So Very Confused -- Please Help

[Dru]

I just registered for the forum and I am sure that there are answers to similar questions on this board somewhere but I am hopelessly confused at this point and in need of some advice. Here's (the short version of) my (long) story.

I have been having very bad GI related problems since about mid-March. I was on antibiotics in increasingly stronger (an often overlapping) doses beginning the first week January to get rid of a sinus infection that would not go away. The GI trouble began toward the end of the last round of antibiotics. My Dr. told me that I had IBS and put me on meds to make the problem go away. The meds did not help and I went back and was given different meds. Those actually seemed to make my problems worse. I was sent to a GI Dr. who did an upper GI panel where I drank a lot of barium and they took e-rays of my stomach and small intestines. That came back normal. I also was given a stool sample test that came back showing no traces of blood and a celiac blood test that came back with all three things in normal range. My Dr. then sent me to a dietitian to start an elimination diet.

So, now I'm mostly done with an elimination diet and have found out that I am allergic to corn, soy, egg yolk, and possibly to peanuts. I also test positive for a dairy allergy and have not even attempted to add that one back in on the elimination diet because of the problems it causes. When I met with my dietitian the other day she had just come from a training workshop on celiac disease. She looked at the blood testing that my Dr. had ordered and compared it to her notes and told me that he did not do the test for the thing that is most accurate. I'm not really sure which ones he did and what she was looking for, but I can find out if it makes a difference in giving me advice. She also told me to try oats, barley, quinoa, and wheat (in that order) as the last few foods in my elimination diet. She says if I react to those then I have to eat them for at least 6-8 weeks so that I can have a biopsy to test for celiac.

I have only made it through oats so far, but I have not felt this bad in a long time. I ate oats (I used oat flour to make cookies and ate several cookies with each meal) for the past three days and actually left work sick today after only having the cookies at breakfast. I am not sure where to go from here. I am not eating dairy, corn, soy, or egg yolks at all and am not eating any prepackaged foods except for a few gluten free things from the local health food store. The reactions that I had to corn and egg yolk were no where near this bad and I think even soy was not as strong a reaction as oats.

If I react to oats is this a sure sign that I will react to barley and wheat or could I be allergic to oats? If I do react to the other things do I really have to eat them for months in order to have a biopsy for celiac? Could I just get the blood test for the genetic marker and assume that if I don't have the marker than I don't have celiac? If I do have the biopsy is it 100% accurate in diagnosing celiac? Also, is there any chance that I actually have IBS if I have all of these allergies and possibly have celiac?

I know it's a long post. Thanks for reading.

[BRUMI1968]

I can't answer most of your questions, but I can say this: IBS is not a disease - it is an indicator of something wrong. it is not the thing - it is the indicator. Of course you have irritable bowels...WHY is the most important question. It sounds like you're not doing diary, soy, eggs, etc....what else is in the oat flour cookies?

I am not experienced in the realm of testing, really. I tested positive for celiac after not eating wheat for a year - so I was still getting it from spelt (turns out to be a variety of wheat, actually) and oats and packaged foods, though I didn't eat a ton of those. Had you been eating those things prior to the elimination diet? If so, I wonder if this means it would not take as long for you to get it back into your system for testing?????

I hope you the best of luck. It's a tough go at first, figuring out what's wrong, then figuring out all the ins and outs of the diet -- but it is well worth it to stick with it. You've already done lots of the hard stuff - acknowledging something is wrong and trying your best to get to the bottom of it.

[Puffin]

I believe all oats are contaminated with gluten except I believe seeing a from a company in Ronan Montana that claims to be gluten-free.www.amazinggrains.com/

My cousin and I are not able to tolerate even these oats. My list looks like yours but just a little longer. (add sesame seeds, onion powder, and strawberries etc..)

Good Luck

[Guest j_mommy]

Some say that the dietary response is enough. Some are for testing. I'm for personal choice. I schose to get the testing done b/c I wanted to know for sure.

Yes you have to be eating gluten for the tests to be accurate. Six weeks would be a minumum if you've been off for awhile. Dr. Peter Green actually says that if you do a gluten challenge then the biopsy is teh best way to go b/c blood tests may still be innacurate! Biopsy are good IF they take enough samples(8-10 minimum!!!!).

Most people who have celiac have the gene but not all!!! Some who have the gene don't have celiac.

Good Luck in whichever you choose!

[Dru]

Thanks for all the good feedback. I guess I'm the type of person who likes to know for sure so I would ideally like to have a biopsy. On the other hand, I've been so sick just after eating the oats that I'm dreading even having to test eating barley and wheat. If those make me this sick I will not be willing to voluntarily make my self that sick for a few months just to be told that eating those things makes me sick.

I do have another question -- All of this started for me in March. Is it too soon to have a positive test result? My blood tests were done in April, just a month after my symptoms began. Is it possible that it would take longer than a month of symptoms for the blood tests to be outside of the normal range? Is it possibly too soon to get a positive biopsy result because I have not been symptomatic long enough to do enough damage for it to show up in a biopsy?

Thanks for reading. Sorry to ask so many questions but I am really beginning to think that having this is more than just a mere possibility.

[gfpaperdoll]

Did you have all the blood tests run & sent to a reliabe lab? Did you have an endoscopy?

Not sure "three" blood tests were the right ones. But, yes you could be gluten intolerant or celiac with villi damage & it not show up via blood tests.

I have known for 35 years that I was severely allergic to barley & oats. & barley is in everything that has wheat - almost. I have two DQ1 genes & tested thru Enterolab.com

Have you thought about testing thru Enterolab?

& yes, the real diagnosis is the dietary trial. If you do not eat gluten & feel better & get sicker when you eat one bite of wheat bread or something then that is your proof. Some people do not have outward symptoms that they associate with food, hence they keep eating gluten not knowing that their villi are getting damaged.

I had many symptoms & since I had such a history of food allergies, about 14 years ago I finally figured out that I was also "allergic" to wheat. I just did without crackers etc. as I knew nothing about gluten until 3+ years ago, when I realized I had gluten intolerance & went gluten free. I think the real reason that wheat is one of the top ten allergens is not that all those people are "allergic" to it, but that they have a gluten problem & do not know it... Of course I had a jump in my overall health when I went completely gluten-free by removing all traces & not eating it when convenient...

I think it is not good to eat gluten just to prove that it makes you sick. & those people that think they are going to eat it until the villi are flattened are just playing with dynamite, in my opinion.

& do not even get me started on so called gluten challenges, I mean who ever heard of eating something to see how sick you can get to prove that it makes you sick. which I think you said something similar...

[mftnchn]

You've had some good responses here. Here's my thoughts:

You could ask for a copy of your test results and compare the tests to the five listed on the Columbia University web site or post them here and someone can tell you what you are missing.

Also, there is one of them that if it is low, means that your antibody response is depressed, and means that the tests may be false negative. Again post them here, and someone will help.

Yes, you could be very allergic to oats and not allergic to wheat and barley. The question is, do you have an allergy to oats, an allergy to wheat that the oats may be contaminated with, or sensitivity to gluten, or celiac?

If you decide to test it, be sure you are totally free of all the reaction from the oats. Then I would only test a small amount of the pure food in an organic form. Like a small cup full of organic puffed wheat for example, nothing else on it. Then track your symptoms for several hours. If you don't have any reaction, you can try eating a bit more.

If you don't react, also remember that with celiac, you can be non-symptomatic and still have it causing damage. Also I notice on the forum that some people's response is slow several days or a week or two of eating gluten before they get ill.

One other thing, x-rays would not really show much I don't think. Endoscopy might see flattening of the villi, etc. but sometimes the damage is only microscopic.

[Dru]

Thanks for all the advice.

I will try to get my blood test results and post them up here. I can't get them until at least Tuesday since my Dr. is closed for the long weekend. I don't have a clue which 3 things they tested for but my dietitian and Dr. both work at my university health center and went to a celiac training session a week ago. It happened to be the same morning that I last saw my dietitian so she pulled up my results on the compute and compared them to her notes from the training and told me that there is a "gold standard" test that was not done and that they did not look for a genetic marker. I would have just asked that they repeat the testing but I have been gluten free for 2 months now on my elimination diet.

I am not sure about the Entrolab testing. I don't have a lot of extra money (I went back to school and so did my husband so we have a student's budget and a 2 year old -- money is very tight). I like that I would not have to be eating gluten to do the test, but I am not sure if it would tell me more than I know from the elimination diet. I already tested positive for a dairy allergy with a regular skin prick allergy test. I have reacted pretty badly to oats (I am still not felling better and have not eaten them since Wed. morning). I will be testing barley and wheat if I every get over the oat reaction. What would the test results tell me that I would not find out from doing these things? (not trying to be argumentative, just truly curious if iy would be worth spending the money or if I would just find out what I already know from these other "tests")

Thanks for the help so far. Any additional feedback would be greatly appreciated.

[nora-n]

She probably meant endomysial antibodies and the test for dq2 or dq8.

[CarlaB]

You've had very good advice ... quinoa is gluten-free ... it's rye that's not.

Enterolab can only tell you if you're intolerant ... it can also test you for the genes. It cannot tell you if you have celiac ... so you can get the same information from dietary response.

Are you sure you don't have bacterial dysbiosis from taking abx? You might Google that and see if it matches your symptoms. I'm taking Uva Ursi, Oil of Oregano and Plant Tannins to treat it. Also, massive probiotics. I was tested by a three day random stool sample.

Now that my leaky gut is healing, I can eat more foods without trouble.

Some people are allergic to the oats themselves. I'd get back to feeling better, then try the others in a pure form as mftnchn suggested. One at a time, of course.

[Dru]

Are you sure you don't have bacterial dysbiosis from taking abx? You might Google that and see if it matches your symptoms. I'm taking Uva Ursi, Oil of Oregano and Plant Tannins to treat it. Also, massive probiotics. I was tested by a three day random stool sample.

Actually, my Dr. did order a stool sample (3 samples from 3 different days) but I think they only tested for blood. I will have to ask him about this. I tried to google bacterial dysbiosis bu I think it is too late at night for me to make any sense of that right now. If there is a particular website that you would recommend I read, please let me know.

Is this something that my GP would test for or did you go to some sort of specialist or alternative medicine Dr? I asked my Dr. about candida and he told me he did not know a lot about that and I would have to see a neuropath for that kind of question/diagnosis.

Some people are allergic to the oats themselves. I'd get back to feeling better, then try the others in a pure form as mftnchn suggested. One at a time, of course.

I thought that the only thing I had tried over the past 2 weeks was oats, but I did eat some Lays potato chips and some Kettle brand chips since they said that they only contained potatoes, sunflower or safflower oil and salt (all of which I can eat with no problem). I really haven't eaten any pre-packaged foods other than that since starting the elimination diet. I had been feeling better today (finally, a week after I first ate the oats) and after going grocery shopping today and eating the kettle brand chips I bought I got horrible gas and stomach pains and have felt horrible ever since. All of this started about 45 minutes after I ate the chips. I actually had a similar reaction to the Lays chips yesterday. I have read that CC can be a problem with both of these products. I have not felt well enough to test barley or wheat yet to know if those are a problem, but I have been gluten free (prior to the oats) for 2 months now. Is it possible that I have even been gluten-free long enough that my body would react to such a small amt of gluten (I assume that CC is about the smallest amt of gluten you can get "glutened" by)?

Needless to say, I gave the rest of the chips to my husband and have sworn off any other prepackaged foods other than the Enjoy Life brand things and Namaste mixes that I have been using. I want to make sure that I do not get any hidden sources of anything that could make me sick so that I can get back to feeling good and test barley and wheat (which may make me sick as a dog again for a week or more)