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Waiting On Test Results...


elfdream

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elfdream Rookie

I've gone over this forum and have already had some things answered. What a great place.

I have suffered from IBS on and off for years. My last bout ended with a hysterectomy where a large but benign ovarian cyst was removed. It stopped and I thought that was the end of that. Before then I was also able to control the IBS pretty much with a method of eating soluble fibers first (white bread,white rice,potatoes white rice first) then protein and then the insoluble fibers last. It worked for the most part. I can't remember if eating the white bread helped or made it worse or not...or if it was the white rice or potatoes that actually helped.

I'm lactose intolerant btw but I'm also part Native American. Documented. I thought that was the reason.

I am also pre-diabetic. I do not eat cakes, cookies or anything like that. I gave up white sugar a long time ago. I do not eat processed foods. We don't even own a microwave. I do not eat red meat.

Also was diagnosed with fibromyalgia but mine is a mild case. I can pretty much function although I am sore a lot.

My husband and I signed up for a behavior modification eating plan. Its one of those 'only eat when you get hungry, chew your food slowly' sort of things. I am about 15 to 20 pounds overweight. Husband and I both have lost some weight on it. However my digestive system started to go a bit whacko. I thought it was the result of adjusting to a new way of eating. Stomach was gurgling all the time and BMs were inconsistent. Sometimes constipated, sometimes diarrhea. Then I had some shoulder problems and a different doctor prescribed TWO different pain meds where diarrhea was the side effect. What I thought was the IBS came back again but this time it would not go away. Lots of gas, bloating, stools were loose and fatty...there was some pain and it was gross. Sometimes I would run to the bathroom only to expel a lot of gas. I began to note that it got worse when I ate bread or crackers..especially things made with whole wheat.

The thing is I have eaten things like subway sandwiches and pasta on occaison and while I noticed the pain in my right side I don't remember the stomach gurgling and the bathroom problems.

In desperation I went gluten free on my own. It was like a miracle cure. The next day my stomach quieted down, the pain went away and I started having halfway normal BMs. I slipped up and ate something with gluten and the whole thing came back. Gurgling stomach and pain. I also experienced some soreness on my lower right side where I normally had the pain but it wasn't like before It felt, and this might sound silly, the way something feels when it is healing. I was also cranky and hungry for the first day or so but that passed.

So I went to the doctor, told her everything and she ordered the blood test. She was very good about it and said if the diet helps to keep it up so I am waiting on that. I feel so good now its hard to believe that I might be Celiac or gluten intolerant.

My problem? I am supposed to serve on the staff of a week-end training session that is to be held at a Boy Scout camp. They are very good about seeing to dietary needs of diabetics and religious needs (fish on friday during Lent for Catholics) and so forth and I'm sure that if I had told the cooking staff a month ago what was going on they could accommodate me but I am supposed to show up for this thing tomorrow! They are all "Serve Safe' certified and all that but I could see someone using the same knife to slice the bread and carrots...or whatever and me not knowing. Its a volunteer thing but I'm not sure if I should go or not. What would you do?

If doctor wants to do a biopsy do I need that for any kind of insurance purposes? I really don't want to start eating the gluten again. Right now my tummy is only growling when its empty..and there is no pain.

And can the symptoms show up suddenly like this? The latest rounds of diarrhea were way different from what I thought were earlier IBS episodes. The gas, bloating and pain were all different and have only happened within the last few months. Could it be since I was already on a pretty much restricted diet to begin with that if I do have Celiac disease it took the symptoms a bit longer to show up?

I still amazed at how quickly cutting out the bread and pasta and crackers helped!


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sb2178 Enthusiast

Well, the bad news: after going gluten free, your blood work isn't entirely valid. It can switch from positive to normal quickly after you remove gluten or even eat a low gluten diet (Atkins, low carb diets). You also need to be eating gluten for a biopsy to be valid. The intestines can heal in as little as three days, depending on the damage.

The good news: you did an elimination diet and challenge! Gluten is a problem for you, and your quality of life will be higher if you eliminate it.

The disease starting: any sort of stimuli can turn it on and it is progressive so it could be mild and gradually get worse, or appear in a severe form. Typically, it's thought of as a reaction to stress, or hormonal changes, or illness, or an accident but often it's nearly impossible to identify what started it. Birth, in some cases!

Your weekend: I'd call, and ask what they are serving. Or if you can pack your own and they'll refrigerate it.

elfdream Rookie

Thank you so much for replaying and for the information. At this point I really don't care if I have an official diagnosis or not. I just know that I don't want to get sick again.

I corresponded with the directors of the training week end and one of them was very knowledgeable about celiac/gluten sensitivity. He agreed with me that if the cooks had known about it a month ago they would have been better prepared to deal with it but springing this on them at this late date was not workable. They planned the menus and ordered all the food way in advance of this event plus the kitchen is small. The only prep place that might be used as a gluten free zone is currently used as storage. He agreed that it was probably best that I skip this week-end and work on sorting this stuff out myself first.

Once again thanks for replying!

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
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    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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