Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Elimination Diet So Far, Is It Gluten Or Wheat?
0

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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?

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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).

0

Share this post


Link to post
Share on other sites

where in your upper abdomen?

Have you had your gallbladder checked?

0

Share this post


Link to post
Share on other sites

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...

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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%.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,676
    • Total Posts
      921,696
  • Topics

  • Posts

    • I doubt it. I would think that would be a questions for the company that make them.    But if smoking makes you feel bad....and you are able to quit for several weeks at a time....why go back to it?
    • Hi. I've noticed that after a break of smoking (2-3 weeks) I feel bad, when I begin to smoke again.  Maybe they contain some additives with gluten??
    • Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.   But it seems to "quiver" and do funny things for a bit still. I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed. Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously. It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL. A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.    
    • Good afternoon! I am new to this board and fairly new to researching Celiac Disease, although I had a general idea what it was. My health has become a huge mystery to me, and it's one that I am desperate to solve. The biggest issue right now is horrible, life affecting fatigue. I have been dealing with it for several years now- as many as 5 to 6. It has gotten progressively worse, and nothing at all helps. Sleep apnea has been ruled out. Intestinal issues are something I have dealt with for almost two decades. I'm 45, but I've already had two colonoscopies as well as two endoscopies. My first endoscopy was as a child for persistent, severe stomach pain. My last colonoscopy and endoscopy was two years ago. The only thing that has come from those is an Irritable Bowel type condition and GERD, which is pretty bad. My bowel movements have always been crazy. They can be very normal and healthy to completely crazy. I've had periods of persistent diarrhea to occasional constipation, which is a fairly new thing within the last year. Last week, I went from having diarrhea that morning to hard, round balls of stool by that evening. My most common stools here lately, though, are not quite diarrhea, but more fluffy, large piles. Gas is an ongoing, daily issue for me. I have copious amounts of gas every day no matter what I eat or drink. Most of the gas in non-odorous but it can be very loud. I am currently on a total of 60 mg of Ritalin per day just to function. I often add energy pills, purchased from places such as GNC, because the Ritalin isn't working. Yesterday, I took both doses of Ritalin and two energy pills, and I passed out on the couch after work. I work from 7:30am to 3:30pm, and my work day is nothing too crazy. I try to keep very consistent sleep hours and could easily sleep to 1:00pm or longer if I don't have to get up for something. I sometimes have short periods of energy in the mornings, but that is usually over by noon. The quality of my life is greatly affected. I don't want to go anywhere or do anything because I am way too tired. I'm trying to keep up with my exercising, but that is also a struggle.  I have a history of clinical depression for practically all my adulthood, but it has been very well managed for the last four years. The fatigue is currently causing a great deal of depression, but it is very different from the clinical depression that I use to deal with. When I don't feel sleepy and tired, I don't feel depressed. When the fatigue sets in, I feel very irritable and sad. I realize that the stimulants can cause irritability, but I don't feel irritable or sad when I'm not feeling fatigued.  I've only recently began to explore that the fatigue and the intestinal issues could be related. I have always accepted that I have a sensitive, cooky digestive track. The increasing, unrelenting fatigue is what has lead me to exploring the possibility that everything could be related. I did have blood work last November. My doctor did not test for anything Celiac Disease specific, but she did do a Vitamin D, ferritin level and overall metabolic panel. All of that is normal. My thyroid level is also normal, and I do take thyroid hormone because I had half of my thyroid removed 11 years ago due to what turned out to be a benign thyroid tumor.  I just saw my doctor two weeks ago, and she increased the dosage of my Ritalin. That has not helped at all. She has never mentioned Celiac Disease to me before. I made an appointment for this Friday afternoon to talk about it, but I keep wondering if I'm even heading in a direction that makes sense. I decided to post here for some guidance. I'm sorry this has been so long. I'm not really into cutting something totally out of my diet just to see what happens. I also feel like that if I have something that is poisoning my system, I need a real clinical diagnosis of that. I feel like maybe I'm grasping at straws now and imagining a correlation that isn't there. I am not looking for a quick fix, but right now I have no idea what needs to be fixed. I am open to any information and/or suggestions. Thanks so much!   Jennifer
    • Celiac disease sufferers or those who embrace a life without gluten can check out Canada's Gluten-Free Market when it makes stops in London and ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,673
    • Most Online
      3,093

    Newest Member
    KAN
    Joined