nervous about doctors:(

[ollieotters]

hello:) 

ive been gluten free for awhile now but i’ve been getting worse and my mom is saying i have symptoms similar to chrons disease, we’re going to the GI doctor soon and i’m just, nervous about it, i don’t know how to feel about it and it seems like a scary place:( does anyone have any advice for how to get over my anxiety of the doctors or whether or not i should be worried about chrons:( 

thanks , ollie 

[trents]

Welcome to the forum, ollieotters!

Have you been tested for and officially diagnosed with celiac disease? I'm not clear on whether you are eating gluten free because you have been diagnosed with celiac disease or just have been just trying out gluten free eating in order to address your GI distress. Some people have "refractory" celiac disease and don't seem to improve with gluten free eating. Other celiacs also have other intestinal disorders such as Crohn's in addition to celiac. 

Having said that, recent studies show that most people who think they are eating gluten-free are really not. They are actually eating a low gluten diet because of ignorance of how gluten finds it's way into the food industry or they are careless about cross contamination. This is particularly true of those still eating out.

[ollieotters]

1 minute ago, trents said:

Welcome to the forum, ollieotters!

Have you been tested for and officially diagnosed with celiac disease? I'm not clear on whether you are eating gluten free because you have been diagnosed with celiac disease or just have been just trying out gluten free eating in order to address your GI distress. Some people have "refractory" celiac disease and don't seem to improve with gluten free eating. Other celiacs also have other intestinal disorders such as Crohn's in addition to celiac. 

Having said that, recent studies show that most people who think they are eating gluten-free are really not. They are actually eating a low gluten diet because of ignorance of how gluten finds it's way into the food industry or they are careless about cross contamination. This is particularly true of those still eating out.

hello!:) thank you, 

i have been officially diagnosed and i’m trying my best to not have any gluten or cross contamination, i have my own toaster and separate condiments such as butter from my family, but my moms concerned because i’m feeling different pains from when i would eat gluten, (she’s a nurse so i only get worried when she’s worried) i also try not to eat out at all just because of how easy the cross contamination is especially when restaurants don’t really understand celiac disease, if i do go out to eat it’s usually asian foods because of rice and rice noodles:) i’ve been in and out of doctors my whole life but i’m just really nervous about the GI doctor because i’ve never been ,

[trents]

Asian food typically has soy sauce and wheat is an ingredient in most soy sauces.

We also know that autoimmune diseases tend to cluster. Celiacs are at a higher risk for Crohn's than people in the general population.

It is also true that celiacs tend to develop intolerances to other, non-gluten foods that can mimic the celiac symptoms. Soy, dairy and corn are chief among them but many celiacs are also reporting egg intolerance. I have developed egg intolerance in the last few years after eating them all my life. I can eat one egg occasionally without issue but if I eat too much egg it gives me a huge gut ache. And, there are some recent studies that show the dairy protein called casein causes villi blunting in some people similar to how gluten does. Have you looked at the possibility that your issues are being caused by some other food?

Edited July 21, 2021 by trents

[RMJ]

Hi Ollieotters,

Based on another post of yours, I think you were just diagnosed a month ago? That is a very short time for those of us healing from celiac disease.  It is extremely common to still have issues/pain, and to have slightly different issues since your diet is different now (gluten free).  It is way too soon to worry!  Your mother is probably worrying because she IS a mother and doesn’t like to see her child in pain or having discomfort.

As to nervousness about a GI appointment - I can understand.  I’m nervous the first time I see any new doctor. I write down my questions in advance so I remember to ask them all. For the GI, at the first appointment you’ll probably just talk.  It would be very unlikely that they would start poking and prodding in embarassing places.

[Wheatwacked]

According to one study:

71% of people with celiac disease had high levels of state anxiety.

24% of the control subjects had high anxiety levels.

26% of the newly diagnosed celiacs showed anxiety as a trait.

15% of controls showed anxiety as a trait (that difference, however, did not reach statistical significance, meaning it could have been due to chance). https://www.verywellmind.com/gluten-and-anxiety-562313

I have anxiety over doctors, dentists and even barbers, job interviews, new stores, meeting new people. Take some deep breaths and go. Try to avoid predicting what will happen. Dr Amen calls them ANTS Automatic Negative Thoughts.

Ask your new doctor what foods you should eat for recovery. Tell him what foods you like. Make a list of what you eat and how it makes you feel. Celiac is a disease of malabsorbtion There are seven vitamins and minerals directly affected. Diahrea causes potassium depletion. It is not your fault.

 

[Kate333]

Hi Ollieotters.  Don't sweat the GI appt.  GI docs are identical to general, family docs except more advanced, specialized training focused on digestion issues.   You will likely just sit in the office and describe your symptoms.  No reason to be scared or embarrassed.  These docs have heard and seen it all...:-).  As for any future tests they may recommend, the 2 common ones are upper endoscopy and colonoscopy.  In both cases, you will be blissfully asleep during the brief procedures, so no worries.

BTW, your anxiety seems to be pretty high, not at all unusual for folks newly diagnosed with celiac disease or for most of us constantly living in this pandemic. Many digestion symptoms are commonly caused, or worsened, by chronic, high stress, esp. important to consider if you have been strictly gluten-free for a long time and are still having GI issues.  I urge you also discuss your your anxiety with the doctor and perhaps even request a referral to a MH doc who can set you up with anxiety support groups and even prescribe medication, if needed.  I belong to a weekly online anxiety support group, which has helped me immensely.

Best of luck to you on your healing journey!