Endoscopy Necessary?

[ginarino]

I was diagnosed with Celiac through a blood test. My doctor was checking my thryoid levels and tagged the Celiac test on because I mentioned I was having heartburn and acid reflux that had gotten better when I cut back on gluten. My thryoid levels were normal, but he noticed my thryoid was swollen when he examined me with his hands. I was referred for an ultrasound that revealed two nodules which were later biopsied through an FNA.

 

I was later diagnosed with Thyroid cancer and have been dealing with the emotional fallout from that. I am too overwhelmed with that, my final semester of grad school, and my demanding freelance work to seek out a doctor for the Celiac right now. I have been 100% gluten free and all of the symptoms of Celiac that I didn't even know I had are in the process of going away or are totally gone.

 

I plan to stay gluten free for life, but am wondering what the benefits are of seeing a gastro doctor for this? If I say I don't want the endoscopy (I don't feel it's necessary and I refuse to eat gluten again for 4-6 weeks simply for this test when I know what it's doing to me), will he still refer me to a nutritionist and to other specialists for testing of associated conditions? I am particularly worried about my bone density. I am 30 and in otherwise good shape, but the thought of having another condition (I suppose cancer is the first) caused by living for so long with undiagnosed Celiac is scary to me.

[nvsmom]

You don't need to see a GI specialist except if you want that endoscopy (I skipped that, and the Gastro, too).  Your GP should be able to order the follow up tests for you.  

 

Request the bone density scan.  It's a good thing to check.

 

Request nutrient levels are checked.  Ask for: D, A, B12, Ca, K, Mg, Zn, Cu, folate, ferritin.

 

Daibetes (T1) and thyroiditis  are the most common associated conditions  with celiac disease.  Your cancer risk was just slightly elevated while living undiagnosed.  Once you are healing, and your inflammation levels fall,  your risk of cancer will fall back to normal range.  It really is one of the less common complications of celiac disease.

 

Genetically, you are at a higher risk of developing other autoimmune diseases, but staying gluten-free will lower that risk as well.  Just be aware of future symptoms if they pop up, and have them looked into.  Try not to worry too much.  Most of us celiacs who have multiple autoimmune diseases developed them while we were living undiagnosed.  Living gluten-free will help you in the long run.  

 

Best wishes.

[murphy203]

I wouldn't -- there're newly widely publicized risks with endoscopies because the tubes are hard to sterilize. Its one more procedure you proabably don't need while you deal with the thyroid situation, and the blood tests are very specific. You are the first person to report heartburn and acid reflux as a primary symptom since I've neen here for the past month. I was dxd from anemia, but as soon as I was gluten-free -- like, the first night -- MY heartburn and acid reflux went away.

I'm sorry about the thyroid cancer, **especially** at your age. I was in college also when my thyroid stopped working. The good news is that replacement hormones are available and effective. My advice on that front is to buy a pill tracker at your local pharmacy that places a pill in for each day of the week or two so you can see if you forget one. Like your grandparents use, haha. I still miss pills until I notice in the afternoon when glancing at my tracker -- 30 years later!

[ginarino]

You don't need to see a GI specialist except if you want that endoscopy (I skipped that, and the Gastro, too).  Your GP should be able to order the follow up tests for you.  

 

Request the bone density scan.  It's a good thing to check.

 

Request nutrient levels are checked.  Ask for: D, A, B12, Ca, K, Mg, Zn, Cu, folate, ferritin.

 

Daibetes (T1) and thyroiditis  are the most common associated conditions  with celiac disease.  Your cancer risk was just slightly elevated while living undiagnosed.  Once you are healing, and your inflammation levels fall,  your risk of cancer will fall back to normal range.  It really is one of the less common complications of celiac disease.

 

Genetically, you are at a higher risk of developing other autoimmune diseases, but staying gluten-free will lower that risk as well.  Just be aware of future symptoms if they pop up, and have them looked into.  Try not to worry too much.  Most of us celiacs who have multiple autoimmune diseases developed them while we were living undiagnosed.  Living gluten-free will help you in the long run.  

 

Best wishes.

Thank you! I am worried about the Diabetes... that is in my family too. I've cut back quite a bit on sugar and I do feel much better.

[ginarino]

I wouldn't -- there're newly widely publicized risks with endoscopies because the tubes are hard to sterilize. Its one more procedure you proabably don't need while you deal with the thyroid situation, and the blood tests are very specific. You are the first person to report heartburn and acid reflux as a primary symptom since I've neen here for the past month. I was dxd from anemia, but as soon as I was gluten-free -- like, the first night -- MY heartburn and acid reflux went away.

I'm sorry about the thyroid cancer, **especially** at your age. I was in college also when my thyroid stopped working. The good news is that replacement hormones are available and effective. My advice on that front is to buy a pill tracker at your local pharmacy that places a pill in for each day of the week or two so you can see if you forget one. Like your grandparents use, haha. I still miss pills until I notice in the afternoon when glancing at my tracker -- 30 years later!

Thank you so much. I am a little worried that there could be gluten in the pills I have to take post-surgery for pain as well as the hormone pill I need to take everyday for the rest of my life... Having to eat hospital food during my treatments also scares me. I have to be quarantined in the hospital for three days while taking radioactive iodine to kill remaining thyroid cancer cells. There are so many things being thrown at me right now and it's all terrifying...

[ravenwoodglass]

I hope things go as smoothly as possible during your treatment. Have your doctor make sure he notes on your chart that you are gluten free. The pharmacist can check your meds for gluten and you might want to have a talk with the pharmacy before the day you go in for treatment. It also might be a good idea to check with their Nutritional Services dept. ask to speak with or get a call back from the Head Cook or Dept Manager. Sometimes folks will have freinds or family bring in safe food but don't know if that would be an option.  

I hope you are feeling much better soon. 

[nvsmom]

Thank you! I am worried about the Diabetes... that is in my family too. I've cut back quite a bit on sugar and I do feel much better.

 

It's the type 1 diabetes that celiacs are at higher risk of getting. Type 2 diebetes (adult onset - usually due to obesity) has the normal risk for us... which is still not exactly low now a days. Celiacs with type 2 diabetes should keep an eye on it though because it could be type 1 misdiagnosed.

 

It's tough cutting back on sugar.... good for you!

 

Best wishes.

[Zebra007]

Gosh you have a lot on your plate!..with regards to the hospital and food,  I think I would ask a family member to bring in something just to be on the safe side, because what happens is that the longer you go without Gluten, the harder your body reacts to it when you have a slip up, you may well find they are well organised, but they might not be, and the last thing you need is to feel ill from being gluttoned.

 

I wish you well.