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Help Me Decide Please-pillcam Or No Pillcam?

Sarah8793

By Sarah8793
in Coping with Celiac Disease

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Sarah8793 Enthusiast
Sarah8793
Posted

After reading Momma Goose's post about the pill cam I got really excited about the idea of having this procedure done. History: Had 2 negative biopsies, but a positive through enterolab and I have the 2 main celiac genes. I am 95% sure that I have celiac disease. Right before taking gluten out of my diet I was really sick. I became hypoglycemic and this resolved once I went gluten free. I have been off gluten for almost 2 years now, but during the last few months I started having blood sugar problems at night, shortness of breath, muscle weakness (some of my major symptoms I used to have right before I went gluten free), In addition, my 9 year old son who also tested postive at enterolab has had a return of his gluten symptoms. We were eating Ener-G tapioca bread for the last 6 months. I took that out of our diet and my son has totally improved and my hypoglycemia is getting better quickly. I know that it is supposed to be gluten free, but I really feel that we were reacting to it. I also cannot eat their pretzels and neither can my daughter without getting an immediate stomachache. Anyway, that is another story.

So I am thinking that with recent glutening, it is possible that the pill cam would find something, or it might find old damage. If it comes back clean and negative then I will have confirmation that my intestines are healthy. In this respect I feel that it is a win-win situation. I also like the idea of the opportunity to get an "official diagnosis," out of it. Right now, when I see doctors for health issues (i.e. swollen salivary gland) I have to say "I think" I have celiac disease and then they ask me if I have tested positive to which I have to say "no, but...." and then they change the subject because they aren't interested in self-diagnosis. I also believe that knowing that I have celiac disease might be factored in when assessing me for health problems. Right now, it isn't. Okay, now on the flip side, what are the cons for having the official diagnosis? The only one I can think of is insurance issues? I know in the past that has been discussed here in the fourm. I am on my husband's insurance plan right now and currently am not working. I plan to go back to work in a few years and will possibly enroll in an insurance plan. But that is a few years away and it doesn't seem worth it to do the test then.

Any thoughts? I feel an urge to get an official diagnosis documented so that later in life as health issues arise and doctor's knowledge of celiac disease increases they can connect the pieces of the puzzle. Or am I putting to much faith in the diagnosis? I know that there are tests that should be run on people with Celiac disease to monitor their health, but I fear that without the diagnosis, if I request them, I look like a hypochondriac and could be denied. Thank you if you have read all of this! :rolleyes:

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Nancym Enthusiast
Nancym
Posted

Would many doctors out there now even recognize celiac disease dmg from a pill-cam? It may be so new that they haven't really been trained to know what to look for.

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
Would many doctors out there now even recognize celiac disease dmg from a pill-cam? It may be so new that they haven't really been trained to know what to look for.

This is a good question. I have no idea. I guess I will need to find this out first.

RiceGuy Collaborator
RiceGuy
Posted

Many times things like muscle weakness can be caused by a nutrient deficiency. For me it was B12 and magnesium. Have you ruled that out? Also, since dairy, eggs, soy, and other foods can become a problem after gluten-free, if you haven't already tried avoiding them for awhile, it might be a good idea.

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
Many times things like muscle weakness can be caused by a nutrient deficiency. For me it was B12 and magnesium. Have you ruled that out? Also, since dairy, eggs, soy, and other foods can become a problem after gluten-free, if you haven't already tried avoiding them for awhile, it might be a good idea.

Yes, unfortunately I have been dairy free for 2 years and soy free for 1 year now. I think the weakness is from my hypoglycemia which is related to gluten ingestion.

RiceGuy Collaborator
RiceGuy
Posted
Yes, unfortunately I have been dairy free for 2 years and soy free for 1 year now. I think the weakness is from my hypoglycemia which is related to gluten ingestion.

OK, and I just now noticed it in your signature (I need to remember to check such things before posting LOL).

Still, I'd say it's probably a good idea to try a supplement or two. I began to feel the difference the first 24 hours. But I can see how it may be blood sugar related if it only happens at night. For me it did seem to get worse for certain times of the day, which I attributed to the amount of activity and the time since the last meal.

About your question regarding if old damage might be detected, as I understand it the intestinal lining is supposed to be able to replace itself in a somewhat short period of time (few days?). But I wonder if that truly happens for many of us because it seems to me the recovery would be quicker for things like post-gluten-free dairy intolerances and leaky gut.

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author

Thanks for the supplement suggestion. I am not currently taking any because I have had trouble in the past (which I now think was soy related). So I do need to find good, dairy, gluten and soy free supplements.

I guess my real question now is, if I get an official diagnosis, what are the chances of being denied health insurance in the future?

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      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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      Bob red mill gluten free oats

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