Questions And Confusion

[kay777]

I'm feeling sad today and tired of trying to figure out what is wrong with me. Yesterday. a 2nd doctor sort of just looked at me, knda like poor thing, kinda crazy. Both Dr.'s said my results were weak positve. IgG high, IgA high. I guess the weak positve was the tTg which was in the weak positive range. I had an endoscopy and colonoscopy done resulting in gastritis and colitis.

The doctor said my colon looked like I had been taking laxatives my whole life. Which I haven't. My question to anyone is ...has anyone been told you your colon looks like this? Is that what a colon looks like if you have Celiac? I'm trying to figure out how strict I need to be. Do I need to worry about cross contamination or am I ok just staying gluten free. The gluten-free diet has helped alot of things...but I am still not feel as well as I would like. Don't mean to be melodramatic....it just feels like everyone thinks I am.

p.s when I had the colonoscopy done I had been gluten free for a couple months and then ate gluten right before the test. not fun. I have since been gluten free for about a year with some unitentional glutenings. Thanks for any input.

[RiceGuy]

I don't know what long-term effects laxatives would have on the colon, but I'd say chances are good that other members will have some answers for you.

As for the strictness - yes, CC is a real concern, even if you don't notice symptoms from it.

You're not alone about others around you thinking you are exaggerating or going overboard. It seems most people just don't get it. But, some analogies may help. For example, explain that gluten is to a Celiac as a cat is to someone with severe allergies to cats - they can't keep a cat in their home, and just visiting someone with a cat can bring on a reaction. They don't have to even touch the cat. Just being near it is enough. Or a ragweed or pollen allergy. It's in the air in microscopic amounts, but that's all it takes. So though gluten intolerance is NOT an allergy, there are some similarities in how sensitive one can be to the offending substance.

On eating gluten right before testing, that's not likely to ensure the accuracy, as it takes several weeks of gluten eating to just get the typical accuracy, which sadly isn't particularly high.

[kay777]

I don't know what long-term effects laxatives would have on the colon, but I'd say chances are good that other members will have some answers for you.

As for the strictness - yes, CC is a real concern, even if you don't notice symptoms from it.

You're not alone about others around you thinking you are exaggerating or going overboard. It seems most people just don't get it. But, some analogies may help. For example, explain that gluten is to a Celiac as a cat is to someone with severe allergies to cats - they can't keep a cat in their home, and just visiting someone with a cat can bring on a reaction. They don't have to even touch the cat. Just being near it is enough. Or a ragweed or pollen allergy. It's in the air in microscopic amounts, but that's all it takes. So though gluten intolerance is NOT an allergy, there are some similarities in how sensitive one can be to the offending substance.

On eating gluten right before testing, that's not likely to ensure the accuracy, as it takes several weeks of gluten eating to just get the typical accuracy, which sadly isn't particularly high.

Thank you for responding. My computer got a bad virus and it was being worked on all week. I have never taken laxatives so I don't understand why colon would look like I have...possibly from the gluten?

Thank you for the analogies. I guess I am trying to understand how sensitive I am to gluten. Is the colitis caused by the gluten and/or bacteria?....I'm hoping an appointment with another GI will be helpful. I have been trying to heal myself because I have pretty much lost all faith in doctors, but I don't seem to be able to figure this one out on my own and frankly some days I am tired of trying. Right now I am trying to do the best I can with taking care of myself and just letting go....letting go? Hum? Thanks again...sometimes it just nice to know I'm not alone....or crazy.

[ravenwoodglass]

A 'weak' positive is still a postive and you do need to be strictly gluten free. If you have had long term D that would give the same appearance to the colon that long term laxitive use would. That should heal. Hopefully the doctors let you know that you need to avoid gluten in your toiletries and that sort of thing also. Also double check your supplements and any meds if you haven't already. If you have been on generics or a OTC they can change binders any time.

Have you tried eliminating dairy? That is sometimes needed to heal fully. Many can add it back in after they heal enough. Also try to eat as simply as you can. No processed foods. Go with fresh or single ingredient frozen veggies and fruits, nuts, beans, and fresh meats with no added flavoring. One last note, many of us find that when we are gluten free alot of the stuff we consume has soy. Many of us are also sensitive to that and eliminating soy may also help a great deal.

It can be hard at times. Most doctors are really pretty useless when it comes to celiac. Hence the 'deer in the headlights' look we often get. I once thought of having 'But her labs were great' engraved on my headstone.

[kay777]

Funny...about the labwork....feels good to laugh! It took awhile to get the gluten out by making mistakes. Then when we had family over the summer for vacation I know I got glutened, not on purpose and wow did I get sick. Talk about moods! They may not want to visit again! After that I started eliminating dairy also. Just recently I started thinking about soy. This past week I had tofu....I wanted to see if it helped with the night sweats. Not sure....I think the best way to go, as you said, is to eat simply. After the doctor 's visit I felt discouraged. I thought if this isn't Celiac then what is it and why try soooo hard. I appreciate your response. I do think even though it is a weak positive it is positive and with my low regard of doctors as of late.....why does their response matter. Thanks again.

[kay777]

Funny...about the labwork....feels good to laugh! It took awhile to get the gluten out by making mistakes. Then when we had family over the summer for vacation I know I got glutened, not on purpose and wow did I get sick. Talk about moods! They may not want to visit again! After that I started eliminating dairy also. Just recently I started thinking about soy. This past week I had tofu....I wanted to see if it helped with the night sweats. Not sure....I think the best way to go, as you said, is to eat simply. After the doctor 's visit I felt discouraged. I thought if this isn't Celiac then what is it and why try soooo hard. I appreciate your response. I do think even though it is a weak positive it is positive and with my low regard of doctors as of late.....why does their response matter. Thanks again.