Help! Since The Doctor Never Called..

[Scheimpflug]

Hi Everyone, Thanks for reading my post (This is a great forum by the way, its been very helpful)

About a year ago I started having diarrhea 3 times a day about three quarters of the way through every single meal. I would notice that it would always take me a really long time to eat too, like a half hour longer than everyone else. My stomach would be super bloated every time I ate too. I also would get a headache almost every day, and half the time it would be a migraine. I've always had a hard time gaining weight, after I got mono 7 years ago I lost 10 pounds (from 105lbs to 95lbs) and was never able to gain the weight back. I always seemed to have allergies too.

During this year I was eating a ton of gluten, it was basically my whole meal 3 times a day because it was cheap and I had literally no budget for food (recent college grad in a bad economy!) In November my boyfriend's Ulcerative Colits got really bad and he had a major flare up. He started up on the gluten free diet after that because he read that it helped tons of people's symptoms clear up. As we learned more about gluten- free we discovered that it might help my headaches so I went on the diet too.

I started the diet in January and my headaches have gotten a lot better, and so has the diarrhea. I have tested myself with gluten a few times during the last 3 months and this is what has happened: First time- half a slice of pizza, extreme diarrhea. Second time- questionable chinese food w soy sauce- throat and ears started hurting, nose got all clogged up, half hour later- headache. Third time- flavored oatmeal packet- extreme migraine that lasted 3 days.

I thought it was great that I was feeling better by simply not eating gluten, but looking back at my food log, I still am getting headaches about 50% of the time (its better than 90% right?) and only had 3 episodes of diarrhea. But lately, the last week or so (which is why I want to go to the doctor now) I started getting stomach cramps every time I eat. It feels like there is a hole in my stomach or something. I have had constipation in the last few days, my stool was dark green a couple of times, my urine is cloudy (sometimes I think it looks greenish but I'm not totally sure), headaches..

I was at my parents house eating unusual things so I don't know if something was cross contaminated or what, but I'm usually pretty careful. If I can't eat gluten for the rest of my life I'd like to know for sure now, before it's too late to do the testing. So my question is, if my doctors appointment is in a week from now should I start eating gluten before the appointment or is it too late for the testing to be accurate? I wanted to ask the doctor, but he never called.

[mushroom]

Hello and welcome.

Unfortunately, eating gluten for a week is not going to help with your testing. It is normally advised to eat the equivalent of 3 ti 4 slices of bread for a period of two months to ensure accurate test results. Healing starts taking place immediately after the withdrawal of gluten - the antibodies retreat and the gut starts to heal. Unfortunately, you have had a good two months of healing already. There might be a slight possibility of getting a positive scope but most GI's will not do a scope without positive blood testing

And that's not to say that you will test positive for celiac disease even if you did the two-month gluten challenge. There are forms of gluten intolerance that don't show up on the celiac testing which can be just as debilitating and destructive.

If you were eating at your parents' house, you would probably be eating food prepared with pans and utensils that are used to prepare gluten and your food was likely cross-contaminated. Eating at other peoples' houses is the hardest thing for celiacs to do because we have little control over how the food is prepared, even if the ingredients are naturally gluten free. As for your own house, have you thoroughly deglutened it? Got rid of all wooden utensils and cutting boards, scratched plastic and nonstick pans, bought a new toaster and colander. All these can be sources of continuing gluten in your diet. If you are living with someone who eats gluten your risks of cross-contamination are particularly high even at home. So before you start considering other problems, make sure that you are in fact gluten free - even a little gluten can (and does) hurt.

[Scheimpflug]

Hello and welcome.

Unfortunately, eating gluten for a week is not going to help with your testing. It is normally advised to eat the equivalent of 3 ti 4 slices of bread for a period of two months to ensure accurate test results. Healing starts taking place immediately after the withdrawal of gluten - the antibodies retreat and the gut starts to heal. Unfortunately, you have had a good two months of healing already. There might be a slight possibility of getting a positive scope but most GI's will not do a scope without positive blood testing

And that's not to say that you will test positive for celiac disease even if you did the two-month gluten challenge. There are forms of gluten intolerance that don't show up on the celiac testing which can be just as debilitating and destructive.

If you were eating at your parents' house, you would probably be eating food prepared with pans and utensils that are used to prepare gluten and your food was likely cross-contaminated. Eating at other peoples' houses is the hardest thing for celiacs to do because we have little control over how the food is prepared, even if the ingredients are naturally gluten free. As for your own house, have you thoroughly deglutened it? Got rid of all wooden utensils and cutting boards, scratched plastic and nonstick pans, bought a new toaster and colander. All these can be sources of continuing gluten in your diet. If you are living with someone who eats gluten your risks of cross-contamination are particularly high even at home. So before you start considering other problems, make sure that you are in fact gluten free - even a little gluten can (and does) hurt.

Thank you so much for your help! I'm glad I didn't eat if for nothing if 7 days wouldn't have even made a difference! Now that I think about what you said about my parent's cooking utensils and appliances being contaminated it makes a lot of sense. I cooked cookies at their house using their mixers, cookie sheets etc. and since I used my own gluten- free flour I didn't make the connection. My boyfriend was also at my parents house with me and he had a mini flare up after the cookies. I also helped clean up some (real) flour that my brother spilled in the kitchen.. I remember my nose felt tingly after that and I got a headache.

Can people who are gluten intolerant ever eat gluten again? Do I just need to let my intestine heal? If so, for how long? Is it even worth seeing a doctor for this if it's too late for me to get tested? I some times wish it was easier to get a definitive diagnosis..

[Scheimpflug]

Also, about the question of if I've "deglutented" everything. No, I haven't thrown away all my utensils, or cooking wear but I have washed everything really well. I will consider getting rid of the wooden spoon and the plastic cutting board, things that could be difficult to scrub the gluten off of. I will probably never use the colander again. According to my log I felt pretty sick the last time I used the toaster too. What about the bag of flour that sits on the shelf with the rest of my food? If I don't touch it and don't think any has spilled out of the bag.. Is it still bad for it to be sitting there next to the canned goods and rice?

[mushroom]

. What about the bag of flour that sits on the shelf with the rest of my food? If I don't touch it and don't think any has spilled out of the bag.. Is it still bad for it to be sitting there next to the canned goods and rice?

Get rid of the flour. Flour gets into and onto everything. You shouldn't ever consider cooking with it again, so why would you keep it? Get really strict about getting rid of the gluten and I suspect you will feel a lot better. Clean off all your pantry shelves and all kitchen surfaces. While you're about it, clean all your door knobs and handles. I don't even let anyone bring gluten into my house. Except if it's on their own plates pre-prepared, and they take the plates right back home with them without washing them