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
      104,096
    • Total Posts
      920,333
  • Topics

  • Posts

    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
    • Hi.  I have been reading your post and thinking about how my pain was around diagnosis.  It was above the belly button, I think where you are describing.  At the time I assumed I had a stomach ulcer.   I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!).   Going back to the pain, it was a burning feeling.   My doctor prescribed Omeprazole but it didn't touch it.   In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease.   I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs.     I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget. The other thing I had that you mention was that pain between the shoulder blades.  I had that - I felt almost like someone was pushing my shoulders down.  So odd. I get palpitations when I am anemic.    I hope you get some answers soon.  It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.   
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,132
    • Most Online
      1,763

    Newest Member
    Feralgurl
    Joined