Is This A Huge Issue?

[Waitingindreams]

I'll try to keep this brief - Back in July of 2013 when I was really feeling sick (allergies out of control, constant diarrhea, not absorbing any food (not to be graphic, but it would come out within 20 minutes or so looking exactly how it went in, if you get my drift) I went to my doctor (primary care physician) and he gave me a blood test for celiac disease. The results came back positive, and he told me to go on a gluten free diet and see him in 6 weeks. I immediately felt better, I saw some of my skin issues go away, I was less tired...etc etc. I felt so relieved to have an answer. I really feel that if I waited too much longer, I would have ended up in the hospital. Eventually, I pretty much stopped eating because (seemingly) everything was making me sick. I don't know if this is what pushed him to just declare celiac disease and 'test' it without waiting for a biopsy, or what - but I have never felt that sick again since giving up gluten.

 

I joined this forum a few months later, and the support has been overwhelming. I've learned so much from you guys! But after researching on my own and reading other stories here, I'm starting to get a little worried. Everyone keeps saying to be "officially" diagnosed, you need a blood test and a follow-up biopsy to really confirm that you have celiac disease. I've never had an endoscopy, colonoscopy, or etc done. Celiac disease seems to fit - gluten makes me deathly ill, and with all of the other issues I have, I know it can't just be gluten sensitivity. So what am I supposed to do now? I've been gluten free (apart from a few mistakes here and there) for almost a year now. I can't just start eating gluten again so that I can get a biopsy done. I don't know which blood test I was given, all I know is that it was a blood test for celiac disease. It took 4 days for the lab results to come back, if that helps.

 

I also talked to another person in my state whose son has celiac disease. She says he was diagnosed with just a blood test as well. I don't know if this is just my state, or what. I don't yet have a GI, but I'm going to get one soon. (My doctor had told me there was no reason to have one) I'm not really sure what to do or think.

[joannw]

Hi Waitingindreams

 

I am looking for similar input -- diagnosed via blood tests in February, saw big improvements on a gluten free diet, and am now wondering if I should follow through with the biopsy or just keep doing what works?!  How do you think an "official" diagnosis would benefit you?

[Waitingindreams]

I'm not really sure that it would! I'm pretty certain it's celiac disease regardless, I just want to make sure I'm not missing anything else. I think I might have a thyroid issue, I am getting tested for that tomorrow.

 

I'd like to have everything checked out to make sure it's okay, but I was told you could do that with repeated blood work. That's  certainly preferable over an endoscopy!

[joannw]

Took me a minute to find my way back here, waitingindreams -- thanks for your encouragement!  Now that I know blood tests can keep tabs on this, I think I am going to go that route.  My doctors are all very diligent about ordering every test in the book and referring me to other specialists -- a bit too much, really! 

[cyclinglady]

My husband has survived 13 years without an official diagnosis. I had the endo because I was mildly celiac on the blood test and I was already set-up for a routine colonoscopy.

You know gluten bothers you. I think the blood test is enough since you have been gluten-free for so long and it is not worth doing a challenge at this point.

[ravenwoodglass]

You are diagnosed. You had positive blood work and good results from the diet. Your doctor has told you that you have celiac.

If you develop new issues of course get them checked out. Since your blood work was positive your doctor can recheck it to see if your levels are lower or into normal ranges now that you have been gluten-free for a bit and healed. That also would reinforce that your doctor gave you the right diagnosis. 

[NatureChick]

I greatly dislike how much pressure is put on people using this forum to get endoscopies and follow-up testing.

My two cents on endoscopies:

Pros:
• Can compare damage and healing with follow-up tests. Helpful if you're part of the small percentage that doesn't seem to heal.

Cons:
• Have to have an invasive hospital procedure that requires anesthesia.
• Have to pay for the procedure, possibly lose time from work, etc.

• False negatives on endoscopies are not uncommon and some studies have shown that villii damage can be a later symptom, so the test may not be indicative of whether or not you have celiac, but more a test of how much damage has already been done.
• Doctors might pressure you to have procedures so that they can be paid for performing procedures.

If you don't think that the blood tests were reliable enough on their own to be a definitive diagnosis, then that would be a reason to have further testing. Doing your own research into whether or not the type of tests you had are considered the most-reliable seems to be a good place to start.
 

Or if you continued to have symptoms that didn't resolve after going gluten-free, an endoscopy would be one of several types of tests that might tell you more about what is going on. But even then villii damage will heal, so depending on how much damage you had originally or how long you've been gluten-free, an endoscopy may or may not show anything anyway.

But ultimately, it is your decision. Don't let anyone pressure you in either direction and do what you're most comfortable with.

[Georgia-guy]

Waitingindreams, the "official" diagnosis is saying to get some sort of testing done. What you want is a doctor to say "you have celiac". Once that is said, there's really no medical professional that can dispute it. The exact testing method (blood, biopsy, or both) isn't as important as the doctor saying those 3 words. With a positive blood test, the only reason I really see to undergo a biopsy is to see the extent of villi damage, and monitor the villi healing. That is why I'm not sure if I will do a biopsy yet, that depends how soon my doc can get me scheduled for one.

[Waitingindreams]

Thank you for the responses, everyone!

 

I do feel like the blood test is enough...I have far too many intolerances and other health issues for this to just be NCGS. And I know gluten bothers me. Part of me wishes I did have one done, just to see how damaged my intestines actually were from the beginning - now I'll never really know how much healing I had to do, or how much healing still needs to be done - but I do think it's too late to get one down now. I think the repeated blood tests every 6 months or every year would be my best bet. Unfortunately, my PCP refuses to always re-check my levels..so I think it's time I started seeing someone who specializes in celiac disease and only see him for 'regular' ailments, like bronchitis or what not. 

 

There really is a lot of emphasis on getting an endoscopy done, NatureChick! And not even just on this forum, but on some celiac sites. But yes, Georgia Guy, I did get those three words! 

 

I don't know if you should do one or not either. I've heard that in order to get one done you need to be eating gluten, and if you're already gluten free then there's really no point, especially since it could be months before you can get an appointment. It's up to you, but if it's not needed I wouldn't do it! I just wasn't sure, the general consensus seemed to be that a biopsy was needed for "official" diagnosis.

[BlessedMommy]

I've survived without even having positive blood tests. (Not for lack of trying, though, the gluten challenge that I tried to do to get the blood tests landed me in the hospital!)

 

I would agree that there is really no point in going back on gluten to get a biopsy. You've already been diagnosed. 

[Waitingindreams]

That's really scary that you ended up in the hospital I think it's ridiculous that, in order to be accurately tested, people need to eat gluten for that long to be diagnosed. Hopefully they come up with something more efficient/safer. 

 

Thank you! I agree too, I was just a bit concerned after seeing all of the posts about biopsies.

[BlessedMommy]

Yeah, it was a pretty freaky experience. After that, we decided, no more gluten. It really didn't matter what any tests said anyway, I wasn't going to start eating it again.

 

I won't do a gluten challenge to satisfy anybody's diagnostic requirements. No way, no how.

 

It sounds like in the future, celiac testing could be done without eating it at all, through an in vitro gliadin challenge. I hope that becomes mainstream soon!

[124chicksinger]

I am a novice to gluten-free. I was tested both blood and scopes and both were negative, tho I think the GI didn't do enough biopsies of the small intestine. He said I was inflamed from end to end, had diverticulosis and suggested MORE grains, and opined the esophageal inflammation was heartburn/gerd, which I rarely had.   I decided to eliminate gluten, with very good results overall, and also like others have written throughout the forum, different/more symptoms occurred and abated, which for myself I could have easily chalked up to gluten, or explained away (ate bad food, caught a virus, etc.).  

 

If your blood work states you have celiac, you have it.  That is my opinion, and shared by others and in medical print.  At that point, if you want to go have the biopsy, I think that is between a person and his/her doctor.  It advises how much damage is done, and if there are other components going on. like H. Pylori, and can eliminate other diseases, like Chrons, just to name one.

 

In some parts of the world, having an official biopsied diagnosis is somehow financially beneficial as the foods are medically necessary, and also, if one is a student, to have the school somehow comply with the gluten-free diet.  These are issues I have sparsely read about, and I do not know anyone who has needed this, however there may be some posters here who can advise on these two issues, if not other "benefits" of having the biopsy.

 

In the past 10 years, celiac disease has come much more to the forefront. Now, the medical field knows how much more prevalent this is, and people at large are becoming aware.  The food industry has stepped up because the disease is now known to be very widespread.  Strides are made more often in diagnosis and categorizing, and the "criteria" for diagnosis, for some "experts" definitively ends with positive blood work and said experts feel that going further, to know what is already known/diagnosed, is just invasive, expensive, and perhaps risky because of the sedation involved.

 

Were I to have had a positive blood test, I may have stopped there.  The fact is that my blood work results came a day or two before the scopings had already been scheduled to be done.  Frankly, I was having the colonoscopy anyhow, so the upper scoping was a "bonus" because I was having so many intestinal issues.

 

Meanwhile, I've been gluten-free since March 5, 2014.  The constipation and diahhrea are now minimal.  I've lost a few pounds.  I generally feel better tho I have had a few ups and downs, an intestinal flu with fever, and recurring purpura.  While I did not toss out the toaster or pots or utensils, and will now go to the diner and have eggs and potatoes that have likely been cooked on a grill where pancakes may have been cooked earlier, I feel better.  I don't see myself turning back to eating gluten, and most of the time eat my own home-cooked food.

 

Having a biopsy done is between a patient and his/her doctor, and depends on how ill the person is, and what they want to know as far as the internal damage that exists, and other conditions that can be ruled out, or in.  Is there a right or wrong on this? I don't think so.  

[joannw]

All this input is so helpful and confirms my own thoughts!  I hadn't thought about the expense of the gluten-free foods -- but I haven't used many pre-packaged "special" foods, just avoided foods with gluten and experimented with a few recipes.  I am not impressed with the quality of the specially formulated gluten-free foods I have tried so far.

I am going Monday to keep the appointment with the GI, but I plan to ask for regular blood tests rather than the scope-biopsy.  A good friend of mine gave me the perfect test question for him:  "How will an endoscopy and biopsy make my life better?"   I work for a municipality and have excellent health insurance -- sometimes I think they can see that cash cow coming! 

[StephanieL]

You may not think there is a right and a wrong but in reality, there is.  There are diagnostic criteria that SHOULD be followed for a list of reasons.  One the the most important reasons is that for some people, an official dx is the only way they will be compliant. There are also other things (bone density, potential vitamin deficiencies, family member testing) that having a dx can help with.  

 

Once you go off gluten, getting a confirmed dx is VERY difficult.  Many Dr's suggest going gluten-free before exploring all the dx routes they should.  This leads to so much confusion for everyone. 

 

If you plan on having children it is kind of important to know for sure if it's Celiac because you would want to know if they need to be tested as there is genetics involved here as well. And for children, a firm dx i s critical if they will need school accommodations.

[joannw]

Stephanie, you are the first person to present an argument for a confirmed diagnosis!  Since i backed into the positive celiac diagnosis and gluten-free diet because of bone loss and vitamin deficiency, and since children are not in my future, I still think I will forgo the scope-biopsy. The high blood test numbers show celiac disease, the diet has been effective, and I have been completely compliant since February with no real inconvenience.  All I can think of is that the scope would provide a baseline for more scopes, which are invasive and do nothing to better the condition.  If symptoms reappear, I may schedule one with my next regular colonoscopy, just to keep an eye on things, but I am not having any bad symptoms now.  I will continue to monitor the vitamin numbers and bone loss (double whammy from celiac and hyperparathyroidism), of course.  And my scheduled parathyroid surgery may do much to slow the calcium/bone loss!  I guess my feeling is, just because the technology exists to do a procedure doesn't mean the procedure is always necessary.  Any thoughts?

[GFinDC]

Another reason to do the endoscopy would be if you wanted to participate in medical studies.  Medical studies usually accept only biopsy confirmed celiacs.  Most people aren't interested in that but some are.

 

It's best to get the celiac testing done before starting the gluten-free diet.  Doing a gluten challenge after going gluten-free is difficult and painful for many people.  Personally, I don't think it' s great idea to do that.

[124chicksinger]

For people who are surprised by a diagnosis in blood work - hey, it happens - maybe that they have had no symptoms (tho its odd a physician would perform celiac tests without reason) perhaps having a biopsied diagnosis would convince them to be"compliant" with the diet.  Generally tho, hasn't a person been experiencing symptoms, which prompt the blood work in the first place?

 

There are people here on this forum who are confirmed and still want to eat the gluten.  Go figure.

 

I have a negative diagnosis, and but for the now occasional diner food that may get cooked on a cross-contaminated griddle, I'm self-regulated "compliant."  Either the connection is "all in my head" that I feel better, or I am one of the gluten sensitive or gluten intolerant.  I have to admit tho, complying isn't as difficult as I thought it would be.  I don't miss pasta or pizza but of course its a whole lot easier to order a pizza or get takeout than it is to cook a "whole" foods gluten free meal.  I do miss the convenience, I don't miss the intestinal distress.

 

As to the kids, gene testing could answer that.

 

Not everyone needs to get sedated and have invasive procedures.

 

The "experts" are saying if certain criteria is met, the biopsy isn't necessary.  As more information and research is done on gluten, medical opinions are changing.  Apparently, it used to be standard procedure to have 3 biopsies.  Google.

[BlessedMommy]

I think that it all depends on the circumstances.

 

One possible drawback with a biopsy is that sometimes you can get positive bloodwork and a negative biopsy even with someone who is really celiac. (the biopsy can miss the damage) Then sometimes the doctor will send the patient on their gluten eating way based on the negative biopsy.

[notme]

get copies of your blood test.  if it is the correct test to determine celiac and if it is positive, i would say 'slam dunk' - false negatives are common, false positives are not.  it IS a good idea to get a dx but also you need to rule out other things that would require different treatment(s).  they tested me for tons of things.  (i thought i definitely had cancer that was causing me to waste away)  but i was also told to go off gluten prematurely, so my blood test came back negative.  grrrr........  but i had such an amazing response to the diet and doc was afraid to have me to a gluten challenge due to my still severely underweight status.  did the scope without a challenge but the doc could actually see the (25 years worth of) damage.....  :/  it's really a difficult decision, though.  your response to the gluten-free diet is considered one of the deciding factors in diagnosing celiac, btw.  if i had positive bloods & a positive response to the diet i would have not done the scope, probably.  but since i did, now if they want to do another one to compare/make sure everything is healing well, i have a baseline.  

[StephanieL]

  Generally tho, hasn't a person been experiencing symptoms, which prompt the blood work in the first place?

As to the kids, gene testing could answer that.

 

Not everyone needs to get sedated and have invasive procedures.

 

 

 

Many people have no clue the Dr's are testing for Celiac. Many times it will be done when there are vitamin deficiencies, bone density issue or other AI  issues.

 

The gene test doesn't mean you have Celiac so it isn't really useful unless trying to rule OUT Celiac.

 

Does everyone NEED to be sedated, no but MOST do.  

I think that it all depends on the circumstances.

 

One possible drawback with a biopsy is that sometimes you can get positive bloodwork and a negative biopsy even with someone who is really celiac. (the biopsy can miss the damage) Then sometimes the doctor will send the patient on their gluten eating way based on the negative biopsy.

 

The procedure we went through with this picture was to either scope every 6 months  OR go gluten-free and follow tTG's to see if the went down after the genetic test was done which was +.

[BlessedMommy]

Does vitiligo count as an AI issue as far as celiac testing goes? I'm seeking testing for my oldest daughter and she has vitiligo.

[across]

I had a positive DGP IgA blood test (even after being gluten free for six months), and my doctor diagnosed me as NCGS - in spite of the positive blood test and a dramatic reaction to going gluten free and then reintroducing gluten. I'm planning to have the endoscopy because if I have celiac, I want an official diagnosis, and I don't know any other way to get it.

 

So why do I want it? Several reasons --- one of which I've never heard anyone on here mention. I work with a large elderly population and spend many hours a week in nursing homes. I see the kind of care the people there get and don't get. One thing I know for sure is that when a person can't speak for himself or herself, no one in a hospital or nursing home will do anything to accommodate gluten sensitivities if they don't have an official diagnosis in the charts.

 

Sadly, even with a diagnosis, they are sometimes horrible at caring for people properly. I've seen a known diabetic (who had already lost a leg to diabetes) fed white potatoes and apple juice every day -- in spite of the nursing facility being reminded of the person's diabetes. If I'm already sick enough to need hospital or nursing care, I don't want the food they are feeding me to make me sicker. I want a celiac diagnosis in my chart.

 

I have other reasons for wanting to get diagnosed via biopsy, but I've seen others mention all of them before, so I won't repeat them here.

 

If you have a doctor who will diagnose without the biopsy, that's awesome! Unfortunately, mine won't, so I plan to get the biopsy.

[joannw]

I had a positive DGP IgA blood test (even after being gluten free for six months), and my doctor diagnosed me as NCGS - in spite of the positive blood test and a dramatic reaction to going gluten free and then reintroducing gluten. I'm planning to have the endoscopy because if I have celiac, I want an official diagnosis, and I don't know any other way to get it.

So why do I want it? Several reasons --- one of which I've never heard anyone on here mention. I work with a large elderly population and spend many hours a week in nursing homes. I see the kind of care the people there get and don't get. One thing I know for sure is that when a person can't speak for himself or herself, no one in a hospital or nursing home will do anything to accommodate gluten sensitivities if they don't have an official diagnosis in the charts.

Sadly, even with a diagnosis, they are sometimes horrible at caring for people properly. I've seen a known diabetic (who had already lost a leg to diabetes) fed white potatoes and apple juice every day -- in spite of the nursing facility being reminded of the person's diabetes. If I'm already sick enough to need hospital or nursing care, I don't want the food they are feeding me to make me sicker. I want a celiac diagnosis in my chart.

I have other reasons for wanting to get diagnosed via biopsy, but I've seen others mention all of them before, so I won't repeat them here.

If you have a doctor who will diagnose without the biopsy, that's awesome! Unfortunately, mine won't, so I plan to get the biopsy.

Across, that consideration really resonated with me -- my parents just went into assisted living and they don't have a lot of say in their care, even though my mom is knowledgeable and with it. It seems that over a certain age, people automatically discount a person's wishes and experience. The staff mean no harm, but the residents are organized to serve the institution's needs rather than the other way around. I saw the GI doc today and he is going to do a second blood panel first. The option for an endoscopy in the fall is still there, if it seems indicated, but for the moment, I am holding off on that. Everybody's responses have been really helpful to me! Thank you all!

[across]

Across, that consideration really resonated with me -- my parents just went into assisted living and they don't have a lot of say in their care, even though my mom is knowledgeable and with it.  It seems that over a certain age, people automatically discount a person's wishes and experience.  The staff mean no harm, but the residents are organized to serve the institution's needs rather than the other way around. I saw the GI doc today and he is going to do a second blood panel first.  The option for an endoscopy in the fall is still there, if it seems indicated, but for the moment, I am holding off on that.  Everybody's responses have been really helpful to me!  Thank you all! 

What you said about the residents being organized to serve the institution's needs rather than the other way around is quite often true, sadly. 

 

I'm thinking about getting a medical id bracelet with my gluten sensitivity status on it just in case I'm in a car wreck or something and can't speak for myself. We don't often think about those kinds of things unless we see those issues on a regular basis, as I do.

 

I wish you all the best with whatever path you choose, joannw.  There are many factors for each of us to consider, and we each need to do what will best serve our own health needs, and those of our families. In this case, whatever anyone else  thinks about how we approach managing our health doesn't matter one bit! :-)