Going To Cancel My Endoscopy

[Sheely]

I went and saw a GI doc this past Tuesday, who scheduled an endoscopy due to a positive IGA blood test (it was 27). He also wanted to do a colonscopy at the same time, due to the fact that I have endometriosis. I had a hysterectomy a year ago, but he thinks it may have infilttrated my bowel.

I have been stressing so badly about these tests. I don't handle anesthesia well, I always, always, spend hours throwing up after anesthesia, no matter how short the surgery is.

I had a long talk with my husband tonight, and we both agreed that I don't need any more validation that I do have Celiac Disease. I know when I eat anything containing glutens, I feel horrible. I get bloated, I get diarrhea, and I feel so daggone tired. Before my GI appointment, I ate as much gluten as I could, because I thought he might want to do further blood tests (he didn't.) I felt so terrible that I had to stop. I broke out with itchy blisters on my legs, my joints were aching, and I could barely function at work, because I couldn't think straight. I know that the endoscopy isn't a big deal, but deep in my heart, I know I have celiac disease, so why go through the trouble?

My daughter went out and bought me a huge bag full of gluten free products from Trader Joe's for Mother's Day. Since I've gone gluten free, I haven't felt bloated or had diarrhea at all.

Does this make sense to anyone? Am I crazy?

I guess I initially needed the validation, because as I mentioned in previous posts, I have a neurological disorder that went undiagnosed for almost 10 years, and many doctors tried to pass me off as being depressed or crazy. But after I finally found out what the problem was, the relief that I felt that I wasn't crazy was tremendous. I felt like... HAH!!! I'm not crazy!!!

But as they say, "Reps Ipsa Loquitor" (the thing speaks for itself". I think the symptoms are speaking loud and clear.

Sheila

[judy05]

Sheely,

This is your decision to make, I just wanted to run my story by you. I also didn't want to be scoped because I was afraid of the anesthesia. After my thyroidectomy I developed a bronchial spasm in the recovery room I went into a bronchial spasm, that's how I woke up. I thought I was going to die, however the medical team was excellent, I recovered but spent a week in ICU and developed two infections. To make a long story short, I'm glad that I had the Endoscopy, it wasn't too bad, I wasn't totally asleep, I could hear what they were saying, I also had a very good nurse who gave me a lot of support. They were all aware of my past experience. I learned that I had Barrett's Ring around the Esophagus, which has to be carefully watched every year. I also learned that my villi were not damaged and the biopsy was neg. I am thankful that I don't have Celiac but i do have to stay on a Gluten-free Casein-free diet because of my food intolerances. I would never have known about that condition because I thought I just had heartburn. I'm sure if you explain your past experience to the hospital staff they could give you something to ward off

the vomiting which you experienced in the past. I had the Colonoscopy later and it was harder than the Endo for me. Everytime they advanced the tube I screamed out, my husband was down the hall and he could hear me. The doctor said most people don't react that way, but I couldn't stand the air which they had pumped into me. I could watch the whole thing on the monitor, I was totally cleaned out except for a few particles which Doc said were last night's supper .Luckily I only had one small benign polyp. Thank God I don't have to do that again,for a while!

I think you should have it done, just explain to the staff, they will watch you carefully. It is better to know what's really bothering you. By the way my IGA was 75 and I have been gluten-free for almost two years. Good luck to you.

P.S. I don't think you are crazy, some of us have gone through hell to finally find out what our problems were. I didn't find out until I was 62 and I'm still not completely well but I want to be healthy in the years to come. I've tired of being sick.

[Merika]

Hi,

Well, my blood tests were clearly positive for celiac, so I saw no need to do the endoscopy, and for further confirmation, I felt *much* better on a gluten-free diet.

In case you haven't come across this yet, your endometriosis and hysterectomy are most likely tied to/caused by your celiac. I don't have personal experience with this, but i would think that symptoms would subside after being on a gluten-free diet.

hth,

Merika

[KaitiUSA]

I got an official diagnosis through blood tests only. My doctor felt from the test results and the gene test positive for DQ2(one of the main celiac genes) that I did have it. He didn't even want to do a biopsy.

If you feel comfortable in your mind then by all means skip it. Your IgA was positive so they are elevated for a reason. Plus your body seems totally against gluten and always listen to your body, it knows more then any doctor or test can tell you.

what they can do is give you a followup blood test in like 6 months to see if the levels have gone down(this is used to see if people are complying with the diet)

[CarolynM]

If you still feel you need validation, how about Enterolab stool test or gene test? The endoscopy/biopsy told us nothing with our daughter last July- whether done poorly or too early to diagnose. After worsening symptoms which I tied to gluten by keeping a food journal, I ended up doing gluten-free last Aug and she showed improvement within days. As you said that spoke for itself. We have found great products and gluten-free options and support from this board and a local CSA group. Good luck to you.

[frenchiemama]

I was diagnosed through blood tests only. I don't know what the numbers are, but my doctor said the results were "a very strong positive". She gave me the option of an endo, but quite frankly I couldn't see the point. The only treatment is a gluten-free diet, whether I know what my intestines look like or not. Also, I feel SO much better on gluten-free diet. I no longer go through the day feeling like my brain was removed and replaced with cotton balls, nor do I have to run to the bathroom 15 minutes after eating. Good enough for me.

[jknnej]

I am only diagnosed by blood test and felt I didn't need the scope. I am much better off gluten-free, even if there was a chance I didn't have celiac disease.

But I still want the scope without the gluten challenge just to make sure my insides are OK. I have other problems which could be acid reflux or another type of stomach issue.

What kind of neurological issue do you have? I'm just wondering because I think I need to see one soon, too.

[egardner]

I agree. I had a scheduled endoscopy and I cancelled it the day before when I found out what it was going to cost me, even after insurance. Since we werent trying to determine the line of treatment because it is the same regardless of the results, I talked to my doc and went straight to the diet. What a relief! I am only a week and a half in and I'm like a different person. Remember, you are your only advocate, doctors can only do what they have been taught. It is your job to do just what you are doing now; think critically, weigh benefits vs. risks, and be determined to be proactive about your health. The blood tests are specific to celiac disease, and as my mom's friend the nurse says, celiac disease is like pregnancy, you either are or you arent.( I know, you can have negative tests and still have gluten issues, Im just giving you an association factor, if you got a positive prenancy test you would stop smoking that day, so why not the same for celiac disease) The blood tests say you are, so go with it. If things don't improve, then you know you need further testing. Good luck to you, we are all here to help!

[skbird]

Yep - I've not heard anyone mention the cost of one but it's enough to put me off. If it was covered, I'd probably do it. But no way - my insurance (ha-ha, I typed "unsurance"!!!) is bad enough. I don't need any more convincing at this point.

I hope I'm on better insurance when I'm 40 (I'm going to be 34 next month so I have a ways to go) as about then I'd like to do a colonoscopy (my grandma died of colon cancer) but maybe by then they'll be using that camera pill or something similar and that will be acceptable for testing.

EnteroLab is great if you want a second opinion. Also a six month check up blood test is a good idea.

Take care!

Stephanie

[Sheely]

I am only diagnosed by blood test and felt I didn't need the scope. I am much better off gluten-free, even if there was a chance I didn't have celiac disease.

But I still want the scope without the gluten challenge just to make sure my insides are OK. I have other problems which could be acid reflux or another type of stomach issue.

What kind of neurological issue do you have? I'm just wondering because I think I need to see one soon, too.

I have Chiari Malformation. I was sick for a very long time, and had about 7 MRIs before it was finally diagnosed. The docs kept thinking at first that I had MS, but each time the MRI would come up negative for MS. That's when they would start looking at me with a raised eyebrow, then start asking me if I was having marital or financial problems. One doc even started me on Paxil, and took it because I started thinking maybe I was nuts.

If you would like to check out my website, here is the link: Open Original Shared Link

Thanks!

Sheila

[Guest BERNESES]

I have to admit, for me, the biopsy wasn't worth it. I was gluten-free for 2 months before doing the gluten challenge which was hell and the test itself made me sick as a dog. I reacted very poorly (to say the least) to the sedatives they gave me and i personally wouldn't do it again if you paid me. I'm still recovering from it and it was April 15th.

It's clearly your personal decision to make, but I agree with Kaiti completely - your body knows best. My body knew exactly what was going on- I just should have listened to it. Do what you feel most comfortable with.

Oh and to top it all off, my biopsy came back negative. Beverly

[Sheely]

I have Chiari Malformation. I was sick for a very long time, and had about 7 MRIs before it was finally diagnosed. The docs kept thinking at first that I had MS, but each time the MRI would come up negative for MS. That's when they would start looking at me with a raised eyebrow, then start asking me if I was having marital or financial problems. One doc even started me on Paxil, and took it because I started thinking maybe I was nuts.

If you would like to check out my website, here is the link: Open Original Shared Link

Thanks!

Sheila

Oops, sorry, there's something wrong with the webpage and it won't load!

Sheila

[Sheely]

I have to admit, for me, the biopsy wasn't worth it. I was gluten-free for 2 months before doing the gluten challenge which was hell and the test itself made me sick as a dog. I reacted very poorly (to say the least) to the sedatives they gave me and i personally wouldn't do it again if you paid me. I'm still recovering from it and it was April 15th.

It's clearly your personal decision to make, but I agree with Kaiti completely - your body knows best. My body knew exactly what was going on- I just should have listened to it. Do what you feel most comfortable with.

Oh and to top it all off, my biopsy came back negative. Beverly

Beverly,

Did your blood work come back positive? I'm sorry you had such a hard time with the sedatives, but I know what you mean. I'm the same way. I always get so sick and I have a hard time getting it out of my system.

Best wishes,

Sheila

[ianm]

I have never had any tests and went gluten-free before I even knew any existed. For me cutting out the gluten resulted in such a drastic turnaround in my health that it was so obvious what the problem was. It would be nice to know for certain if I really do have celiac or am just gluten intolerant. At this point in time I just cannot afford to go back on gluten and derail the progress that I have made with my health and life in general. Even if I had official proof the gluten-free lifestyle is the only cure anyway. It is a decision that only each individual can make. Testing is important to some and not so important to others. As long as the gluten-free diet works than that is good enough for me.

[julie5914]

How much does endoscopy cost?