My first post: elimination diet

I've used this site for awhile now, but this is my first time posting (I'm a little bit shy!).  

Does anyone out there have experience using the elimination diet as a method for self-diagnosing a food "allergy?" See for example http://en.wikipedia.org/wiki/Elimination_diet .

So, took a brief look at your profile to get a sense of the issues.

Food allergies tend to have remarkable reactions. I am not seeing in your profile at least that you have those kinds of responses: swelling, itching, nausea, shallow breathing, hives, diarrhea. While it can still be difficult to isolate the food in question, the reaction happens quickly (an hour or two at most).

Now if you are having these kinds of symptoms, then the quickest way to isolate the cause is visiting an allergist for comprehensive scratch testing (they take the allergen dipped on the end of a pin and simply scratch it across the surface of your skin. It doesn't hurt, but it can itch if there is a reaction).

So have you been tested for celiac disease when these symptoms initially cropped up 5 years ago? If you were and it came back negative, I still would not rule it out because the blood test often gives false negatives.

By the way, I would not go on the most recent blog entry on this site regarding anything to do with celiac disease and gluten-intolerance. It is not generally accepted anymore that there is any difference between celiac disease and gluten-intolerance. Gluten-intolerance is merely the early stages of celiac disease. There are a series of errors in the blog post, so I would recommend www.celiac.com for more up-to-date and accurate information on the condition.

By far the best way of determining if you should go down the path of removing gluten from your diet (the blog is also wrong in stating that it causes deficiencies to be gluten-free, it does not), is to have the mouth-swab genetic test to see if you have the alleles that would be necessary for developing celiac disease. Now, you can have the genotype and not have the disease, but it is a good smoking gun determinant for whether you should attempt a gluten-free diet to alleviate your symptoms.

If you have problems with dairy, you could be lactose intolerant due to your genetic origins -- but that should've been present from childhood. If you have developed some issues with lactose intolerance in later life (or suspect it), then that could be happening because you are an undiagnosed celiac patient. The lactose-intolerance test is a breath test and the results are pretty conclusive on that one.

One more note -- IBS is not a diagnosis -- it is the medical community's code language for "we have no diagnosis for what is happening to you". It is the label given to patients when no other obvious condition seems to be the cause of their gastrointestinal symptoms

As for elimination diets, you can absolutely attempt these, however it is best to do so with the involvement of a doctor and/or allergy specialist. While a healthy person can manage the few weeks it takes on such restricted foods, you would want to make sure ahead of time you don't have any underlying health issues (hypoglycemia as just one example) that would make the diet a bad idea for you to attempt.

I hope this gives you some ideas for your next steps. Best of luck.

Thank you for your very thorough response!

I first started having issues when I returned to the US after a two-week stay in a small village in France.  I had been sick while in France--vomiting, diarrhea--and was still not completely well when I returned home.  The vomiting went away but the diarrhea did not.  I was in the bathroom at minimum five or six times a day.  Along with this, I was constantly bloated and flatulent.  My stomach was quite distended; pushing at it with my finger felt like pushing in on a blown-up balloon.  I hope I'm not sharing too much information.  I was also having some heartburn (although it's not clear this was related).

An unremarkable endoscopy and a negative test result for giardia led to the conclusion first of acid-reflux and then IBS.  The doctor who diagnosed the IBS said that perhaps I was eating too much fiber and that I should cut down on my fiber intake.  Incidentally my brother, who is an MD, said almost exactly what you said about the IBS diagnosis.   At the time I was not tested for celiac or lactose intolerance. 

After spending a few years more-or-less resigned, I had the blood test for celiac (but not lactose intolerance) and that test came back negative.  It was then suggested (by a different MD) that I  eliminate foods high in fructose from my diet--honey, anything with high fructose corn syrup, apples, pears, etc.  I kept a journal for two weeks and my symptoms eased.  Then on the third week I introduced one cup of Gatorade per day and on the first day the symptoms resumed.  Two or three days without Gatorade made the symptoms subside.

So for the past two-ish years I've basically stayed away from the frustose "problem" foods, and whenever I relaxed the rules and ate, say, a tbsp of honey or dried fruit or anything with HFCS, the symptoms have reappeared suddenly (within a half hour).  After a few days of strictly avoiding these foods, the symptoms go away.

But now even with this diet it seems that the symptoms are back (although the diarrhea is not as severe yet). 

I have an appointment with my new general practitioner (I've recently moved to a new city so I get to start fresh with new doctors).  I didn't know that bit about false negatives for the celiac test ... very interesting.  I'll see if that doctor will do the mouth swab test you mentioned AND the lactose intolerance test ... and see if I can get the scratch test done. 

None of my symptoms are debilitating which is probably the reason I haven't been as aggressive as I could have been about pinpointing the problem.  But it definitely affects my quality of life (and my husband's for probably obvious reasons).  Mostly we've been talking more seriously about starting a family, and I want to make sure that I'm completely healthy before we go down that road.

Thanks again for all of your advice!  Right now I'm poking around on the celiac website.  My apologizes for writing a novel in a response to a few of your questions.  :-)

Given how this all started, I would highly recommend visiting www.badbugs.org.

Jackie Delaney, who runs the site, was treated for D. fragilis and B. hominis by Dr. Thomas Borody in Australia. He is a nobel prize winning gastroenterologist who has done some amazing work treating people with supposedly commensal (means harmless) gastro-intestinal infections.

Giardia is the one that most North American doctors are familiar with. Stool tests for all parasites are even more falsely negative than the celiac disease blood test. It used to be that three separate stool samples would be required because the lab looks for parasitic eggs and those are only shed at certain times in a parasite's life. However, labs in the US and Canada changed their protocols because (at the time) it was rare to get parasitic intestinal infections in the developed world.

It means that they are not looking for parasites because they so rarely appear, so it presumes a much lower incidence of a false negative than may be the case today. The protocols are likely ineffective now due to contamination of ground water across the US and Canada.

[I know this sounds horrible, these are single-celled microscopic parasites, so it's not creepy crawlies!]

Either due to genetic predisposition, or due to a recent course of broad spectrum antibiotics, these parasites can cause on going severe illness for many people. The primary source for these parasites is ground water contaminated with fecal matter from animals.

It is extremely poorly understood in North America because it is wrongly assumed our water systems are fabulous (not so for rural well-drawn water anymore).

It would have also been assumed by your physician that France's water systems are perhaps questionable but not on par with visiting a developing nation. So, after one test for Giardia llamblia, they would've ruled it out and not pursued the possibility of parasites further.

I personally had one patient with six initial stool samples (two separate sets of three samples over several days) that were all negative. Two years later we re-ran the tests (a series of three) on her insistence and all three came back positive for B. hominis at that point.

These parasites are treatable with antibiotics but not the gold standard used here in North America (which is 10 days on Flagyl -- metronidazole). The failure rates for Flagyl or Septra are such that it will only ensure drug-resistance. It requires a cocktail of antibiotics for a 10 course.

That fructose is an issue for you would lead me to consider D. fragilis -- particularly fond of sugars. B. hominis is a fan of complex carbohydrates. However, there are other possibilities that comprehensive (and likely repetitive) stool sample testing will hopefully confirm.

If it should indeed turn out to be water borne parasites, then an intestinal illness is also the most common trigger for developing active celiac disease. So, if you turn out to have parasites, are successfully treated and some symptoms persist, consider celiac disease again at that time.

I am sorry for the long post as well!