Archive for the ‘Ciliac Disease’ Category

Clean Tests, But A Lot of Pain

February 1st, 2011 Comments off

As mentioned before I had my stent in my esophagus replaced last Wednesday. Aa a part of every EGD to replace the stent my GI doctor does biopsies to make sure the cancer has not come back. He also checks my small intestine to see how the villi are doing from me having celiac disease.

In both cases everything looks good – no sign of cancer and my villi have all grown back so their is no sign of celiac disease. That does not mean I can now eat gluten but does mean that my body has healed itself and is absorbing nutrients like it is supposed to now.  This is good because it means that I get more out of the food that I eat then ever before.

Throat Pain

Unfortunately with all that good news I am not feeling all that great. When my GI doc removed the old stent I bled – a lot. Then, when placing the new stent he put it in a little different position (on purpose) and therefore my throat is not used to having something there and so it hurts.

I was OK in the hospital when they had me on morphine for two days but for the last 3 days I have been on vicodin and it is not cutting it. I went to a pain management appointment yesterday morning and they gave me something different that is supposed to be in between vicodin and morphine and should last longer. I took it last night and it does help without making me feel out of it like the morphine and the vicodin do.

I was a little concerned with the amount of pain I have been in the last few days but my wife reminded me that when my first stent was put in that it was a very similar experience. Funny, that was less then 6 months ago but I had forgotten. If this time is similar then it may be a few weeks before all of the pain goes away. I made it through the first time though and will make it through this time as well.


Thanks again to everyone for their prayers and good wishes. Your encouragement is greatly appreciated.

More Changes – Ciliac Disease and a Gluten Free Diet

April 19th, 2010 Comments off

As mentioned in my post on Friday it has been confirmed that I have celiac disease. The weird part about celiac disease is that it is more of an allergy then anything else. I guess they may call it a disease because there is no cure for it. There is a treatment though and that is a gluten free diet.

When I was at my appointment with my GI doctor on Friday I asked him if my esophageal cancer could have been related to my celiac disease. At the time he said no. But, later that afternoon he called me to say that he could be wrong. After I had left my appointment he was so perplexed about my case that he started doing research. In his research he found a study in Europe that did link Celiac disease to possible esophageal cancer.

Needless to say that motivated me to look into this gluten free diet a little more.

My First Day as Gluten Free

My first day of my gluten free world was the next day – Saturday. It started out terrible.

I went downstairs to eat breakfast and realized that I could not have any of the 5 different types of cereal when had in the house since they all had wheat in them. I proceeded to cook (let’s say try) some hash browns and sausage – they were terrible because I am not the best cook.

From there we were out all day doing things with the kids. The only things I found during the day that I could eat was some popcorn and Cool Ranch Doritos. By 5pm I was hungry and hating life. This gluten free thing sucked!

I decided that there had to be food out there somewhere for me to eat so I turned to Google. A few short searches later and a visit to some of my favorite restaurant’s websites my sanity was restored. Chili’s, Pei Wei, Chipotle, and Freebirds all had gluten free menus. I opted for Chili’s and gorged my self with a strawberry lemonade and their Margarita Chicken (without the tortilla strips). The best thing about this is that I usually got the Margarita Chicken at Chili’s anyway.

After I ate I went to the grocery store and spent some time reading labels and ended up with: Read more...

Categories: Ciliac Disease, From the Network, Health Tags:

My Visit with My New GI Doctor

April 16th, 2010 Comments off

I just got done with my visit with my new GI doctor. I felt that the visit went really well.

This is what he said about:

Cancer Stuff

  • He is perplexed how someone my age could get the cancer that I got. At first he thought I was 43 and was blown away even more when I said I was 34.
  • He really doesn’t know if it was GERD that caused it or not.
  • He said cancer can spring up anywhere anytime in anyone.
  • It is normal to assume that GERD is a precureser to cancer but maybe not in my case.
  • He thought it was a bold move not to do surgery.
  • Her agreed that surgery was major and that I would permanent side effects from it.
  • Other then the two points above about surgery we didn’t talk too much about it.

GERD Medication

  • He thought it was really weird that I had the side effects from Prilosec and the other medications in that class.
  • I asked if I should be taking the current medication I am taking and he said sure but he does not know if it will help.
  • He is not even sure that I need to take anything but try it and we will see the results
  • I told him about what DR Godel said about the current medication and my body getting used to it where it would be ineffective. He said that does happen some times but we would have to see in my case.

Ciliac Disease

  • Yep, I have silent Ciliac (not latent like I thought)
  • Should I go on a Gluten Free Diet? Yes, it would be a good idea.
  • He said it is a good idea because you generally do not want parts of your body to be irritated on a regular basis the way that my upper bowl is.
  • Could I not go a Gluten Free diet? Yes, but there are the risks associated with that. He too said that while cancer in the bowl is a risk that he has never seen it before.
  • I asked him about how strict you have to be – in another words if I accidentally have something with Gluten is it going to set me back to square one – He said no – the gluten irritation would be in proportion to the amount of gluten I have – it is not an all or nothing thing. If I wanted to have something with Gluten here and there that would be OK.
  • He said that he would like to see me go on the Gluten free diet to so we can see what a healthy upper bowl looks like at my next EDG.

Another EDG

  • He thought having one in August was a good idea and every 6 months from there in out
  • I asked if he thought we should have on sooner. He said no. There are no symptoms or any reason to warrant that.

My Take

I like the doctor. Honestly I am not sure if he told me anything different but he did communicate it differently. He said that he could NOT put me in a box and say “this” happened because of “that”. I really liked that because I felt my previous doctor was putting me in that box. He did not have answers for me which in a weird way comforted me. To me that means that he is really looking at all my stuff and seeing that it really does not add up like it does for most people.

I told him about my dry throat and what the ENT doctor said – treatment related. He said that when a person has cancer and then treatment that the natural DR response to anything after the treatment is that it is “Cancer or Treatment” related. He said that he couldn’t do that in my case because everything else was so weird in my case (cancer at my age, no GERD, my recovery, etc). He said my case is so unique that we just have to see what works for me and what doesn’t.

I feel better about going Gluten free after talking with him. I am interested now about seeing how things look at the next EDG in August. Starting now I will stay away from bread products and when I get the chance I will try to look at so books about Gluten free. For whatever reason it does not seem as hard now as before. I think that may be in part because you do not have to be so strict. If you happen to have some Gluten then it is not the end of the world.

I will take the acid reflux medication I have now everyday.

From here I think I just need to do what I know is right – take my medication, eat at regular times, try the best I can to Gluten free, and don’t get stressed out. In August I will get the EDG and the PET and see where we are at. My prayer and expectation is that things look even better then compared to my last tests. If anything comes up between now I will go to the doctor if it is necessary.

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Post Cancer Treatment of Other Stuff

March 24th, 2010 Comments off

Now that the cancer thing is pretty much over and done with I get to visit other doctors about various other items.

One doctor I am waiting to see is a hearing doctor since I now have constant ringing in my ears. From what I have been told this is probably a side effect of the chemo drug Cisplatin :-( . The good part about this is that during the day I don’t really hear it. It is only when things are quiet (which isn’t all that often). I don’t want to go deaf though so I am having it checked out.

The other doctor that I am visiting is the GI doctor. This is the guy that goes down your throat and up your backside to make sure things look good. I am glad I haven’t had the latter test yet ;-) . The reason I am seeing him is that is where the cancer was so we need to keep an eye on it.

One thing this doctor says I have is acid reflux and that is what probably caused the cancer. Fair enough, that makes sense other then the fact that I am no symptoms of acid reflux. No heart burn, no upset stomach, etc. Nothing. The only time I have any of these symptoms is when I take the medicine that he gave me for acid reflux – then I feel like I have it.

The other item that he says I have is ciliac disease. This is because although I did not have a positive biopsy for ciliac (it wasn’t positive but abnormal) my blood test shows elevated antibodies, etc, etc. The common side effects of ciliac disease are weight loss, malnutrition, anemia, etc to which I have none of these symptoms. The doctor says that I should go on a Gluten free diet which I am told is a pain in the arse.

If that wasn’t bad enough I am getting conflicting information from this doctor about the ciliac disease. He said my biopsy was not positive but the blood test was and this means Gluten free. But he handed me a packet about ciliac disease and it outlines a variation called latent ciliac disease. In latent ciliac disease the blood test is positive but biopsy is negative. The treatment for this –  do NOT do a gluten free diet. Weird.

The good news is that our insurance changed and this doctor does not take the new insurance. That means I will go see a new doctor and see what he has to say. In the mean time I will be eating as much gluten as possible since I may never be able to eat it again.

Anyone know where I can get a couple gallons of gluten?

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