Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Seeing The Gi Tomorrow
0

9 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

Good luck. Let us know how it goes.  :)

0

Share this post


Link to post
Share on other sites

Good Luck Jamie!

 

Thanks Nicole!

 

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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".

 

http://www.hopkinsmedicine.org/healthlibrary/conditions/digestive_disorders/celiac_disease_85,P00361/

 

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.

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,109
    • Total Posts
      920,400
  • Topics

  • Posts

    • I will visit  Johannesburg  international airport, is there any gluten free food available? The so called customer service office did not answer my question! So I am taking it to the forum. If you know of any restaurants inside the airport please let me know.  
    • I will visit Beijing international airport, is there any gluten free food available? The so called customer service office did not answer my question! So I am taking it to the forum. If you know of any restaurants inside the airport please let me know.  
    • Instead of going to my doctor I went to theranos to get a celiac blood test done. Doctors never seem to want to hear about you diagnosing yourself so I decided against going to the doctor . So my symptoms are/were being bloated after eating, stomach pain, constipation, also diahrea (my poop is always green ik tmi), bad anxiety, depression, irritability, insomnia and anger after consuming a big meal of gluten, I also have a rash on my right leg below my butt I don't think it's dh tho, I'm always thirsty (like I can't get enough water), dizzy spells (fainting and blacking out), my left side of my face tingles (could do with anxiety), my face also feels hot after consuming gluten, I have acne, hip pain and shin inflammation, back pain, and dandruff. My theranos results came back negative with everything ranging from 0-3 so it was super low. I had the celiac panal done. Well anyways I thought maybe it's wrong and went off gluten anyways. This is my 6 day gluten free and my symptoms haven't resolved at all really. My bloating has lessened a tiny bit but I still get bloated after every meal. And im constipated all the time. My poop stopped being green though. I'm not eating dairy right now either. I'm also having worse anxiety and am still depressed. If Im gluten sensitive shouldn't I be feeling better by now? I also live in a house with gluten eating people sense im only 15 but I try hard not to cross contaminate. I eat lots of veggies  (Kale and salads) and lots of nuts and beans and indulge salmon and tuna a few times a week and eat quinoa every morning for breakfast. I'm scared I'm not gluten sensitive and I don't know what to do. 
    • Hello! My daughter was diagnosed with Celiac non-biopsied about 6 months ago. When I recently went for my physical, I mentioned to my PCP that my daughter was Celiac, she said that I need to be tested. I took a blood test that day and here are the results: Anti-Gliadin IgA                     Gliadin Ab(s) IgA - 18.23U/ml    -      Standard Range: 0-15 U/ml   - Result: Positive My PCP told me to start a gluten-free diet right away and she will re-test again in 6 months. I was expecting a full panel, like my daughter had, not sure if it is necessary or not. We elected not to put my daughter through a biopsy, as she was just recovering from a ruptured appendix and her GI Dr. agreed that he numbers were so high that she was fairly certain w/o biopsy that she was Celiac. My DD feels so much better. Do you think this test is enough for me to start the gluten-free diet? I actually have cut way back on gluten, as I somewhat eat what my daughter eats. So my test may have reflected that decrease. Should I ask for more testing? Is this test sufficient? Thanks for any assistance!!  
    • That's hard.  You can try the "I come to be social,"  "I have serious food allergies", "I only come to drink"...... whatever might feel comfortable.  I know celiac is not an allergy but more people understand if you say celiac is like a severe food allergy.  Do go, have fun.  Don't let food stop you.  Yes, people give looks but honestly they get to know that this is just you and hopefully they will come to accept it. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,145
    • Most Online
      1,763

    Newest Member
    bradlost
    Joined