Importance Of Getting Professionally Diagnosed

[JBarnett]

I recently believe I inadvertently found out I suffer from Celiacs Disease. My girlfriend recently determined she was gluten intolderant and I decided to join her in the change of diet as a way of support. Since High School, I have suffered from what I thought was severe, painful itchy acne on my buttocks. Over the years, I have tried various acne medication, dietary changes (became vegan) and had no results. I noticed that almost immediately after starting eating gluten-free, it began to clear up. I thought it was maybe just coincidence, but I recently had a friend visit and decided to splurge and ate a lot of glutenous things. Almost immediately it returned with a new found vengeance.

 

So, I began to research Gluten and what I still thought was 'acne', and discovered Dermatitis Herpetiformis. I looked at images and symptoms and realized this was what I was suffering from. I then made the link to Celiacs. At that point, I began researching all of the other symptoms and found myself relating to the majority of them. As a child, I was in and out of the hospital and ultimately diagnosed with Irritable Bowel Syndrome. I suffer from anemia, had a delayed onset of puberty, have struggled with being underweight my whole life, struggled with depression, fatigue, Eczema, Keratosis Pilaris, dry skin, etc etc I also noticed that my bowel movements were exactly like the descriptions and that has also miraculously improved since cutting out gluten.

 

I suppose my question is, how important is it that I get professionally diagnosed? Are these symptoms enough to just assume it is what I am suffering from and continue with my path of eating gluten-free or should I seek a doctor's opinion? My main reason is due to the fact that I do not have health insurance and am struggling financially.

 

Any feedback is greatly appreciated! Thanks!

[bartfull]

Quite a few of us here have no official diagnosis. As long as you know you feel better off gluten I don't see any reason you need a doctor's diagnosis. Do read the Newbie 101 thread in the coping section, and then check out the DH section. (If that doesn't scare you into being scrupulously strict on the diet I don't know what will!)

 

So welcome, and if you have any questions, fire away!

[cyclinglady]

I was formally diagnosed this year. Other than anemia, I did not have any other symptoms. My husband has been gluten-free, at the suggestion of my allergist and his MD, for 13 years. That is why I was astounded when my gastro recommended an endoscopy when he did my routine colonoscopy (positive blood test).

My husband knows that gluten makes him sick so he never cheats! He refuses to do a gluten challenge. Why bother?

If you can get a formal dx, he would the first one to tell you that you get more support from family, friends and medical in general. But he has done well without one.

[BelleVie]

I feel that if it's financially possible, it is important to get a diagnosis. I have found that having a diagnosis makes my friends and family take my diet much more seriously than they would otherwise, not to mention ME taking it seriously. I also found that after getting a diagnosis, I followed up on a few issues that many celiacs commonly suffer from, and found that I have severe osteoporosis for my age. Now I'm focused on treating it. I never would have known had I not gotten a diagnosis. 

 

That being said, I hear you on the no insurance thing. I'm lucky enough to live in Asia where I can afford medical care, but if I were in the U.S., there's no way I would be able to get the kind of care that I am getting here. If you really can't get tested, I think you have to make a choice to commit, COMPLETELY, to the gluten free diet. If you go halfway, you could open yourself up to a lot of other problems and suffering in the future. But it sounds like you really have to deal with the repercussions of eating gluten, which show up in the form of DH for you, so you're probably not as tempted to cheat as some people might be! 

[w8in4dave]

I feel the same way BelleVie does, If you can I'd get the professional DX. It sure helped me! I am not so sure I'd of been so serious about the DX if I wouldn't have been DX'd. But If you cannot get DX'd just take it real serious. I hope you feel better! 

[Gemini]

That being said, I hear you on the no insurance thing. I'm lucky enough to live in Asia where I can afford medical care, but if I were in the U.S., there's no way I would be able to get the kind of care that I am getting here. If you really can't get tested, I think you have to make a choice to commit, COMPLETELY, to the gluten free diet. If you go halfway, you could open yourself up to a lot of other problems and suffering in the future. But it sounds like you really have to deal with the repercussions of eating gluten, which show up in the form of DH for you, so you're probably not as tempted to cheat as some people might be! 

The statement you make about medical care in the US is not true.  Anyone can walk into an emergency room and get free medical care here.  Taxpayers foot the bill but they do in every other country also.  You can also apply for Medicaid if you are financially strapped......really financially strapped and not faking it, and get free medical care also.  There are ways to get help with seeing a doctor here. 

 

As for an official diagnosis, it only matters if you cannot stick to the diet without one.  It seems that the OP has severe enough health issues that impact their lives enough that they may be able to do that. As for any follow-up related testing, once you go gluten-free, you can always research that and ask for those tests yourself.  I've never had any doctor in the US refuse a test I asked for, if it had something to do with symptoms that I may be having. Quite to the contrary, they usually want to do too much testing in the form of defensive medicine.  There are ways to work a doctor into getting what you want.

[bartfull]

"The statement you make about medical care in the US is not true. Anyone can walk into an emergency room and get free medical care here. Taxpayers foot the bill but they do in every other country also. You can also apply for Medicaid if you are financially strapped......really financially strapped and not faking it, and get free medical care also. There are ways to get help with seeing a doctor here."

 

Yes, a person can get treated in an emergency room, but they won't do celiac testing in an emergency room. If you are doubled over in pain they will rule out appendicitis or heart attack, then tell you to go home and make an appointment with a GI.

 

And unless you have small children or live in one of the states that expanded medicaid, you can't get that either.

 

I am uninsured, childless, living in a state that did not expand medicaid, and I am about as broke as I've ever been. With propane costing five bucks a gallon and the temperature at 17 below zero, it looks like I'm going to stay that way for a while. If it weren't for the doctor who comes down twice a month to run a free clinic here, I would never get to see a doctor. As it is, any testing, or lab work has to be done at the hospital and must be paid for (full price) up front.

[mmarksbury]

"The statement you make about medical care in the US is not true. Anyone can walk into an emergency room and get free medical care here. Taxpayers foot the bill but they do in every other country also. You can also apply for Medicaid if you are financially strapped......really financially strapped and not faking it, and get free medical care also. There are ways to get help with seeing a doctor here."

 

Yes, a person can get treated in an emergency room, but they won't do celiac testing in an emergency room. If you are doubled over in pain they will rule out appendicitis or heart attack, then tell you to go home and make an appointment with a GI.

 

And unless you have small children or live in one of the states that expanded medicaid, you can't get that either.

 

I am uninsured, childless, living in a state that did not expand medicaid, and I am about as broke as I've ever been. With propane costing five bucks a gallon and the temperature at 17 below zero, it looks like I'm going to stay that way for a while. If it weren't for the doctor who comes down twice a month to run a free clinic here, I would never get to see a doctor. As it is, any testing, or lab work has to be done at the hospital and must be paid for (full price) up front.

I spent over a year convinced I had Celiac because of 2 positive blood tests.  I skipped the endoscopy for a few different reasons, but ended up having it done a year and a half after my last positive blood test.  It turns out I do NOT have Celiac.  That year and a half was terrible...not knowing for sure.  I even convinced myself that I was having symptoms I don't have.  Do yourself a favor, get the diagnosis or rule it out.  You'll be better off.

[NoGlutenCooties]

 I skipped the endoscopy for a few different reasons, but ended up having it done a year and a half after my last positive blood test.  It turns out I do NOT have Celiac.  

 

I read your previous post where you told us your entire story (thanks again!) and just wanted to say - for anyone who didn't read the other one - that YES, the poster did a full gluten challenge before getting the endoscopy.

[ragtag]

I agree with those above who say that it is valuable to get a diagnosis if it is at all feasible. I also wanted to add that if you do suffer from dermatitis herpetiformis, you likely would not have to have an endoscopy to get a diagnosis - with DH they can simply biopsy the skin. I haven't had that done myself, but I have to think that it is less expensive (and less invasive) than an intestinal biopsy. 

Also, getting an official diagnosis can be beneficial in dealing with insurance (for instance, if they refuse to cover specific testing/treatment if complications arise down the road). 

[bartfull]

I would have loved to get a diagnosis so I could keep an eye on my healing, plus I would have gotten my nutrient levels tested. But with no insurance there is no way I could pay for all of that. I am relatively sure I DO have celiac because A.) My mom had it (and she did have an official diagnosis), and B.) my symptoms cleared up on the gluten-free diet.

 

But I still don't know what my nutrient levels are. I just keep taking vitamins and hope for the best.

[glux]

I spent over a year convinced I had Celiac because of 2 positive blood tests.  I skipped the endoscopy for a few different reasons, but ended up having it done a year and a half after my last positive blood test.  It turns out I do NOT have Celiac.  That year and a half was terrible...not knowing for sure.  I even convinced myself that I was having symptoms I don't have.  Do yourself a favor, get the diagnosis or rule it out.  You'll be better off.

 

From what I've been reading on this site, it's possible to have a false negative biopsy right?

[kareng]

I spent over a year convinced I had Celiac because of 2 positive blood tests.  I skipped the endoscopy for a few different reasons, but ended up having it done a year and a half after my last positive blood test.  It turns out I do NOT have Celiac.  That year and a half was terrible...not knowing for sure.  I even convinced myself that I was having symptoms I don't have.  Do yourself a favor, get the diagnosis or rule it out.  You'll be better off.

 

 

How does this mean you don't have Celiac?  You had two positive blood tests.  After a year and half gluten-free, an endo should be negative.  If you aren't eating gluten, you will heal your intestines and there should be no damage found.

[glux]

How does this mean you don't have Celiac?  You had two positive blood tests.  After a year and half gluten-free, an endo should be negative.  If you aren't eating gluten, you will heal your intestines and there should be no damage found.

 

See post #9.

[mmarksbury]

How does this mean you don't have Celiac?  You had two positive blood tests.  After a year and half gluten-free, an endo should be negative.  If you aren't eating gluten, you will heal your intestines and there should be no damage found.

 

As glux and NoGlutenCooties pointed out, I was on the 6 week (actually 8 week) gluten challenge.  I went to town...ate any gluten I could find.  While my villi were unaffected, my waistline took a beating.

 

You can read my other post here which goes into a lot more detail:

https://www.celiac.com/forums/topic/106290-a-word-of-caution-to-preliminaryself-celiac-diagnosis/#entry905369

 

I'm glad this came up though, because self education on the disease and how the tests work is important.  I spoke with one GI doctor (yes a specialist) that wanted to scope me, even though I had been off gluten for over 6 months when I spoke to her.  She actually said, "I'd like to scope you".   She apparently didn't understand the disease very well.  Lets pretend for a minute that I did have the disease...if I had followed her advice and had the endoscopy done, it would likely have been a false negative and I would have spent much of my life dealing with issues that a doctor would likely categorize as IBS since I had already been screened for Celiac.

 

Like in any profession, there are some really exceptional doctors, some really bad doctors, and a whole lot of mediocre doctors somewhere in the middle.  Your typical primary physician isn't likely to know much about Celiac unless they've had cases and picked up some information so your best bet is to do your own research and try to get connected with a GI specialist.

 

[nvsmom]

If your symptoms improve on the gluten-free diet, I would say that it's not crucial to get diagnosed as long as you will stay on the diet. If you feel better gluten-free, then you have either celiac disease or Non-Celiac Gluten Intolerance (NCGI) and for both treatment is the gluten-free diet.

 

If you (JBarnett) decide to do testing, you have three options: the blood tests, the endoscopic biopsy, or a biopsy beside your dh rash. The first two will only work if you have done a 8 or 2+ week gluten challenge... and chances are you won't have dh if you are gluten-free either.

 

Keep in mind that celiac disease tests are NOT foolproof. There are many mnay people on this board who have one positive blood test and not another, or a positive endoscopic biopsy and negative blood tests, or positive skin biopsy and negative endoscopic biopsy, or positive blood tests and negative endoscopic biopsy, Not many celiacs are positive in all tests. From what I have seen, about half pass at least some of their tests, but that doesn't mean you don't have celiac disease... It's like being tested for diabetes, maybe fasting glucose is sky high but the A1c is totally normal - that doesn't give one license to eat cake and soda though just because one test is fine. KWIM? We fail those tests for a reason, and with celiac tests, it's usually due to celiac, although in rare cases there are other causes... But there is always a cause.