GI visit was a bust

[darcijj]

Well I got a letter from the GI doc saying my tests were normal so I do not have Celiacs... I did testing at Entero labs.. and funny thing is their results came in the same day too.

Their tests said my anti bodies and absorption tests are normal.. one value for the antibodies was a >10, mine was a 9.. so I am at the high end of normal. it also said 1 in 500 people do not make the antibodies anyway.

I did have the gene test.. and they came back with:
1 Gene for Celiac
2 for Gluten Sensitivity.

I have been gluten free for a month now.. difference is like night and day.. so I am continuing with the gluten free diet despite the gastro saying I don't need to.

I also canceled the colonoscopy.. I do not want him to do any more tests and I am not going back for any follow ups. I have my answer and do not need any more tests!

[aklap]

Hey Darci,

Glad you decided to go GF anyway!! It's good that you had the testing done regardless. However, it might not have been a bad idea to have the colonoscopy done anyway - they could've looked around just find any other colonic diseases. Polyps, diverticulae, check for colitis, etc...

Good luck in your GF Journey!! Here's to a happier, healthier you!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[superdog]

glad you are still gf. i have read alot of stories where people get tested, as they have all the symptoms, and the tests come back negative, they have the test again, still negative, and one lady after 15 years of problems finally had hers come back positive. i say do what your body knows it wants and doesnt want. noone knows our bodies like we do, and the blood work is not always 100% as per alot of stories i have read. i personally went gf before my bloodwork by mistake.....eating carrots and celery, and some cleansing course that happend to be gluten free. so my tests were scewed and i didnt even know it. i did however figure out at first that if i didnt eat i felt great, then i introduced veggies and fruits.
_________________
Gluten is my cryptonite

[Luv2Dance]

I talked a lot to my doctor about this. My blood tests came back negative. I have all of the symptoms, my Enterolab came back extrememly high positive. He explained it to me this way: When we eat, our food goes through our digestive tract into the intestines, where it is digested, and absorbed. Our food is not acutally absorbed in the stomach or anywhere else in the body. Therefor; our intestines are the first place where the anit-bodies show up, which is why a lot of people get negatvie blood tests, but positive Enterolab tests. This means that they are indeed gluten intolerant, but that the villi in the intestine has not gotten so detroyed that the anti-bodies are crosssing over into the blood. He said that it takes 15 to 20 years of consistently eating gluten containing products to completely damage the villi that would show up in a biopsy. He said that the anti-bodies don't necessarily cross over into the blood until the intestines are ALREADY extremely damaged. The biopsy does not show positive Celiac disease until the intestines have been damaged, and have been getting damaged for a good 15 years. Therefore, the person has already been suffering for all those years. Some of them have it with no symptoms, what we call "silent damage." Others, like many of us have all of the wonderful and fun *sarcasm* symptoms that lead us to early testing. If the Enterolab is positive, we are certainly gluten intolerant, and need to avoid gluten or suffer the consequences. If our blood tests are negative, its because we haven't gotten to the extent of damage, or its a false negatvie as can happen so many time.
For me, he said that my "formal diagnosis" would be gluten intolerance because I do not have the blown intestinal damage as is the definition of Celiac disease. But for easy explanation and I think to stick in my head to not fall of the gluten wagon ever agaon, he said I have a "form of celiac disease."
I'm really sorry if the was repetative. I've been really sick, and my mind isn't working well. I hope this helps explain things.

[voix]

Okay, that was helpful. My question has always been: in relation to gluten intolerance, is celiac a diagnosis of a symptom (like pneumonia) or is it a separate disease (like shingles after chicken pox)? Is it further along the continuum of gluten-caused damage, or is it a fork in the road away from gluten intolerance?

I think your doctor answered that question.

[Luv2Dance]

Yeah- Celiac is the disease caused by eating gluten continuoulsy when one is gluten intolerant, as diagnosed by the villi damage.

[cardine45]

[Fifi]

Even after an hour long explanation, they still won't get it. I was at church with my Mom and she was so upset that I couldn't take communion. All she kept saying was can't you even have a tiny piece... All we can do is continue to stay on our plan, and when they see we are serious about it then they may start accepting it. They probably think this is like the millions of diets that I have been on, and that I won't stick to it. Cheating on CD is a lot worse than cheating on a regular diet. A regular diet you just gain weight, cd you get physically sick. Eventually they will get it, but it won't be easy. Stay determned and hold your ground.

[ostrich]

Good question Cardine. I think the problem with saying you're "gluten intolerant" is people parse it like "lactose intolerant". People who are lactose intolerant can 1) technically ingest lactose without dying and 2) can usually take a pill that helps them digest lactose. AKA it comes off as a flimsy excuse for not eating your mom's home-made bread.

Sadly, I'm not sure what you could say to get these people to believe you. If I were you I'd probably just say "I'm sorry, I can't ingest gluten. Man, this weather's been crazy, huh?" Try to divert the topic.
_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

[cruelshoes]

[Luv2Dance]

Yeah, I agree that children can have the villi damage, so I totally agree that it is not ALWAYS the case that it takes 15 to 20 years for villi damage to occur. I think that for those children, they were so severely allergic right away, it probably happened a whole heck of a lot faster. I think you are right in saying that everyone is an idnividual, and the damage can happen a lot faster.

I think there are spectrums of the disease, spectrums of the damage, spectrums of the symptoms, like we have scene. I think that's why there is such a hard time diagnosing it and that a lot of medical doctors don't really accept it yet.

My doctor also explain a lot about the genetics. He was hypothesising that they are going to come up with Celiac "types" like they did with some other diseases. Type 1, type 2, and so forth. based on what they discover in the genetic realm and by studying the symptoms and the villi damage. But he also said that since the villi damage doesn't happen for 15 to 20 years for some people, the studies are realy hard to do. If they use a "control group" or people "without" celiac disease, how do they know they aren't suffering from the silent damage that is not evidenced yet? How do they formally know that they are not gluten intolerant already? Just because there blood tests say so doesn't work. Therefor, running studies of known celiacs against supposed non-celiacs is really hard to do. The evidence is really hard to get.

I think for some of us, the gluten and possible other food allergies (like dairy, eggs, garlic, and some beans for me) cause a heck of a lot of symptoms up front, but take longer to cause the villi damage. And others suffer the slient damage and don't know until its to late. For me, perhaps I am"more" allergic to dairy and eggs than I am to gluten. That's why it didn't show up in my blood yet. But maybe not. The dairy and eggs cause the immediate reaction, but the gluten causes the long term damage. And then others yet, like the children, are so severely allergic, and maybe have all the genetic predisposition, that their villi damage is almost immediate. But what else could have been involved? I don't know. I'm no scientist.

Anyway, as far as communion goes, my friend suggested that I take a small peice of gluten free bread or gluten free cracker so that even if I can't take theirs, I can still share in the ritual. Its the ritual that's important, not what the bread is made out of. I'd explain it that way. I'd take my own, and remind her of what Jesus stood for, and the equality of us in Gods eyes, not the fact that we have to do it all exactly the same way by accepting the bread from in front of us, but that we accept the ritual with our hearts and good intentions. God sees our hearts. He knows what we beleive and mean. That's what's important.

As for what to call ourselves, I tell my family that I have Celiac Disease, even if I don't have the biopsy to prove it, so that they take me seriously. I have found that saying Celiac disease doesn't work with uneducated people and I have to explain it for an hour anyway. So with them, I say I have "very serious food allergies." And I stress the "very serious." So far, I'm still experimenting with wording though. I haven't quite got it down yet. What do you guys say?