Suspecting CD - Is a diagnosis worth it???

[The Edifying Conscience]

Al,
I'm not saying that a CD diagnosis will NEVER cause a person to pay increased rates or be ineligible for said insurance. I'm simply saying that my experience has been otherwise.

Most importantly though, I'm saying that one should aim for a CD diagnosis despite potential issues with insurance coverage in the future.

Again, I've not had any problems with medical insurance and CD.
TEC

[Noatak]

Jenni....I should have been more specific with my information and I'm sorry if there was a misunderstanding but I initially went to my PCP and got NOWHERE with them. They were not too concerned that I was losing weight daily and was dehydrated to boot. They just brushed me off to a gastro doc and the wait for an appointment was too long. Plus, I knew a gastro doc would insist on a biopsy and I never would do an invasive test unless it was a last resort. As it turned out, between the bloodwork and my symptoms, then the overwhelming response to going GF after only 3 days, made it unnecessary to do a biopsy.

I turned to a doctor I have been seeing for years for alternative medicine. She is an internist MD who practices both eastern and western medicine. She called the lab that specializes in Celiac testing after I told her what I suspected and found out what specific tests to run. In all honesty, she was somewhat excited as I was her first official diagnosed patient with CD. But she is well versed in all things internal and consulted with the lab to get additional information so no mistakes would be made. I paid for all this out of pocket as it took much less time and I was treated with respect by her...not like my PCP who would not even talk to me about what she suspected. I figured it out myself and then went to my other doc to request bloodwork.

Some folks get very lucky and find a PCP who works well with them to get a diagnosis but it wasn't happening for me. The doctor I found that I really like is not covered under my insurance plan but she is well worth the price. I don't get re-tested as often as I should but who cares? I feel so much better than before, have gained 10 pounds this past year so I know my intestinal tract is healing. Best of all....ALL the stomach problems I've experienced in my life are all gone....every single one of them. Have no idea what it's like to have acid reflux or upset stomach and that's a real blessing!

Be persistent with your doctor and if that fails, see someone else. You live in your body and know it better than these knuckleheads. If all else fails, you can always pay for some of the testing yourself to get the peace of mind you seek. The testing cost me about $400.00 for all the bloodwork so it's not totally undo-able. Let us know how it turns out....we've all been there and know how you feel.

[Noatak]

Regarding the insurance issue, I think the time it could become a problem is when a person has to change insurance coverage or is attempting to buy life insurance, post diagnosis. If you have had a policy for a long time and then are diagnosed with CD, I don't think they can just dump you off the plan. They could refuse to cover testing which is common for insurance carriers.

However, buying a new policy on your own, without group coverage or buying life insurance could pose a problem as with life insurance, they get pretty picky nowadays about who they will cover or how much they charge.
What with HIV and all the other bad diseases today, they still want to make their profit. My insurance carrier does not know I have CD and as far as I'm concerned, they aren't going to know...if I can help it. As I paid for my testing out of pocket, they weren't involved. My life insurance was bought in my 20's when I was youthful and healthy (so to speak) and I will not change policies as they could refuse me now that I have 2 autoimmune diseases.

[Kathie]

We just changed policies last year (from BCBS paid by our company to BCBS individual) I listed the CD on the form, it did not effect my policy and it was not black balled (my step-children were in counseling and that was black balled). I have not however had regular testing done and that may make a difference. I was diagnosed in 1988, since then I have been covered under at least 5 different insurance plans and it has never been an issue. Of course that may change once the reality sets in on the actual number of people who have CD. It did not affect my ability to purchase supplemental policies like AFLAC either, over the years we have had policies similar to their's from 3 different companies. We also at one time had both term life insurance and regular life insurance.

In my humble opinion as long as the treatment for CD is with diet I don't think it will have a significant impact on insurance. Not at least until the medical community admits in force that many other diseases which do effect your insurance can be a result of untreated CD.

[emilyallsz]

I have been off gluten for several weeks now with probably about three single items here and there (i was traveling and gave them a try) but gave blood yesterday for the antibody test. i had read a magazine article that being off the gluten would affect the test but when i asked the doctor he said it wouldn't affect the test, that the test shows a sort of genetic disposition to it. now i have read several celiac sites that say that you should not take the test without being on gluten. like the others, i have had success by being off of it but it would be nice to get a firm diagnosis...
has anyone had their test show negatively because they had already stopped gluten then started it and it showed positive> thanks so much.
i was just over in UK & Ireland and almost all restaurants (not just healthy food natural food places but just standard places) list wheat free gluten free or safe for coeliacs on their menus. it was a whole new world!

[Noatak]

The test that could be affected by not ingesting gluten would be the antibody tests. The only thing I am unsure of and it could differ with everyone is the amount of gluten needed to show a true positive. I went GF for a couple of weeks before my test because I couldn't stand it anymore but did eat a little gluten every day, in the morning only. My test came back high.

The test that shows predisposition to Celiac is the gene testing and you do not have to be ingesting gluten for that to show. I have the kit from Enterolabs at home and will send that off in a couple of days. I know I have Celiac but am curious to see my markers plus I am going to shove it in my families face as they are all eyeball deep in denial about it. Maybe that will convince them to get tested....especially the ones with symptoms now!

Isn't the UK grand? It's my home away from home and I had no problems getting good food to eat there that was safe and I ate out 2 meals a day. Celiac is sometimes called "The Irish Disease" so they understand the whole thing and don't look confused when you bring it up!
Where did you go? I hope you don't think I'm being nosey but I love hearing about other people's trips!

[emilyallsz]

thanks so much! now of course, i realise, i don't know what tests the doc ordered...
it's hard to consider eating anything gluten in it right now so i am hoping its the genetic one or all of the tests that he ordered. i am of course irish (half- irish descent anyway) and now (after doing celiac site reading) slightly irritated at the way the doc reacted to my suggestion that it might be wheat. i did not react to the wheat skin prick but after being overseas and seeing how prevalent and accepted it is i couldn't believe how the doc was so skeptical, "there's a small chance you could have it...theres is a blood test you could do..." seems pretty likely to me.

of course, like other people on this site, i have had other issues like chronic yeast and toe fungus/ringworm and i am looking for some sort of imbalance that may be causing me to get those (for like ten years!!) . in the meantime, i was on diflucan for 3+years which i think ruined my liver/digestive etc. so my gut may just be all a mess-generally "reactive" from that, and/or i am also having some issues with gluten. it sure is confusing to figure all out, from allergy to intolerance to celiac.

anyway! we started our trip in london and exeter and then spent about four days each in galway and dublin before heading back to london. i loved it (&love how they spell coeliac!)
p.s. i'm in mass. too

[Noatak]

I should have guessed you lived in Mass. from your Irish ancestry to the love of the UK! I am 3/4 English and 1/4 Irish so there is my predisposition to Celiac's!

Your experience with the doctor's reaction is so common and most of us on this forum have experienced this attitude. Just do not doubt yourself and if you feel something needs investigating, don't let them convince you you're headed down a dead end street. Only you know what's normal for you.

I also suffered from systemic candida problems in my GI tract and twice went on the diet and used Nystatin to combat the problem. It worked incredibly well but I also keep in mind since the CD diagnosis that the candida diet cuts out many of the foods that aggravate CD. My symptoms completely subsided. So if you have systemic candida issues, do not discard the idea that you may have CD. I think I was going around in circles with the two of them....one aggravating the other....until I discovered that the underlying problem was CD. Most doctor's in mainstream medicine do not believe you can have a candida problem in your GI tract so that can add to the problem. What doctor kept you on Diflucan for 3 years? That is grounds for malpractice, in my opinion. It really can do a number on your liver, as you stated. You cannot rule out CD definitively until the gene testing is done.

I have not been to Ireland yet but will do so in the future. I try to get to the UK every other year and went last May. I just love London...what a fun city it is. Plus, with so many Celiac's there, they get it and finding good food is easier than other places. No language barrier either!

Keep in touch and let us know the outcome of your testing.....there are many here who can be of much help if you have questions.

[emilyallsz]

thanks again!
yeah about 3 yrs. ago i had such recurrent yeast infections that exploded into all out pain disaster that gets termed vulvadynia- basically pain of the vulva. all variety of pains sent me to a specialist in boston who is the one who had me on the diflucan for three years (sometimes once a week, sometimes down to once a month). her theory was as long as you kept the yeast away then then my nervous system would chill back out again and the pains would also stay away.
about 10 years ago i went on the lamisil tablets for the fingernail/ringworm issues and that was back when they were really reluctant to give such heavy duty drugs. they monitored my liver and i was only on it on a once every three week cycle thing for a short time. so always in my mind i was not sure about being on the "safe" diflucan. it cleared up another batch of the fingernail fungus while i was on it for the vaginal yeast and so i really felt they (fungus & v.yeast) were connected in my body or at least the drugs were similar. however the doc usually brushed off any questions about being on it longterm. i began feeling worse and worse. never quite having a vaginal yeast infection but when i went down to once a month on the diflucan i would get flare ups of the fingernail rash etc. and i never relly felt "good" vaginally. always a bit"hyper" still down there, sort of agitated feeling! in any case, i started having aches and pains all over, headaches and digestive issues, and chronic diarhea (sp) and even thought i was losing my hair. i never connected it to the diflucan (even though i would ocassionaly search the net for side effects) and the doctor would attribute my new complaints to some overall disease that i really just felt i didn't have.
i finally went to see a naturopath because i really felt something was imbalanced in my body that caused the susceptibility to yeast etc. and if i could figure that out i could really feel healthy again. i was totally completely healthy as a child except for migraines. i thought maybe i had a food allergy that was causing all my symptoms...
i found myself saying on the phone to the naturopath's receptionist "well,
i've been on the diflucan for..." and realised that i really just didnt want to be on that sort of drug anymore. the receptionist said, "hows that on your immune system?" and i finally started to put all my recent sickness together. i had pigged out at thanksgiving, vomited, and continued to feel nauseaus for about two months at that point. and finally after getting some regular bloodwork at my annual gyn and the liver function coming back funny, i knew what particular side effect to look for on the internet with diflucan. of course, i had them all! and when i thought i was losing my hair i really was. i of course couldnt get my gyn to admit whether the other specialist should have been monitoring my liver function (the diflucan info on the pfizer page says in huge letters this is a risk and all reputable med sites you should be monitored while on it ) and i never had one test in three years. i did not schedule my next appointment with the specialist and not sure if i should at least write a letter saying something....

the naturpotah has been great and really treating my digestive tract. right now we are looking at whether i am "keeping" the probiotics or have some gut issues (leaky gut or somethign)while we wait for some results on the celiac. i want so badly to get rid of all these stupid little symptoms.
it's been a long road and hard to not have people (including your mother) think that you are crazy for just persisiting in wanting to feel healthy again. like if you just relax you will miraculously feel good again and stop having diarhea and skin and yeast infections. sigh.. thanks for listening. today i need this forum.!

[Noatak]

After reading of all your problems, I would urge you to do the gene testing. My problems with candida affected my GI tract only and gave me symptoms that were very similar to CD. I really think that once your GI tract is compromised by Celiac's that is undiagnosed, the balance of all that healthy flora and fauna that is supposed to be there and keeping everything in good working order, is exhausted and you end up with a very acid environment. Remember, you do not digest these proteins and that can really do a number on your gut. Then yeast begins it's long, ugly overgrowth. Your immune system is compromised and has trouble keeping things in check.

I have no symptoms anymore since going GF and have gained 11 pounds, so know I am absorbing. I can also eat yeast containing products and sugar without getting all messed up like I used to. It was a lightbulb moment for me. I am not saying you do have CD but it should be absolutely ruled out as your symptoms are highly suspicious! Your ethnicity is a factor also.

I can give you the name of 2 good doctor's that practice integrated medicine in this area, if you are getting stuck with the ones you are seeing. They are open minded and use Eastern medicine theories also...meaning that if you have a problem in one area of your body, they don't just look at that one area. One specializes in Celiac's and actually has CD herself. Neither one will tell you that you need a shrink if they can't find the problem!

[emilyallsz]

thanks! the good thing is that i got off the diflucan and so i am feeling better in all those various ways! it is basically just back to square one with the yeast since being off the diflucan and taking acidophilus i am still having yeast flareups. but at least i feel now i am working in the right direction and with a doctor who is soooo helpful and really listens and is integrative (as you mentioned!)
of course, i had some depressive episode back after first getting the fingernail issues and was eating tons of carbs then! and of course i think alot of the recent yeast was triggered by a prednisone treatment for a strange rash a few years ago. i have a mum and her sister with thyroid and diabetes so all of these things seem like factors/triggers that i feel confident investigating the celiac situation. i even just spoke to my mother who has brothers with strange rashes. .. hmm..
i am anxiously awaiting more news from my tests, so i will keep you posted and thanks again--

you should definitely get to ireland too loved london, museums and markets etc, but something different about ireland- a little more laidback or something sweeter or lighter in the air

[raelara]

Irish ancestry makes you more susceptible to this??? I didn't know that! I have Irish ancestry on both sides. That explains a lot. It makes me wonder if I should have my relatives try going gluten free.
_________________
Jenni Sherriff
Mommy to Ayanna - 5/26/05
Aspie, PCOS, and Suspected CD

[Noatak]

Yup! Northern Europeans have a high incidence of CD, as do Italians. It's so common that all Italian children are routinely tested at age 5! Kind of makes you wonder why American doctor's are so ignorant regarding CD, considering many of us are of European extraction! Unfortunately, the CD gene didn't stay in Europe.

[raelara]

All Northern Europeans?? Do you have specifics on which other nationalities? My ancestry is, as far as I know right now, a mix of Austrian, German, Irish, Danish, Portugese (Azores) and English.

I would love any other information you could give me, particularly if there is somewhere online that I can look into this more as it seems my entire family might be at risk, including my daughter.
_________________
Jenni Sherriff
Mommy to Ayanna - 5/26/05
Aspie, PCOS, and Suspected CD

[TenKLady]

This is in response to whether a CD diagnosis will affect medical insurance. I was diagnosed with CD in 2002 and my daughter was diagnosed this year. I have had regular blood testing done and I am down to getting tested once a year. Once I started the GF diet I have not had medical issues. We recently tried to take out our own insurance policy due to the fact that the coverage we have through my husband's employer is extremely expensive and they just raised the rates. The only way the new company would insure my daughter and I is with a rider that would deny coverage with anything relating to CD or that could have been caused by CD. We ended up keeping our insurance through my husband's employer which costs us $17,000.00 per year for family coverage.

Laura