Controlling Symptoms with Diet

I don't have a complete diagnosis. The doctors I have seen, including 2 gastros, ever ran enough tests, or the right ones, to dx completely what's wrong. So, it's been a piecemeal dx, at best - from an allergist who did food skin testing + elimination diet; then as a 'patient' for a biomedical research group who discovered by accident the Fructose Intolerance; and later an ER visit with small intestine almost swollen shut where a barium swallow + CT scan were done. However, through trial and error, over the years [I'm 69 yrs young now], I have figured out, mostly on my own, how to control the episodes of nausea, bloating, intestinal pain and swelling, violent vomiting and diarrhea, and accompanying exhaustion. [Actually started having digestive problems shortly after birth. Also, my daughter has been dx'd with probable Crohn's - she controls hers with a vegetarian + gluten free + soy free diet].

Here is what is working for me: currently, I am eating a 100% dairy free + gluten free + a very low sugar diet, take lots of vitamins + minerals, fish oil, and probiotics. If I should start feeling an episode come on, I quit eating solids for a day or two and live on liquids; then as symptoms subside I gingerly start back on my regular limited diet. I haven't had a serious episode in over 6 yrs now since adding the gluten free. [Recently I tested negative for the Celiac genes - so we know that's an extremely low probability. But, eliminating wheat, rye, barley and oats has made a huge difference]. I mostly eat natural foods: grilled meats/fish; steamed vegetables; can tolerate some raw fruits; potatoes, corn, brown rice + quinoa are my main starches. I rarely ever drink a soda, fruit juices, or alcoholic drinks - usually just water or unsweetened tea - and never eat deserts.

:kiss:Forgot to mention that my daughter besides being a vegetarian and soy free, is also gluten free, and does not consume alcoholic drinks, plus avoids HFCS [so no sodas either]. She can control her symptoms on this diet.

I'm adding an edit here: It would be good to note that: if in fact we both have Crohn's, we would probably fall into the 'mild to moderate' group - so please take this into consideration. If you decide to try a diet change of any kind to see if you can control Crohn's and are currently on medication...it seems logical to NOT stop your medication while trying out a diet. If symptoms dramatically change because of a diet then you could approach your doctor with the idea of tapering off meds. I would think making this decision should always be one that you make with your doctor.

Thank you for sharing your story and what works well for you, we really appreciate it. If you've never heard of them, you may want to look at the Specific Carbohydrate Diet or Paleolithic Diet as they both do in large part what you're doing and explain the theory behind it.

Hiya, I also just wanted to say thank you for the posting. I am sorry to see that you have had to sort this yourself but it is good to hear that it is working for you.

All the the best to you.

I just discovered this article which may explain why my daughter is having success with a vegetarian, soy free, gluten free diet:

Lifestyle-related disease in Crohn’s disease: Relapse prevention by a semi-vegetarian diet

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877178/

"Lifestyle-related disease in Crohn’s disease: Relapse prevention by a semi-vegetarian diet"

World J Gastroenterol. 2010 May 28; 16(20): 2484–2495.
Published online 2010 May 28. doi: 10.3748/wjg.v16.i20.2484
PMCID: PMC2877178

Thanks for sharing that. I'm reading through it right now. Some highlights:

There is enough evidence to indicate that IBD is a diet-related disease.

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Pre-illness case-control studies, including those in Japan, have reported increased intake of sugar, fast foods, chocolate, and cola drinks in IBD, and a decrease in total fruit and vegetable fiber in CD

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We regard IBD as a lifestyle-related disease that is mediated by mainly a westernized diet

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Consequently, if a suitable diet is identified and patients stick to the diet, we believe that the majority of IBD patients could be free from relapse without medication.

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The conventional recommended diet for IBD is a low-residue diet. A fear of irritating the bowel with dietary fiber has led to a low-residue diet. However, there is no evidence that such a diet is ideal for IBD.

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David , I feel this diet information is so important. When times are very bad I have started doing the liquid diet for a few days and this does help. I have started to cut out fibre and fruit and found this also helps. Eating more fish doing stretching excercises every day helps move the found on ,so to say when Im blocked up. I think its really important to take positive steps with the diets as we wait sometimes very long periods for little or no answers for doctors.

The patients in this trial were in remission when they started the diet. Of the 22 who took part, only 16 actually continued with the dietary modifications. None of them had a CDAI of more than 150.

Only 11 patients were followed beyond one year.

They note in the discussion:

"There have been trials for prevention of relapse in CD with diets or supplements. Excellent results with an exclusion diet of intolerant foods[62], an unrefined-carbohydrate, fiber-rich diet[63], or fish oil supplement[64] have not been reproduced in other studies[65-67]. Therefore, none of the dietary modifications has been widely accepted."

This is a very small study, using patients in remission via medication and surgery.

(The diet includes milk and soy products.)

The conclusions regarding the diet seem wishful at best.

I agree that the study is far from perfect. And I'm not a huge fan of the diet they chose, but there was some very interesting information (such as the green tea promoting beneficial bacteria which I'm now researching) and I like many of the stances they took. Thanks for bringing all that up though Handle

Thanks for the info very helpful:dance:

Since I last wrote the above [it's now 2015], I had upper + lower endos with biopsy done because my ferritin levels have hovered between 360-500 [<200 is normal for a woman]; the hemotologist dx'd "acute phase reactant due to inflammation" rather than an iron problem. We are guessing most likely due to gastroentestinal issues after everything else was checked out. Of course, the new gastro found nothing abnormal at the time and declared me as having IBS. Nice to know my diet and shelf-treatment is working so well...or did he just miss something???? That was 1 1/2 yrs ago. Since then, my ferritin levels have remained high..no one knows why or at this point seems to care as they have already run that course of tests and couldn't figure it out the first time. Anyway, I've had a few episodes here and there since 2011 which I self-treat the usual way. For example, a month ago I ate a piece of fresh coconut about the size of an Oreo cookie. Twenty minutes later the small intestinal cramping started and continued into a full blown flare which lasted for about 13 days...but fortunately this time with no vomiting, just nausea, diarrhea, cramping and dull pain. It took 2 rounds of liquid diet to calm down my intestines. It's a little over a month now and I am still having some residual issues from it. I didn't bother to go see the gastro. Honestly, I have kind of lost faith in them. I still wake up sweaty at night sometimes, the air conditioner is set at 25, my husband with blankets on and me with only a sheet half over me. I don't have the mouth ulcers anymore though, now with the mega doses of vitamins, especially the Super B's. However, there's another interesting development since 2011: I did 23andMe genetic testing and found out I'm at increased risk for IBD; plus, a complete unknown surprise -- found out that I am 24% Ashkenasi Jewish, which I understand is another risk factor for IBD. Might be that unknown Grandfather?

I assume you told your doctor about the Ashkenasi heritage? I ask because there are a few things they'll likely want to check you for.

No, didn't know about the Jewish genes at the time of seeing the gastro for the endos. Besides he didn't ask about that kind of thing as I recall then anyway. Some doctors aren't too up-to-date on the latest genetic research stuff. It's still pretty new. It's usually not diagnostic for most diseases [there's only a handful where if you have 2 genes, one from Mom + one from Dad you have the disease], but only one of the markers for increased, average or decreased chance of contracting the disease. Environmental factors being a huge influence on whether a disease develops itself in a host or not. IBD diseases are these regular types expressed through genes.