Not Sure I Should Proceed With Upper Endoscopy

[xyz789]

A few months ago I talked to a friend who has celiacs disease and she talked about how she didn't have any "normal" symptoms and it was all kind of a fluke that the doctor's found out that she had it. I talked to her about me having a hypothyroid and that my son has always had GI issues. She said that next time I go for my normal blood work just ask to have the blood test run. Then, if I was positive, have my son checked.

So - I go to my family doctor for my normal tyroid blood work and asked about the anti-gluten blood test. I sensed my doctor thought I was crazy when I told him that I don't have any of the "normal" symptoms, but he wrote down that I had one so that he could run the test.

The test results came back mixed, but there were some things that tested positive for it. I haven't seen the #s and I'm not sure showed positive. His office sent me to a GI.

Yesterday I went to the GI and told her exactly what I've said above. It was kinda on a whim that I got the blood test done, that I don't have any "normal" symptoms, but am always gassy...that's really the only thing. I also told her that I DO feel better when I'm eating a non-gluten diet (when I'm do a cleanse...) than I do when I'm eating gluten.

Anyway, she said that she wanted to do an upper endoscopy.

Does this seem strange to anyone else but me and my husband? I feel like it would be similar to me walking into a doctor and saying a friend convinced me I have a broken toe, don't have any signs of a broken toe, but him wanting to run x-rays. The only difference is that I need to be knocked out for the endoscopy.

The only things I can think that are going on with my body or in my family that could have SOME relation are:

I have hypo-tyroid

I have gas all the time

I have high blood pressure

I have occasional vertigo (could be seasonal allergies?)

I have dry eyes and sometimes severe dryness/redness around them (seasonal?)

My mother has muscular dystrophy

My mother has Parkinsons

Thoughts?!?

[xyz789]

When I went to my family doctor for my normal checkup and blood work (to test thyroid levels -- I have hypotyroid), I asked to have blood tested for gluten intolerence. He asked me if I had any of the normal symptoms and I said no, not really. He asked why I wanted to be tested and I told him that I had a friend who was Gluten Intolerent (can't remember if she has Celiacs as well) and that she never had the regular symptoms. She had hypotyroid (which I have) and just felt yecky. My friend and I went on to talk about gluten-free diets and I told her that whenever I did cleansings and followed a gluten-free diet that I always felt so much better. We also talked about my son who has always had digestive problems and I wondered out loud if gluten had anything to do with it. So, my friend said next time you go to the doctor, just ask for the blood test and if you're positive, then maybe that could explain your son's issues.

So - I told my family doctor all of this and he wrote down that I suffered from diarrhea (which I don't), so that he could run the test.

The test results came back mixed and showed some things to be positive, but the administrator said sometimes they're a false positive and they sent me to a GI.

I went to the GI yesterday and they want to do an upper endoscopy. I was a little surprised! I went from "possibly false positive" tests results to a doctor wanting to do an invasive procedure where I'm put to sleep? I'm having serious doubts about this.

The only things I have that might have ANY relation are: hyprothyroid, gas (all the time...), vertigo (seasonal allergies?), the skin around my eyes if often very red and very dry/cracking, my mother has both muscular dystrophy and Parkinsons.

Thoughts?

[psawyer]

There were two topics which were essentially the same, but they were not identical. I have merged them.

It is not uncommon for a celiac to exhibit no symptoms, while still having detectable damage to the villi. I have had the endoscopy twice, and it is not a big deal.

[xyz789]

There were two topics which were essentially the same, but they were not identical. I have merged them.

It is not uncommon for a celiac to exhibit no symptoms, while still having detectable damage to the villi. I have had the endoscopy twice, and it is not a big deal.

Peter - thank you for merging them. I didn't see the first one post (didn't realize it was not immediate) and thought I didn't do it correctly, so I typed it out a 2nd time.

[plantime]

I did not have typical symptoms of celiac, but an endoscopy showed damage to villi. The blood test must have showed something to your doctor for him to send you to the gastro doctor. Good luck with whatever you decide to do.

[ravenwoodglass]

The blood tests when positive are pretty conclusive. False negatives are common but false positives are almost unheard of. Your 'vertigo' could be gluten ataxia, if that is the case you really need to be gluten free to keep the nerve damage from progressing. It is not normal to have gas and celiac antibodies can attack pretty much any organ they choose to including the thyroid. Do give the diet a good strict try after your biopsy is done, you don't need to wait for the results. You may be surprised how much impact gluten is having on you.

[xyz789]

Thank you for the responses you've sent so far. I called my family doctor to get the gluten test scores. Here is what I found out from them.

My Igg=27 (anything over 17 considered positive)

My IgA=<3 (anything less than 11 considered negative)

Doing some internet research it looks like if your IgA is positive (mine is negative), then 80% of these patients have Celiacs. If it's negative like mine, 71% are truly negative for Celiacs.

For the Igg it says that there are more false positives with this one than the IgA. It says a false is a false, but that it's very possible that a positive Igg is a negative for Celiacs.

Does anyone have more information for this?

[Peace41]

Thank you for the responses you've sent so far. I called my family doctor to get the gluten test scores. Here is what I found out from them.

My Igg=27 (anything over 17 considered positive)

My IgA=<3 (anything less than 11 considered negative)

Doing some internet research it looks like if your IgA is positive (mine is negative), then 80% of these patients have Celiacs. If it's negative like mine, 71% are truly negative for Celiacs.

For the Igg it says that there are more false positives with this one than the IgA. It says a false is a false, but that it's very possible that a positive Igg is a negative for Celiacs.

Does anyone have more information for this?

From what u have written here, this test result says u don't have it. But also have read that people ended up finding out they were even though they had a negative test.

Gastro people do endos, but at least they can see what is going on inside of u. I got my diagnosis, still not sure if it is the Celiac Gluten Intolerance yet, or the Non heritary kind. I am now seeing it is the hereditory kind (can be related to autism spectrum disorders) , from what I have learnt about my son's disabilities. For me I was going into have not just an endo, but also a dilatation to have my throat stretched but to also see if I had sustained any damage, had an adverse reaction to herbal supplements and medication knocked my whole digestive system out. And yes there was damage, and the biopsy results was conclusive, and found out that I had other things going on in my stomach as well as my bowels, and got to also see what is going on with my throat and have the mucus sucked out. Going under again this friday for another dilatation. I hope that I don't need another one after this, going for two in two weeks, its a bit much but necessary.

The last time I had an endo, they just found a slight inflammation and that I do have Gords. But at least I knew and isn't that what u r looking for confirmation and

to know?

Peace 4 1