What To Do While Waiting For Endoscopy

[aliciahere]

So now that I'm diagnosed celiac by bloodwork, I am waiting for the endoscopy. The Dr. indicated that it could be "months and months" until mine is scheduled. Do I clear out my kitchen now, only to have it glutenated when I have to gluten challenge prior to the endoscopy? I'm thinking no, but I would love to get other opinions and to see what other people did. 

[cyclinglady]

My endoscopy was 7 weeks after my blood test results were given (my choice....best for my schedule). I kept eating gluten, but my main symptom was anemia so it wasn't hard to do. I didn't have horrible GI symptoms. I ate all my old gluten-containing favorites in excess. That was not good. By the time I had my endoscopy, I did develop some intestinal symptoms mostly from the huge amount I consumed -- I was a glutton for gluten! Hard to say what would be best for you.

Let's see how others respond.

[bartfull]

If it were me I would continue to eat gluten because for a lot if not most people, once you go gluten-free and then challenge, the symptoms are much worse. What I would do is slowly clean out the kitchen but eat all of my favorite things for one meal a day. I might have an english muffin one day, a doughnut the next, maybe make and freeze a lasagna so I could have individual servings. You don't have to eat a LOT for a challenge, just the equivalent of two slices of bread a day. So as you're cleaning the kitchen, keep your "treats" away from the clean part.

 

This will also give you a chance to replace the toaster, wooden spoons, cutting board, etc. a little at a time. Just don't break them out until it's done. And of course you can use up the mayo and other condiments instead of throwing them away.

[kareng]

Sound like you have time to crochet a Bed spread for a King size bed!

Sorry....just wanted to answer the title like that.

If you are going to get an endo, keep eating gluten. You might actually talk with the GI group and see if it is really going to be " months and months".

[aliciahere]

hehehe, Kareng, that's funny - love it!

 

I'm in Alberta and wait times for anything "not immediate life threatening" can take months and months, so I'm not surprised, but I will try to get in touch with them to see if it's true.

 

I guess I also am worried about the possible increase in damage and impact to my health (either scenario). I do have some gastro issues, but nothing that I couldn't deal with for a while. It's the mood issues, depression, ability to focus, that I'm concerned about having for months and months.

 

 

Scenario 1: I reduce my gluten intake, but don't eliminate it like I was on before the gluten challenge (I was 80% Paleo). I will still have antibodies active in my system, still have some damage to my intestines, still have some lingering health issues, though not as many as now. I bump up my intake two weeks before, slightly increasing the antibodies, and increasing the damage to my intestines, and impacting my health, though it probably won't hit me as hard because my system is still used to having gluten.

 

Scenario 2: I eliminate gluten as much as humanly possible. This will reduce the antibodies as much as possible, intestines start to heal a bit, most health issues will reduce. Re-introduce gluten two weeks before challenge. Get hit hard by sudden increase. Damage to intestines, antibodies will rise, though only slightly.

 

Scenario 3: Eliminate gluten now, and don't reintroduce prior to endoscopy. Damage may be gone by then, or greatly reduced. They would still get a type of baseline as to what my intestines look like...

 

Scenario 4: Skip the endoscopy, and just eliminate gluten. While this does appeal to me, I do believe that having a baseline record of what my intestines looked like would be valuable in case of issues in the future.

 

 

I can't figure out which scenario would cause the most damage to my health 

 

 

 

Uggggg.......perhaps I should have posted this in a separate thread..... lol

[ravenwoodglass]

Does your doctor consider you diagnosed? If so I personally would go with option 3 or 4. 

You say you were pretty much gluten free before you challenged to get tested. How did your body react to that challenge? Have you continued to eat gluten after you got the blood work taken? If your symptoms are not too bad you could continue to eat gluten. Keeping in mind that symptoms may get worse or new ones may appear. If your symptoms do happen to become severe do let your doctor know as some will tell you to stop the challenge at that point.

I don't know if they have cancelation lists there but if they do you could ask to be put on one to try and move up your appointment for the endo a bit. 

Best wishes no matter what you decide to do. 

[aliciahere]

Thank you raven, I really appreciate it.

 

My body didn't really like the challenge. Even before, with being mostly gluten free I was starting to become anemic (though controllable through supplements). I hated being on the challenge. I became gassy, bloated, had trouble focusing, easily distracted, mood swings. I got asthma at night during my period (I'm not asthmatic). It was getting worse by the end of six weeks. I was so happy to be diagnosed I almost cried. I've been booked in for a mammogram and ultrasound (at 34), as I have unusual tenderness in one breast (I believe it to be cysts). This developed within the last two weeks of the challenge (I believe it to be related). 

 

I believe that my Dr. does consider me to be diagnosed, but I'm gonna bring it up with him when I see him next week to review other bloodwork (thyroid, hormones/vitamins). He has asked me to go off gluten, then go on it for the two weeks before the endoscopy.

[nvsmom]

hehehe, Kareng, that's funny - love it!

 

I'm in Alberta and wait times for anything "not immediate life threatening" can take months and months, so I'm not surprised, but I will try to get in touch with them to see if it's true.

 

I guess I also am worried about the possible increase in damage and impact to my health (either scenario). I do have some gastro issues, but nothing that I couldn't deal with for a while. It's the mood issues, depression, ability to focus, that I'm concerned about having for months and months.

 

 

Scenario 1: I reduce my gluten intake, but don't eliminate it like I was on before the gluten challenge (I was 80% Paleo). I will still have antibodies active in my system, still have some damage to my intestines, still have some lingering health issues, though not as many as now. I bump up my intake two weeks before, slightly increasing the antibodies, and increasing the damage to my intestines, and impacting my health, though it probably won't hit me as hard because my system is still used to having gluten.

 

Scenario 2: I eliminate gluten as much as humanly possible. This will reduce the antibodies as much as possible, intestines start to heal a bit, most health issues will reduce. Re-introduce gluten two weeks before challenge. Get hit hard by sudden increase. Damage to intestines, antibodies will rise, though only slightly.

 

Scenario 3: Eliminate gluten now, and don't reintroduce prior to endoscopy. Damage may be gone by then, or greatly reduced. They would still get a type of baseline as to what my intestines look like...

 

Scenario 4: Skip the endoscopy, and just eliminate gluten. While this does appeal to me, I do believe that having a baseline record of what my intestines looked like would be valuable in case of issues in the future.

 

 

I can't figure out which scenario would cause the most damage to my health 

 

 

 

Uggggg.......perhaps I should have posted this in a separate thread..... lol

 

 

I'm in Alberta too, and I chose Scenario 4.  My tTG IgA and EMA IgA were both quite high, I had many symptoms for years, had celiac disease in the family on both sides, and had just bee diagnosed with thyroiditis.  I knew that the wait to see the Gastro was about a year (this was 3 years ago) so I skipped it.  My thinking was that I was 99% sure I had celiac disease so I didn't need it.  I figured that if I continued to have problems in a year or so, then they could scope me then.  At least at that point we could be sure any damage that was there was not caused by gluten because I planned on going gluten-free immediately.  

 

My GI symptoms improved in the first few months so I never did have the endoscopy... actually, I still have never seen a GI specialist.  I didn't really need one though so I'm fine with that.

 

If you do go gluten-free and then do the endoscopy, many guidelines recommend 1-2 slices of bread for 2-4 weeks prior to the procedure.  Two weeks is the minimum according to most doctors.  If you only do 2 weeks, it would be best to eat gluten heavy - two slice, or even three slices, of bread per day.

 

Best wishes in whatever you decide to do.  

[nvsmom]

Oops, I forgot to add that I also chose to skip the endoscopy because they can miss celiacs (up to 20% of celiacs) and I didn't want a false negative biopsy to muddy up my determination to eat gluten-free.  I didn't want to risk the false negative result.