Seeing The Gi Tomorrow

[Soccer-Mom2405]

Finally, my appt is almost here!!!  Not exactly sure what to expect tomorrow but glad it’s almost here.  Made this appt at the request of my doctor after my blood tests came back negative but genetic tests were positive.  Low carbed for 6 weeks prior to blood tests and felt great.  Ate “normal” for 2 weeks before giving up and having the blood tests.  I know I should have eating gluten longer than 2 weeks.  After several late night episodes, I hastily made the decision to have the test done then.  Now, I’m just ready for a diagnosis (good or bad) so I can move on.  I have felt so bad for the last 4 weeks.  Tired of being tired and feeling puny all the time.  Tired of the many gastro issues.  Tired of the all it.  Uuuggghhh!!!!!

 

Sorry…I know I’m whining.  L I’m beginning to feel like Debbie Downer.

[moosemalibu]

Good luck with your appointment. I too am sick and tired of being sick and tired and the GI issues... I'm ready for that to resolve too.

 

This is the place to go to when you need to vent your frustration. Sometimes I feel guilty about talking about my disease - I can't change it and it effects daily life - it's hard not to talk about. But the non-celiacs are probably going to get tired of it. My mom advised me last week to "not talk about the diet so much with Phil(my boyfriend) because it may push him away" Thanks mom. And btw - Phil is supportive and has fully accepted with enthusiasm the gluten-free household rule. Bless him. Now once I remove all the cross contamination issues (mostly tupperware, cooking utensils (wood) and nonstick pans) I think we are finally going to be on the right track.

[nvsmom]

Good luck. Let us know how it goes.  

[Soccer-Mom2405]

Good Luck Jamie!

 

Thanks Nicole!

 

I had my son's blood tests done today.  Should knows those results in 2 weeks.

[Soccer-Mom2405]

Sorry for that rant and Sorry this is long.

 

A little disappointed in my GI doctor and who knows maybe he's right with everything he said but it just didn’t sound right and then again I’m no expert. 

 

We discussed all my symptoms and he reviewed my blood tests results.  He explained that just because I have the genes does not mean I have celiac disease, which I already knew.  Then, he said you must have 3 things to get diagnosed with celiac disease: 1) symptoms, 2) positive blood tests, and 3) positive biopsy.  He said since I didn't have a positive blood test, then he doesn't think celiac is my issue and started discussing fibromyalgia and crohn’s disease.  Kept pushing those even when I explained that when I ate low carb, I had NO ISSUES… NONE.  Now correct me if I’m wrong because I know nothing about crohns disease or fibromyalgia but would eliminating carbs correct crohn’s or fibromyalgia? 

 

Fibromyalgia - really??  I don’t think so.  My back hurts because I have bulging discs and degenerative disc disease and my knees hurts because I have too much weight on them and my patella’s sit too high (both my children have the same issue and must wear braces for sports).  He wouldn’t listen to those reasons.

 

Crohn’s Disease – not sure.  After looking it up in the internet, I have some of the symptoms but not many.  Mainly abdominal pain and cramping.

 

He has set me up with an upper and lower GI and told me if both of those didn't find anything then it's probably just IBS.  Told me I was probably lactose intolerant and how to do a self test on that.  We discussed the possibility of a vitamin D deficiency and told he to have it checked the next time I had blood tests done.  I asked what other vitamins I should check and he said none.  Vitamin D was the one he thought I was low on.

 

Am I crazy?  Should I be concerned or not?  I feel like because my blood tests were negative, he has already made up his mind that I don’t have celiac even if the biopsy come back positive.

[bartfull]

Show him this from Johns Hopkins, and point out that at the bottom of the list of symptoms there is a bit about how some people are asymptomatic. Ask him to google "silent celiac". Then ask him to google "false negative celiac blood test".

 

Open Original Shared Link

 

Or better yet, find another doctor.

 

Or you could just go gluten-free on your own. Many of us are self-diagnosed. Since you know you have the genes you already are aware that your first degree relatives are at risk. Unless you think a definitive diagnosis will help you stick to the diet, you don't need a diagnosis, IMO.

[Soccer-Mom2405]

I've already made up my mind to eliminate gluten regardless of a diagnosis and I agree with the new doctor.  I was very disappointed with him.  I completely understand that celiac may not be my issue but for him to disregard it so quickly was very aggravating.  I think I will stick with having the upper and lower GI Tuesday, couldn't hurt since I've never had either of them. 

[nvsmom]

Good luck with the scopes. Hopefully the results will be very clear one way or the other. If you can, try to push for many samples to be taken - I believe six or more is considered adequate. Try to eat some gluten over the weekend if you are able...

 

Hope it goes well.

[Soccer-Mom2405]

Thanks Nicole.  That is the one thing I failed to ask yesterday, the number of samples he would take.  I will find out before having the scope.