Celiac Based On Symptoms Alone?

[scrcdawn]

I will try and make this the cliff note version.

 

I was a runner, active, healthy eater, then last December I started waking up with very stiff fingers in the morning.  Within a few months I had pain everywhere, joints, muscle, my skin was tender to the touch, and I had days I could barely drive because of pain and tenderness in my hands ( ever drive with your wrists?) I also work in a hospital and work 12 hour shifts, and I needed to find some kind of answer.  Oh and I had horrible PMS and insomnia to just add to the fun.  For a month I lived on rolaids for reflux.  I got to the point I could barely roll out of bed. After eating sprouted wheat bread I looked like I was going to give birth.

 

I thought RA , was tested and everything negative.  Lead to diagnosis of Fibromyalgia.  After wallowing in misery for another month I knew I had to do something, I had a few days where I would just lay on the couch and just have no interest in anything.

 

So, being type A, I researched my butt off and decided to try gluten free, I needed my life back.  Within a week, symptoms started going away.  After 2 weeks, I reintroduced gluten to see if it was a coincidence.  Within 48 hours it all came back.  I have now been gluten free for 3 weeks, and feel amazing.  ALL symptoms gone, except a mild twinge here and there.

 

My doc now believes it was it may have been celiac all along.  She says blood tests are not completely reliable and even if they came back negative, I would not ever go back eating gluten again.  I am on blood thinners for life, and I would not have an endoscopy because I am always the one in a million person who has an adverse outcome with things.

 

So, long story short, I am comfortable eating this way ( I felt poisoned before) but for some reason still have this need to have something concrete ( it is a health care worker thing).  Has anyone been diagnosed just on symptoms without testing further?

 

 

[appletree729]

Your experience sounds just like my poor sister who eventually ended up being diagnosed with chronic Lyme disease.  Have you had a Lyme test (the western blot version)?

 

As far as celiac goes, some newer studies have indicated that a biopsy is not always necessary to get a diagnosis, but I doubt many doctors know this.  I'd get some comprehensive blood work done by a GI doc that is very familiar with celiac and knows which tests to order and see if you can get some answers that way?  

 

Here is the info about diagnosis without biopsy...

 

https://www.celiac.com/articles/23296/1/Can-Celiac-Disease-be-Diagnosed-without-Intestinal-Biopsy/Page1.html

 

hopefully some more knowledgeable people can chime in here for you!  I'm new here too and just trying to get answers myself...

[cyclinglady]

Yes, my husband has not been formally tested and has been gluten free for 12 years.  He went off gluten at the recommendation of both his GP and my allergist.  He struggled with the diet for the first year, but he has been faithful ever since.  Of course, there have been accidental glutenings.

 

I was just diagnosed in March of this year.  I had no symptoms other than Hashimoto's thyroiditis (since 1997) and anemia (both iron and one genetic).  Just a routine visit for a colonoscopy and the gastro insisted on a celiac disease blood panel.  I'm a runner too but just fractured a vertebrae this summer.    So, you might want to get a bone density test.    I'm not  running, cycling or skating until I can build up my bones. Just walking my dog and swimming!

 

Good luck and welcome to the forum! 

 

Here's a link to some newbie information on this forum:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

And About.com (author Jane Anderson) has several good articles about how to make your kitchen gluten free.

[Lock]

Welcome!  I think you nailed it. You probably understand how the healthcare system works with diagnosis codes. Insurance reimbursements, disability claims, decisions about risk vs benefit for treatments and drugs, etc. They want black and white, nothing vague.

 

Everything needs to be scientific and if it is not, they fake it as best they can, so they can declare something on paper. Fibromyalgia is the classic example. We know you are sick with something, but we cannot identify a virus or bacteria that is the definite cause so we come up with a list of things to help us decide whether or not you fall into this definition. ("Diagnostic criteria"). Most chronic or autoimmune diseases have this sort of diagnostic criteria. If you meet x number out of y things, you are officially diagnosed.

 

You've probably read about the intestinal biopsy being the "gold standard" for diagnosing Celiac Disease. There are two other ways. One way is positive Dermatitis Herpetiformis. The other is to meet 3 of 4 criteria, being positive blood tests, positive biopsy for certain changes but might not be the complete classic flattening, positive response to a gluten-free diet and having HLA-DQ2 or DQ8 genes. (As far as I know, I'm not a doctor and I don't know if all doctors use this new diagnostic method, it is more updated than requiring the completely flattened villi.)

 

Right now you feel the solution of being gluten free is working, so why get a definite diagnosis? One thing I worry about is unplanned hospital stays, and even worse, old age care. Right now the Meals on Wheels program my mother uses does not even have a gluten free option. Institutional food for the elderly seems to be suffering budget cuts. Gluten free eating can be expensive, so later in your life if you are dependent on a facility of some kind to feed you, you might need doctor's orders to qualify for the gluten-free diet.

 

To answer your question, no you can not be diagnosed (at least in the official sense) on symptoms alone. That meets only 1 of the 4 criteria. (Your symptoms went away when you went off gluten.)  If you are already eating gluten free, you may not be able to get a positive on either the blood test or the biopsy. The doctor is right, the blood tests are not reliable, and there are many different ones, some more sensitive, some more specific, but in general, the celiac tests are very specific, meaning if it is positive, it is reliable, if it is negative, it could be a false negative.

 

Yes, I too feel the need to have something concrete. You may not realize why you want it, but subconsciously maybe you've already wondered what would happen if you were to be hospitalized for an accident for example, and lost control of your food. YES, you want something in your "chart". But it does not have to be confirmed Celiac. Talk to your doctor about what she is putting in your record. It should be something like "gluten sensitivity" either celiac or non-celiac. At this point they have not proven you one way or the other. But talk to your doctor about making sure whatever concrete diagnostic code she is using will get you qualified for gluten free food.

 

This may vary depending on where you live. I don't know if there are places and people who take "Celiac" more seriously than "Gluten Sensitivity", but they shouldn't. The non-celiac version can make you just as sick. The firm diagnosis for Celiac would mean you have completely flattened villi of the small intestine. Even if you do not have that, you may in the future. Your sensitivity may be a precursor to the intestinal damage. If you want more answers without the risk of an endoscopy, you can get the gene test, but if positive will still only give you 2 out of 4.

 

But the important thing is what your doctor puts in your record to ensure that any future doctor, or the insurance companies, or institutions, will comply with your gluten free diet. AND if you are like me, will give you something authoritative to tell your family, if you think any of them might have gluten issues but you have trouble getting them to believe your "theories".

 

I am in the same position as you are. I do not want a biopsy because I have had horrible reactions to most procedures and surgeries. It is not worth the risk for me at this point. But I am very aware that the longer I go the less chance I have of getting a positive biopsy if I don't go for it - I cannot consider doing a gluten challenge, I think it would kill me.

 

This is a decision point many if not most of us have had to go through - ideally we would have had blood testing and biopsy BEFORE going gluten free, but for many of us, we figured out for ourselves what was going on and tried the gluten free diet just to see, and were blown away by the results.

 

It will be nice when the doctors get on board and start thinking of celiac before the patient does, and order the testing before we get the idea. That is how it is supposed to work with doctors, right? You go to them with a problem and they come up with a few possible answers and test them out. Right now I think everyone with a "fibromyalgia" diagnosis should be tested for Celiac. Neurological manifestations of gluten sensitivity are very common and fibromyalgia is more and more understood as a CNS/nerve fiber disorder.

 

EDIT: Good links, posters, you got them in while I was writing my tome.

[w8in4dave]

You do have to be eating Gluten to get the blood test done. I would follow up on the above statements. But if you feel better not eating Gluten. And have no wants to get the blood test done. Then I'd stay off of Gluten and have the other tests done. Good luck!! 

[scrcdawn]

Thanks for all the info.

 

My doctor did test me for Lymes, all thyroid levels, and complete CBC etc.  I had 5 tubes of blood work done, including the entire RA profile and xrays which just revealed osteoarthritis in my middle left finger ( no I do not give the finger a lot..)

It just amazes me how much better I feel in just 3 weeks, and going back to eating gluten just for testing would probably knock me out my behind, I could barely walk some days, a far cry from running a 10k.

 

I am going back in a month, so I may push for a genetic test, I am an only child and have no children, so I am not sure if that would be worth doing.

[bartfull]

My doctor agrees that I have celiac based just on genetics (my Mom had it) and my response to the diet. I never got tested because I don't have insurance. My doctor knows that and he has been absolutely wonderful.

[1desperateladysaved]

Yes, I got diagnosed based on my genetic test which was 2 DQ2 and 2 DQ8 and that was as positive as one can get.  I also took those test results to the MD 3 weeks post gluten.  I presented with a belly looking 5 months pregnant.  I told her about my response to the gluten free diet. I had promised myself not to eat gluten ever again on purpose.   She said that I had celiac disease and should never eat gluten again. 

 

Since, I always seemed to harbor doubts about actually having celiac, I have been collecting symptoms that line up since.

   Food intolerances

   Nutrient levels low.  Nutrient levels rose after diet changes.

   Long term Anemia problems

   The enamel disappeared off my teeth in my late teens.

   Tested and shown to need digestive enzymes.

   Mal-absorption

      Eczema

   Teeth problems in spite of hygiene habits

 

subjective improvements

   My energy is up

   My brain fog is gone.

   I am only tired rarely, or at bedtime.

   30 years of symptoms and still transitioning after 18+ months.

[ravenwoodglass]

 

I am going back in a month, so I may push for a genetic test, I am an only child and have no children, so I am not sure if that would be worth doing.

Welcome to the board.

If you do choose to do the genetic test keep in mind that there are diagnosed celiacs that don't have DQ2 or DQ8. There are not a lot of us but we are out there.

It sounds like you  have a good doctor who is going to give you an 'official' diagnosis based on the resolution of your symptoms on the diet. Even if the doc won't it seems your body is giving you the answer as to whether it wants to be gluten free or not.