Just went to see another gastroenterologist for a second opinion. I am scheduled for an endoscopy on Tuesday and have to go for a blood test to detect inflammation in the body. I am so excited! I know, who is excited for an endoscopy, right, but it is one step closer to an answer. The doctor said I either have IBS or Crohn's. He also told me to avoid all lactose ( including all cheese, even lactose free and butter). He also said to avoid soy and almond milk which he says inflame the intestines. So all this time drinking almond milk was the wrong move! He also told me to go back to my normal diet as I was loosing too much weight.
I have been eating gluten and onions for a little over a week now and I have had no flare ups. I am very relieved. I have been feeling much better now that I have been drinking rice milk instead of almond milk and avoiding eggs and nuts. Will keep going with this for now but all other foods are back in (excluding junk food of course). We will see how I do with my regular diet.
At least I can have gluten and onions at wdw. This opens up a lot of dining options. Yay!
Hi, I hope you get everything figured out. An endoscopy, colonoscopy, and barium test are a good start to determining what's going on. My sister was diagnosed with Crohn's at 16. It took them 6 months to figure it out and for a Crohn's diagnosis that was pretty fast. Hers is very severe, on the extreme end of the spectrum, so two years later we are still not in remission. We've gone through a number of doctors who pretty much told us they had no idea what to do before getting her into a top IBD clinic. Now she has a team of specialists, and hopefully, we are on our way to remission. Our GI doctors, even the ones at the children's hospital, hadn't seen very many Crohns cases, and the ones they had seen were mild to moderate, not severe. However, at the IBD clinic, where we are going now, they only deal with Crohns and Colitis patients and usually just the more severe cases. Having an IBD dr vs a GI dr seems to have made all the difference for us. We finally feel like our doctors have a clue. So my point, just don't give up. The answer is out there somewhere. You just need to be your own advocate. Get informed, and then keep looking until you find the right doctor for you.
We are also kind of in the same situation as you food wise. She has just been put on a temporary restrictive diet to allow all the damage inside her stomach and intestines to heal, and our trip is only a few weeks out. I'm a little concerned about meals because she can only eat about 10 foods total. (Potatoes, pasta no sauce, rice, green beans, cooked carrots, fully cooked asparagus, melons, peeled apples, bananas, meats marinated in beer to break down the fiber, eggs, and peanut butter) That's pretty much it. Poor kid is getting so sick of sweet potatoes.
Also, something else to think about unless you have an allergic reaction to peanuts or peanut oil, you should be safe to eat peanut butter. You will hear don't eat peanuts, but its not the actual nut that is the issue. It's the texture. Nuts, popcorn, tortilla chips, and lettuce, all have hard edges that rub against your insides and can cause problems for people with inflamed digestive tracts. Think of it like this - you have a cut on your arm and you keep poking it with a stick, or rubbing sand or gravel against it. It won't heal because just as soon as it starts to heal you break it open again. That's a simplified example of what happens in your stomach and intestines. Unless you are actually allergic to peanuts, creamy peanut butter should be fine. You can have Crohn's and not be allergic to anything. It's autoimmune based not food based. That's why diets won't heal it. You can help your body heal by not poking it with so many sticks, and to do that diets help some to allow your meds to work, but they are not a cure, if that makes sense. We've basically come to the conclusion the easier the food to digest, process, and absorb, the better my sister handles it. But that's just Basic Health 101. We tend to ask ourselves would this upset someone with an average stomach? Is it bad for you in general? If those answers are yes, we try to limit or avoid those foods, and that does help a little.
One more thing, don't want to rain on your happy onion parade, but those cause gas, along with broccoli, and mushrooms. This gas can cause bloating and further irritate inflamed tissues, so not sure I would add that back right away. Also, you might want to be careful of pineapple as well as it is very fibrous and makes many people with digestive issues extremely sick.
Different foods cause different issues, gas, acid, diarrhea, constipation, etc. Its helpful to look at a food chart and see which foods cause which types of problems. This makes it easier to determine which food might be causing you problems.
If you do end up getting a diagnosis of Crohns I'd be happy to answer any questions you might have. At this point, I think we've worked our way through most of the drugs, and done so much research on the subject that the last dr we saw asked if any of us were working on a medical degree. We hosted a Crohns awareness carnival for kids last year, and I still have PDF copies of the information fliers and stuff if you'd be interested. Some of the stuff is geared toward kids, but some is just general info.
Again, hope your trip goes well. You'll have fun no matter what, and out of all the places I can think to vacation, I'm pretty sure Disney is the most accommodating.
thanks. That is so great that you hosted a Crohn's awareness carnival! You are too cool!
