before then it's always fallen to the ground, and you have to figure out why. Anyone else who drops an apple the apple still falls to the ground. But if I drop the apple, it falls up.

-sigh-

You need to understand that there is no definenent answer for anything. One day your body might be okay with something and the next it decides it no longer likes it. Regardless of how many "Challenges" you do, it seems that the results are the same. It is like someone who has loved seafood all their life suddenly has a major allergy with it for no reason and they have to give it up. Do they miss it? Sure, but as time passes, they no longer want it. I had a tomato allergy come out of no where on me. There was no explination for it.

Part of me wants to think you are in somewhat of a denail about this.

I would suggest at this point in time while you are messing with gluteny things to go and get retested via blood test and an endo. Pill cams, unless in the most serious cases where the damage is visible to the eye, cannot tell.

Gluten is a protien found in wheat and other grains. However, for someone who is intolerent to it, they cannot eat wheat, rye, or barely, but generally fine with oats, corn, rice, etc.

From what you've told us, you have problems with bread/pasta even though you can eat the raisin bran.

Bread in its basic form is wheat flour, yeast, water and several other ingredients.

Pasta generally are just flour and water.

Raisin bran is:

Whole grain wheat, sugar, raisins, rice, wheat bran, whole grain oats, brown sugar syrup, glycerin, corn syrup, contains 2% or less of salt, malt flavoring, modified corn starch, molasses, palm oil, cinnamon, honey, natural and artificial flavor, BHT for freshness.

The only difference i see is perhaps the cereals are more refined.

However, i wouldn't push it and keep trying just to see. Its going to get to the point where you will most likely end up in the hospital due to pain.

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Right, but I have to find out cereals (mini-wheats and raisin bran) do not cause pain, I ate them this morning and still feel nothing.

Also, some danishes hurt, while others do not, I have to figure that out too.

If I did not push so hard to trying to figure something out, I may never have tried the elimination diet back in Jan and never have found out that it was bread that caused my pain and I probably would not be here today because I could not eat food.

That is why I want to keep eliminating and trying different things until I find out exactly what part of gluten or wheat is causing this and why it is causing this. People's metabolism and pain to foods don't just suddenly happen over night. I ate so many pizzas the week before Christmas 2012 and nothing happened, then just one day after it becomes something that sends me to the ER, that requires studying.

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When you're eating gluten do you only feel bad for the few hours after when you're having the extreme pain and nausea, or do you feel pretty lousy all the time?

If you had all the tests done while you were gluten free they were pointless unfortunately.

You really have two choices right now - either try the elimination diet, and accept that if it works you may never have a medical diagnosis but you will have answers one way or the other. Or, you can go back to eating gluten regularly, wait a few months, and then repeat the tests to try and get a medical answer.

If you are going to do the elimination diet, it would be helpful to keep track in a log or diary so you can look for patterns.

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I narrowed down my problem (is it wheat or gluten) by seeing if I reacted to barley malt in granola.. I did so gluten causes my reaction. Now to continue to eat it until I hear if my Endo will run the blood work panel on the 22nd

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When you're eating gluten do you only feel bad for the few hours after when you're having the extreme pain and nausea, or do you feel pretty lousy all the time?

Well for example, if I eat pastas or pizzas, I first feel a strange "echoy radiance" around my whole body, particularly around my head about an hour after eating.

Then a few minutes later I get a sharp pain in my upper abdomen (always the same place), but only for a few seconds.

Then its followed by 3-8 hours of horrendous pain until I pass out. During which I sometimes thrash, like a seizure, but I'm conscious of most of it so I don't think it's a real seizure.

The next day I feel like I just had major surgery or a bunch of aliens went into my body and had a war or something, the pain afterwards is minor, but dull and nauseating for the next day or two.

Recently I found that Elavil relieves all of the dull pain and nausea the day after. I'm on it right now. Elavil was the most significant find to this day and I'm still not sure what it means.

I doubt I can find a doctor to do the endoscopy again any time soon, but I will try later on after other tests have been done (I'm still having a carcinoid test and redoing Celiac profile bloodwork).

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where in your upper abdomen?

Have you had your gallbladder checked?

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I totally get it. You need to know what is causing the problem, but when you don't have enough time between your trials you cannot accurately define the cause. I have more physical reactions to gluten when I have not given my body a rest. And sometimes things that I believe do not contain gluten (although I don't know about CC) cause a similar reaction when I am healing from a recent glutening.

Just my opinion...

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It's just about my belly button, in a "C" shape (as if it were written normally when you are looking at me). It's about 5cm by 4cm in size, and it radiates to the back, where the kidneys are.

Yes I had an US of the gallbladder, I saw it, it was totally clean. There was a 4mm kidney stone on the US, but later I had a CT of the kidney and it appearently was not visualized so we assumed it got flushed.

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It's just about my belly button, in a "C" shape (as if it were written normally when you are looking at me). It's about 5cm by 4cm in size, and it radiates to the back, where the kidneys are.

Yes I had an US of the gallbladder, I saw it, it was totally clean. There was a 4mm kidney stone on the US, but later I had a CT of the kidney and it appearently was not visualized so we assumed it got flushed.

US don't do much for the gallbladder. Mine showed up clean. The HIDA scan tests its function (contration and emptying), if its below 35% they'll remove it. Mine was at 5%.

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