Is It Definitely Worth It?

[SkyBlue4]

I am wondering if you feel that having Celiac confirmed with a biopsy is for the best?

That might sound like a strange question but I was reading on another forum about the downside of being a confirmed Celiac- increased health insurance rates. Who needs that?!

 

Did anyone experience any problems with their insurance after a biopsy confirmed you have Celiac Disease?

 

I have positive labs, lots of symptoms, other autoimmune issues and a positive family history. I know the biopsy is the gold standard to confirm but hate to have it done, have the label and then wish I had just skipped it and gone gluten free. I don't see the GI doc until September so there's lots of time to research (and stress). 

[bfavs]

 I am waiting impatiently for answers to this question and would like to leave my journey so far, too.

 

In May, at my annual exam, my dr. ordered the celiac blood test and told me to cut gluten to see if I feel better.  When the blood test came back she told me I had a gene for celiac but probably didn't have it and just to go gluten free.  So, that is where I am.  It is pretty unsatisfying.  While I feel better, I don't feel 100%.  I know sometimes I inadvertently eat gluten.  I also don't know if my energy levels are low because I am not eating much -- gluten was my main food group -- or because of withdrawal.  I'd appreciate any thoughts/advice.

 

As Skyblue4 mentioned, I have some definite reasons not to be diagnosed but the gray area I am in right now is hard for me.  

 

Thanks! 

[luvs2eat]

I was diagnosed with blood work and my GI told me an endoscopy wasn't at all necessary but that I HAD to be gluten free. I ended up having an endoscopy several years later for other issues and there was evidence of celiac in there.

[mommy2krj]

I think that this disease is incredibly difficult to truly diagnose. The fact that you can have negative blood work but a positive biopsy or positive blood work and a negative biopsy or have both negative blood work and negative biopsy and still have symptoms and feel better going gluten free is crazy to me. Nothing seems cut & dried.

 

My son had positive blood work and a negative biopsy but had scalloping in his intestines that is said to be a precursor to Celiac but he doesn't have the genes so he "can't possibly have" Celiac even though there are people out there that have it without having the genes. *sigh* I'm thinking the doctors still simply don't know.

All that said....if having the diagnosis means you'll follow through with the diet....get the diagnosis. If, however, you are comfortable with going gluten free and doing it the way you know a Celiac needs to then I don't see any problems with it. If it makes you feel better, go for it. Our entire house is gluten free (though, my older kids and husband are more like gluten "light" as they all tested negative on the tests) and I feel better even though I tested negative. We're still working on getting my son to feel better....I'm hoping with school starting the exposure to the kids in the neighborhood is less and he stops eating things he isn't supposed to. Short of keeping him inside I can't figure out what to do.

Also....the fear of an increased risk of lymphoma has me keeping him gluten free even if he is just "intolerant" and it doesn't cause the damage like it would with Celiac.

I'm finding I don't really miss the gluteny stuff. We started this diet in July and I personally don't look at it like a diet but more like a lifestyle change. Though, that may be because I've never been a big dieter anyway. Also, we like to cook. We've discovered veggies that we normally wouldn't have eaten.

 

Also....I don't know that our health insurance has increased or will due to him being diagnosed or not....it's something that is completely controlled by food so if it didn't go up when my husband started with the high cholesterol and high blood pressure I don't understand why it would for this. But, I do know that health insurance is a royal PIA so....it could all go through the roof. Who knows? Are there other issues you're dealing with on top of this that would exacerbate things? I think that would be a bigger question. Like with my son...it's early and he wasn't nearly as sick as some people I've read about. Mainly just some constipation and vomiting. He's on the small side (especially when compared to his siblings at the same age) but he's still growing. So...I think even that is on an individual basis.

[notme]

i wish there was better testing  

 

part of the criteria for determining whether you should be on a gluten-free diet is your response to the diet.  that, combined with testing and endoscopy, and i think if you have DH that is a big deciding factor, as well.    if having a formal diagnosis will make you comply with the diet better (i mean *completely* gluten free - not just going to denny's and ordering off the gluten free menu.  oops they put toast on the plate i just won't eat that but the rest is fine......      lolz - NO) then, for your health's sake, do get tested.  

 

unfortunately, mommy2 is correct - most doctors just don't know.  i visited my (gp) doc on wednesday and we discussed celiac/ncgi and the gluten free lifestyle.  i was surprised when he told me that when he is recommending the diet, he just "refers them to celiac.com" but then again, not surprised at all.  btdubs, all my vitamins are back where they should be - i don't take a supplement for anything  but vitamin D, and i am keeping my healthy weight on.  so, if gluten is your problem, the diet sure does work. i am a far cry from the wrecked mess i was 3 years ago.  it IS a huge change, but i wouldn't want to ever go back to the miserable, sick-all-the-time me.  

[cyclinglady]

I don't know if there would be a problem in obtaining health insurance specifically with Celiac Disease, but years ago I had problems getting an individual insurance policy because of Hashimoto's Thyroiditis (which is another autoimmune disorder).  Fortunately, the laws were changed and I was able to get insurance (HIPPA regulations) but had to pay a higher rate.  Am looking forward to more changes regarding pre-existing conditions and the opportunity to change providers.  It's not an issue with employer-provided health insurance.  

 

That said, I'm officially diagnosed with celiac disease (blood tests and biopsy) but my husband has not.  He went gluten free at the recommendation of both his GP and my allergist (MD) 12 years ago.  He refuses to do a gluten challenge since he knows gluten makes him sick (I don't blame him).  I went through the formal diagnosis because 1) I had no abdominal symptoms and I was in disbelief, 2) I wanted to help others in my family with comparable issues.

 

It's a hard call to make.  

[0range]

I don't know if there would be a problem in obtaining health insurance specifically with Celiac Disease, but years ago I had problems getting an individual insurance policy because of Hashimoto's Thyroiditis (which is another autoimmune disorder).  Fortunately, the laws were changed and I was able to get insurance (HIPPA regulations) but had to pay a higher rate.  Am looking forward to more changes regarding pre-existing conditions and the opportunity to change providers.  It's not an issue with employer-provided health insurance.  

 

Really? Didn't know that I heard from a person working at one agency that hypothyroidism doesn't really alter your insurance rate, provided there are no complications from it. Noooo! I can't believe this is how it works in the states. 

[nvsmom]

i skipped the biopsy. I had a positive tTG IgA and EMA IgA, as well as symptoms for decades, so that was enough for me to go gluten-free. I figured that if I had other problems that persisted after i had treated myself with a gluten-free diet, I could always request a biopsy at a later date.

 

I'm in Canada so a diagnosis did not affect my health care coverage. It did make it slightly more expensive for life insurance though but I guess that is fair enough.

 

It's a personal choice. Do whatever you feel is best as long as you know you will be able to commit to the diet at the end of all testing.  Good luck! 

[cyclinglady]

Really? Didn't know that I heard from a person working at one agency that hypothyroidism doesn't really alter your insurance rate, provided there are no complications from it. Noooo! I can't believe this is how it works in the states. 

It's true!  I was rejected by National carrier but they accepted my overweight, high cholesterol hubby!  Even my doc wrote a two page level stating that I was participating in Triathalons, but they still refused me!  (I have kept their rejection letter!)  This has been a huge problem in the US.   There are plenty of people, like me, who can afford insurance but can't get accepted for pre-existing conditions but that's soon to change 1/2014.

[AlwaysLearning]

I'm in the U.S. and self employed and just recently shopped for new health insurance. If I had had a confirmed diagnosis with an endoscopy, it would have raised my rates. They even made me fax them a signed statement that stated that I did not have a confirmed case of celiac before they approved my application. 

My gastroenterologist says that it really doesn't matter if I have the endoscopy - that if I'm reacting to gluten, I definitely shouldn't be eating it - and that having a "sensitivity" is no better than having celiac. And from what I can tell, we're just beginning to understand gluten reactions of any sort so the science is sure to change in the near future.

I researched the endoscopy test before deciding and after learning about false negatives, the possibility that vilii damage could be a later-stage symptom, and damage being possible in other locations of the digestive tract, I couldn't rationalize the expense, hassle, or the need for an invasive procedure.

In the U.S., confirmed celiacs can also deduct the difference in the cost of gluten-free foods. That means that if a loaf of regular bread cost $2 and gluten-free bread $3, you'd be able to deduct the $1 difference in price, saving $.25 in your taxes. I don't buy that many gluten-free products, nor would I want the hassle of keeping track, preferring to avoid processed foods and cook from whole ingredients where it is easier to avoid minor contaminations. Saving a couple of dollars a month isn't going to offset the increased cost of health insurance for me.

Most of the reasons I see for wanting the endoscopy seem to relate to being able to follow up later to make sure that healing is occurring, the desire to be able to state definitively to friends and family that their disease is real when they encounter push back, or perhaps a need to convince themselves that they need to stay gluten free when faced with temptation. But people who live in countries with different types of health care systems may require an endoscopy diagnosis in order to get the medical care that they need.

Everyone's symptoms, food-sourcing and preparation options, health insurance, and social interactions vary so what may seem like a necessity to some, may be unhelpful to others. For me, staying gluten free is a no brainer.

[0range]

It's true!  I was rejected by National carrier but they accepted my overweight, high cholesterol hubby!  Even my doc wrote a two page level stating that I was participating in Triathalons, but they still refused me!  (I have kept their rejection letter!)  This has been a huge problem in the US.   There are plenty of people, like me, who can afford insurance but can't get accepted for pre-existing conditions but that's soon to change 1/2014.

 

Oh jeez, that makes no sense seeing how conventional medicine sees hypothyroidism as a very 'treatable' disorder. 

[SkyBlue4]

I don't know if there would be a problem in obtaining health insurance specifically with Celiac Disease, but years ago I had problems getting an individual insurance policy because of Hashimoto's Thyroiditis (which is another autoimmune disorder).  

 

I have Hashimoto's (my only diagnosis at the time) and applied for Life Insurance. The company did not want to insure me but offered my husband, who is quite overweight, a rather large policy. 

 

I'm in the U.S. and self employed and just recently shopped for new health insurance. If I had had a confirmed diagnosis with an endoscopy, it would have raised my rates. They even made me fax them a signed statement that stated that I did not have a confirmed case of celiac before they approved my application. 

 

This is my concern. I really don't need one more reason (diagnosis) for my rates to increase. You certainly make a good argument for skipping the endoscopy and going right to the diet. 

[gatita]

For me the difference between my official diagnosis of "wheat allergy" -- and not celiac -- means my insurance won't cover followup tests because they're not "medically necessary."

 

That's been frustrating when I wanted my B12 and vitamin D levels tested and they wouldn't cover it.

 

Although I do get classic allergy symptoms like hives, swollen lips and eyes, my main problems with wheat are severe GI issues and joint pain. So I seem to have intolerance plus a true allergy. I tested negative on all celiac tests except a high anti-gliadin antibody level once.

 

Lots of cases fit no easy category, and the official diagnosis can affect the coverage of your followup treatment.

[CeliacInSenegal]

Given that there is no medication that gets prescribed, does your insurance company necessarily know what the results of your biopsy are? It certainly doesn't seem fair to punish people with Celiac more than people with obesity, high blood pressure, etc, when a Celiac person can be completely healthy through diet alone.

 

For me personally, I needed the endoscopy confirmation to really commit myself to going gluten free for life. Even with positive blood tests, I still didn't believe I had Celiac until I had the biopsy results (and even then, I tried to search for alternate diagnoses!). I think whether you want that confirmation for your adherance to the diet is really a personal choice. Many people on this site seem to be able to fully commit without the biopsy, but for me, lingering doubts would have been a problem and made me more susceptible to taking chances when getting safe food becomes really difficult.

[LisaRae28]

I would have never taken any of this crap nearly as serious as I do now had I not gotten a biopsy tho in all fairness they would have never done that had they not already been looking for ulcers and my bloodwork would not have indicated it. I am learning this is a disease which makes it absolutely necessary for you to really learn how to be your own advocate especially with docs. Not to say at a you shouldn't have a little trust and faith in em but they don't have to actually experience what you're going thru they just have to diagnose and prescribe treatment... Had I already for some ungodly reason given up my pasta and bread and cookies not to mention my cherished pizza and noticed a difference in the myriad of health crap I grew accustomed to then I'm not sure i could say the same... That's how I was finally diagnosed tho and even reading about false positives and personally having a false negative on bloodwork I would have had doubts (lol it took past the 2nd biopsy for me to stop asking him for a differential diag as is)

[love2travel]

"For me personally, I needed the endoscopy confirmation to really commit myself to going gluten free for life. Even with positive blood tests, I still didn't believe I had Celiac until I had the biopsy results (and even then, I tried to search for alternate diagnoses!). I think whether you want that confirmation for your adherance to the diet is really a personal choice. Many people on this site seem to be able to fully commit without the biopsy, but for me, lingering doubts would have been a problem and made me more susceptible to taking chances when getting safe food becomes really difficult."

This is precisely how I felt. The biopsies left absolutely no doubt in my mind. It is possible I would have not taken the positive bloodwork seriously enough.

[cyclinglady]

Given that there is no medication that gets prescribed, does your insurance company necessarily know what the results of your biopsy are? It certainly doesn't seem fair to punish people with Celiac more than people with obesity, high blood pressure, etc, when a Celiac person can be completely healthy through diet alone.

 

For me personally, I needed the endoscopy confirmation to really commit myself to going gluten free for life. Even with positive blood tests, I still didn't believe I had Celiac until I had the biopsy results (and even then, I tried to search for alternate diagnoses!). I think whether you want that confirmation for your adherance to the diet is really a personal choice. Many people on this site seem to be able to fully commit without the biopsy, but for me, lingering doubts would have been a problem and made me more susceptible to taking chances when getting safe food becomes really difficult.

It's called disclosure.  You typically have to disclose every single diagnosis over a 5 to 10 year period.  If you fail to disclose even a visit to the doctor for the flu, the insurance company may deny future claims that may be totally unrelated (i.e. heart attack, brain tumor) and terminate your policy.   Cases of termination and failure to pay show up often in the news, so it's real.  

 

Fortunately, this will be resolved in January 2014!  Already, we've seen a reduction in our monthly rates (probably the extra we've been paying for my "pre-existing conditions").  

[CeliacInSenegal]

CyclingLady, thanks for the explanation. I was unaware of that, as my employer-provided healthcare has never asked me any questions related to diagnoses or chronic conditions. Maybe they are hoping my ignorance of disclosure rules will allow them to get out of paying for benefits in the future! I'm glad to hear that will be changing in 2014.

 

As for your lowered rates, that could also be due to the new 80/20 rule that insurance companies have to spend 80% of premiums on actual healthcare. Insurance companies have had to give millions of customers refunds this summer because of this rule.