Continuous Distention

[calvert1]

I have been 100% Gluten Free since Nov 2005. Since then, I have gained almost 40 lbs and look 7 month preg(which is odd since I am male) I lost my job awhile back and did not have insurance for 60+ days. I now have it back again, but of course, now the Celiac disease is considered a pre-exsisting condition. If any of you have had this experience or are a doctor..please post or email me at calvert1@gmail.com

I have recently eliminated dairy from my diet as well. I am thinking that if I just stop eating that would be best..very frustrated...life was better before the gluten-free diet than now. thanks for any info you may have.

[happygirl]

Do you have private insurance or insurance through a job?

[calvert1]

Do you have private insurance or insurance through a job?

Insurance through my job. Because I could not provide proof of continuous coverage I get the pre-exsisting clause..so says the company.

[mtdawber]

I know things are really different in the US health care system and I don't know how it works in the US but here in Canada the only benefit that a pre-existing condition comes into play for an employer sponsered group insurance plan is Long Term Disability (LTD). I would call the insurance company directly and get the answer from them. Would they exclude diabetic supplies and medication to a Diabetic?

It's just my opinion (I am a benefits consultant here in Canada) but I think it's worth finding out fore sure ....

[calvert1]

I know things are really different in the US health care system and I don't know how it works in the US but here in Canada the only benefit that a pre-existing condition comes into play for an employer sponsered group insurance plan is Long Term Disability (LTD). I would call the insurance company directly and get the answer from them. Would they exclude diabetic supplies and medication to a Diabetic?

It's just my opinion (I am a benefits consultant here in Canada) but I think it's worth finding out fore sure ....

I appreciate that...maybe I need to move to Canada..lol I am more concerned about my belly distention and I am hoping someone out there has some insight or similar experiences to share. I will have to pay out of pocket if this is something more than weight gain..which I believe it is with all the other symptoms..frequent fevers, total fatigue, middle back pain..can't sit in one place for more than 10-15 mins without extreme pain, foot pain (arch) and I am only 36..none of this was the case prior to becoming gluten free?!?

[mtdawber]

Sorry, I wasn't meaning to take away from the post. I am sorry you're feeling crappy...

Canada is lovely and after 3 months... free health care... long waits but it's free....

My belly is bloated out and covered with DH but I haven't been gluten free long enough to know if it will go away or not... plus being a girl I just look a little more plump than I wish I was...LOL

Do you think you are intoloerant to something else?

[calvert1]

Sorry, I wasn't meaning to take away from the post. I am sorry you're feeling crappy...

Canada is lovely and after 3 months... free health care... long waits but it's free....

My belly is bloated out and covered with DH but I haven't been gluten free long enough to know if it will go away or not... plus being a girl I just look a little more plump than I wish I was...LOL

Do you think you are intoloerant to something else?

You didn't take away from it at all. Any dialogue is great! I removed dairy from my diet about a week ago..hoping maybe that helps. It's just hard to explain to my family..I am the breadwinner and today for example..i just couldnt even sit at my desk..I have a drs appt tomorrow at 3 cst but he is my family practice doctor so I know all he is going to say is what did your gastro dr say..which I can't go to because of the insurance. So I hope to convince my dr to draw from his medical school memory to help me out until I can go back to the gastro doc.

[mtdawber]

Your family doc is covered but specialists are not... wow, glad I live in Canada. I have had three dermatologist appointments in December, another one in January and the gatro - I have to WAIT until APRIL....like I said free but you wait... ahhhh...

I understand - some days in my office I close the door so I can fidgit and feel crappy in peace. It's hard to want to even be at work on those days but the mortgage has to be paid and the food still has to go on the table. I go back to work tomorrow after one and half weeks off work.... I'm not looking forward to it...

I know what you mean about any dialogue. It's nice to have a conversation with someone who really knows what's going on.

On another thought - what happens if you go to the hospital - do you have to pay for that separately too? Sorry for my ignorance, I'm not up on the US as much as my Canadian benefits.

[happygirl]

Calvert-makes sense. Yes, in that instance, it would be a pre-existing condition. Some companies follow through on it-thats why I was asking. I had the same problem (not with Celiac) and learned it was worth my while to buy cheapy insurance in the interim, so then I had "insurance" for that infamous 63 day period.

If you did have it at some point, they will usually work with you to essentially pro-rate your time. For instance, if they say its 18 months, but you did have insurance, say 3 months before you got your new insurance (uninsured for 90 days or so), they may cut it down to a shorter time period, compared to not having insurance in the past, say, 2 years. One of mine is like that-it might be worth reading your EOB or calling to talk to them about it.

Couple questions that might lead us to help better.

Do you officially have Celiac (which tests) or did you go gluten free on your own? Do you consider yourself a celiac or a non-Celiac gluten intolerant person?

If you are a Celiac, have you had follow up bloodwork to determine if your levels have returned to normal (i.e., to determine if/if not these problems are Celiac related?)

Are you eating out at all?

What type of symptoms did you have pre-gluten free? Is this bloating normal to being glutened?

Hopefully we can make some progress here.

Do you know of a good doctor in your area that deals with Celiac and other food intolerances? If you end up going and paying out of pocket (and you should contribute to your Flex Spending Account, because then its at least pre-tax going), you will want to make sure that you see someone that is researched and recommended.

Laura

[calvert1]

Calvert-makes sense. Yes, in that instance, it would be a pre-existing condition. Some companies follow through on it-thats why I was asking. I had the same problem (not with Celiac) and learned it was worth my while to buy cheapy insurance in the interim, so then I had "insurance" for that infamous 63 day period.

If you did have it at some point, they will usually work with you to essentially pro-rate your time. For instance, if they say its 18 months, but you did have insurance, say 3 months before you got your new insurance (uninsured for 90 days or so), they may cut it down to a shorter time period, compared to not having insurance in the past, say, 2 years. One of mine is like that-it might be worth reading your EOB or calling to talk to them about it.

Couple questions that might lead us to help better.

Do you officially have Celiac (which tests) or did you go gluten free on your own? Do you consider yourself a celiac or a non-Celiac gluten intolerant person?

If you are a Celiac, have you had follow up bloodwork to determine if your levels have returned to normal (i.e., to determine if/if not these problems are Celiac related?)

Are you eating out at all?

What type of symptoms did you have pre-gluten free? Is this bloating normal to being glutened?

Hopefully we can make some progress here.

Do you know of a good doctor in your area that deals with Celiac and other food intolerances? If you end up going and paying out of pocket (and you should contribute to your Flex Spending Account, because then its at least pre-tax going), you will want to make sure that you see someone that is researched and recommended.

Laura

Laura-

First of all--thank you for your time. It's nice to have a place to share/vent I am a confirmed Celiac both bloodwork and the little camera down the pipe. I have not had a follow up blood test done as I lost my insurance and to be honest for a while all was going well...meaning..my bathroom time was much more pleasant(if thats possible) and frankly for the most part it still is even after all the other probs. I now have insurance and figured I can go see the family doc under the premise that Im just not feeling well..and since I've been with him for about 5 yrs or so..figured I could pick his brain while hes in the exam room. But more than likely, he is going to tell me to go back to the gastro doc..which I can't do for 11 months...i do remember right before i lost my insurance the gastro dr wanting me to take a test that lasted about 8 hrs that involved my breathe?? anyone ever hear of that one? I can't remember the name of it...let me know if anyone does...I'll post as soon as I know something tomorrow..but will respond tonight as well. thanks everyone! Matt

[tarnalberry]

You should be able to see a gastro if your doc believes the referral is unrelated to celiac. It's possible to have celiac, and have other gastro problems that are not related to the condition. PLEASE do talk to him about it. It may be relatively easy to deal with, but it may be serious as well. (Had you been female, I would have remarked that I recall that as being a symptom of ovarian cancer. )

[happygirl]

Matt,

No problem! Thats why this board is such a great resource.

Thanks for giving me a little bit of background.

You should be able to have a doctor's visit-there is a good chance that this is non-Celiac related, so it will be billed differently. I started having problems about 1.5 years gluten-free, and had a bunch of tests run, but they weren't billed as Celiac related.

You can see a GI-just for different reasons (i.e., you are doing well on a gluten free diet, but are now having other problems....so lets explore those!) Your GI might still want to run the Celiac panel to make sure that isn't part of the problem, but your insurance should cover the doctor's visit and *other* tests. I would be clear to your doctor about your insurance situation-usually they are more than willing to help you out with this-but they have to know in order to help.

I'm not sure about the 8 hour part...I'm thinking he wants a hydrogen breath test though, to check for small bacterial overgrowth, which is usually in the small intestine. The one I did this fall was not 8 hours though...maybe only like 2 hours or less?

Hope this helps,

Laura

[calvert1]

You should be able to see a gastro if your doc believes the referral is unrelated to celiac. It's possible to have celiac, and have other gastro problems that are not related to the condition. PLEASE do talk to him about it. It may be relatively easy to deal with, but it may be serious as well. (Had you been female, I would have remarked that I recall that as being a symptom of ovarian cancer. )

I have done some research tonight..something that always makes me feel better and have found this study which I believe fits me as far as the non responsiveness to the gluten-free diet:

Open Original Shared Link

In this report it states that one can have small intestine bacteria and or lactose intolerance secondary to celiac. I actually susupected the later so I have stopped dairy from my diet (only a week now so no good or bad signs from it) I plan to let the dr know this tomorrow. I think you are right in that I can have the dr send me back to the gastro with the belief that I did not respond to the gluten-free diet Its been over a year..and that other test need to be run. Anyhow, I will post further as soon as I know.. Nice to meet you as well! Matt

[happygirl]

Matt,

Check out the book that I have listed in my signature. You can get it from any large book store chain, online or they can order it. It is written by one of the most respected Celiac physicians AND researchers (important to me!) from Columbia University. First, it is just a great book. Second, it has a whole section about what to do when you aren't getting better. It covers things like lactose intolerance, small bacterial overgrowth, and many other things.

It might help guide you along this. Even though I had insurance, it was still worth it to me to make educated decisions and know what my docs were talking about. My follow up blood tests were normal, so it wasn't the problem-it was a non-Celiac related issue, which gives hope for your case in terms of insurance.

Also-you may be lactose intolerant, but you could also be other food intolerant (like casein). If its casein, its in more than lactose is, plus, there is not a pill for it. (just a thought-wanted to throw that out there).

I think that it would be worth it-even a little bit of out of pocket expense-to have the Celiac bloodowork run, to know that it isn't the problem, so that you can move on and address other issues!

Laura