Symptoms

[Oggie]

I was recently diagnosed with Celiac in Feb. 09 after many negative tests. I've changed my diet completely (very difficult) and am fairly certain I'm no longer ingesting gluten. Like many others I've made numerous mistakes early on which had disastrous results everytime. Unfortunately my symptoms have continued to rear their ugly head usually 1 time every two to three weeks which results in ER trips to control the violent vomiting and abdominal pain that occurs with these episodes. Recently I had three of these attacks in a one week period. I've read alot on this forum and have experienced most of the symptoms described by others, but I have not seen anyone describe the violent vomiting of bile during their attacks. Is relentless vomiting and dry heaving something anyone else experiences with this? I also have recently been diagnosed with intolerances to casein, soy, and have been told to keep intake of sugar to a minimum to try and correct some inbalances in my digestive system. I've already lost 115 lbs. because of this (from 295 down to 180 and still dropping weight). They removed my Gall Bladder thinking that was the problem about a year ago so I also have constant diarrhea and have to be very careful with food items with high amounts of fat otherwise that also makes me very ill. Basically, I am having a hard time maintaining my mental state due to this. It's been about a year now and while the attacks have gotten less frequent I live in constant fear of the next. I've had 50+ trips to the hospital, and have spent 35+ days admitted while they try to figure out what's wrong (they never find anything) been subjected to every test available. They load me up with narcotics to control the pain which just make me more tired, send me home with the same drugs and hope for the best. This is not working for me. While the pain meds will give me more time before having to return to the ER, this is no way to live. So I will now try to cut out the other food items I've been told to stay away from, but at the same time I don't know what to eat to maintain a nutritional balance. This illness is wearing on me tremendously, has affected my ability to work (I'm lucky to feel well enough to work even 2-3 days a week right now), is causing financial hardships and my kids are to used to seeing me ill all the time. I can't stand thinking this will be their memory of me being sick all the time and unable to play with them. Mentally and Emotionally I'm exhausted. Can anyone else out there relate to my story, and if so, do you have any ideas or suggestions as to where or what I should do next. I'm committed to the diet changes, I just don't know what to eat anymore. Outside of fruits and vegetables and rice products, it seems like there isn't anything else safe to eat. Thanks for any advice you can offer me.

[txplowgirl]

Hi Oggie,

I am so sorry you are feeling so bad.

I don't have the vomiting you do but every once in a great while when I eat something i'm not supposed to.

You probably already know this if so just ignore.

My questions are. Have you checked your meds for gluten, your shampoos, your makeup, lotions?

In my opinion sounds like you are getting cross contamination possibly. With children in the house I wouldn't be suprised. Do you cook gluten foods then your gluten free foods? They need to be cooked seperately, or your foods first. Teflon pans, if they have scratches can have gluten in them, DH if he consumes gluten and he dosen't brush his teeth and he kisses you can gluten you.

You may have become what we call super sensitive where just a crumb can get you. Do you eat out a lot? Lots of cross contamination there. Do you eat oats a lot? Cross contamination there due to them being in a facillity that processes wheat. Your condiments like butter, jellys, mayo, etc may have crumbs in them. Also you might have developed more food intollerances. Maybe to the nightshade vegetables like tomatoes, potatoes, peppers, eggplant, etc. Maybe ALL dairy.

You might want to try the Specific Carbohydrate Diet or the Candida diet. Plus maybe keeping a food diary would help.

I hope some of this helps and you get to feeling better soon.

[no-more-muffins]

Wow, it sounds like things have been really rough for you! I don't have too many answers but I did think that perhaps you have microscopic colitis. The constant diarrhea makes me wonder about that. There is a wonderful support board for MC and you could ask questions about that over there. Many of them use a medication called Entecort to help with their diarrhea. It is fairly common for celiacs to have MC as well. Most people with MC are intolerant to gluten, many to soy and casein. Some have other intolerances such as corn or other things. I really recommend going over there and introducting yourself. Maybe they will have some advice for you.

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[Oggie]

Thank you for your response, part of the difficulty is I do have separate cookware and have checked all those misc. items for gluten. I keep separate condiments and such which are all labeled just for me(all my food is labeled) and I never eat out anymore, I find it to be quite high risk even in the establishments advertising gluten free menus. I do believe I might be super sensitive and actually made an appointment to be tested for further food allergies/intolerances for early this next week. Hopefully something will show up to help answer this mystery. Thanks Again.

quote name='txplowgirl' date='Sep 19 2009, 01:20 PM' post='563170']

Hi Oggie,

I am so sorry you are feeling so bad.

I don't have the vomiting you do but every once in a great while when I eat something i'm not supposed to.

You probably already know this if so just ignore.

My questions are. Have you checked your meds for gluten, your shampoos, your makeup, lotions?

In my opinion sounds like you are getting cross contamination possibly. With children in the house I wouldn't be suprised. Do you cook gluten foods then your gluten free foods? They need to be cooked seperately, or your foods first. Teflon pans, if they have scratches can have gluten in them, DH if he consumes gluten and he dosen't brush his teeth and he kisses you can gluten you.

You may have become what we call super sensitive where just a crumb can get you. Do you eat out a lot? Lots of cross contamination there. Do you eat oats a lot? Cross contamination there due to them being in a facillity that processes wheat. Your condiments like butter, jellys, mayo, etc may have crumbs in them. Also you might have developed more food intollerances. Maybe to the nightshade vegetables like tomatoes, potatoes, peppers, eggplant, etc. Maybe ALL dairy.

You might want to try the Specific Carbohydrate Diet or the Candida diet. Plus maybe keeping a food diary would help.

I hope some of this helps and you get to feeling better soon.

[Oggie]

Thanks for the info, I will definitely check into that.

Wow, it sounds like things have been really rough for you! I don't have too many answers but I did think that perhaps you have microscopic colitis. The constant diarrhea makes me wonder about that. There is a wonderful support board for MC and you could ask questions about that over there. Many of them use a medication called Entecort to help with their diarrhea. It is fairly common for celiacs to have MC as well. Most people with MC are intolerant to gluten, many to soy and casein. Some have other intolerances such as corn or other things. I really recommend going over there and introducting yourself. Maybe they will have some advice for you.

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[Roda]

Just a thought. Could you be experiencing problems with too much excretion of bile into the small intestines? There are medications (bile acid binding agents) that can help control the diarrhea. Have they done any test to see if you have any problem with the biliary system(excluding the gallbladder since you had it removed) like an ERCP or MRCP?

here are some links to the tests:

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