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Multiple Diagnoses Point To Celiac?

laura1959

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laura1959 Apprentice
laura1959
Posted

In the past month I have been diagnosed with osteoporosis (age 54). I have also been told that my liver enzymes are now slightly elevated.  I recently underwent a colonoscopy and endoscopy due to increases in digestive problems but I have been constipated for so long I have always considered it my normal. Unfortunately, no one was looking for celiac so the small intestine was not viewed or biopsied.  I am always bloated, frequently gassy and I have GERD-- now I know that I have Barrett's Esophagus from that.  I have suffered with chronic fatigue for many years, have eczema, have multiple environmental allergies, headaches (migraine and sinus).  

 

It seems as though all of this has hit a tipping point, because most of these results have just come to my attention within the past three or four weeks.  Now I'm sitting here looking at all of this diverse health stuff and when I put it all together it seems to spell a high probability of celiac disease.  

 

Unfortunately, all this testing is being done by a series of specialists, none of whom seems to know what the others are finding.  I have called my Primary Care doc and set up an appointment with him for July 23 to look at all of this and see if I can convince him to do whatever testing needs to be done to confirm or rule out celiac.  I think it would be important to know if all of this has an underlying cause because the treatments for some of these conditions (osteoporosis vs. GERD, for example) are contradictory and I feel like I am drowning in a sea of new information with nobody working to tie any of it together.  

 

In the meantime, I'm experimenting with gluten-free eating and, frankly, I feel horrible.  Today is the second day of the diet and I am tired and brain fogged to a degree that's pretty extreme, even for me.  Please tell me this is normal at first.  Any advice about how to talk with my doctor about my fears would be helpful.  Thanks. 

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bartfull Rising Star
bartfull
Posted

What you are feeling right now is gluten withdrawal and yes, it is normal. I must tell you though, if you want to be tested you need to keep eating gluten until testing is completed. There are a bunch of different blood tests that you should have, plus the biopsy of the small intestine unless the blood tests are so definitive that your doctor feels comfortable diagnosing you without it.

 

I don't have insurance so I never got tested, but between my family history (celiac runs in families) and my symptoms, I self-diagnosed, went gluten-free, and after two or three weeks of withdrawal, started seeing relief from my symptoms.

laura1959 Apprentice
laura1959
Posted
  • Author

Thank you.  I'm not thrilled about the withdrawal symptoms.  

 

If I can talk my doctor into ordering tests, I'd go off the gluten free diet for a while before I go in for the testing.   How long would be recommended?  If I'm feeling much better by then I could possibly skip it, but it's probably worthwhile to have a diagnosis on file in case I have issues down the road.  

 

Love your avatar.  Been a while since I saw a pretty Adamas :)  

bartfull Rising Star
bartfull
Posted

I think they recommend that you eat gluten for at least three months. :ph34r: Since you already feel crummy with the withdrawal symptoms, you might as well keep eating gluten until your appointment on the 23rd. In the meantime, read as much as you can here. There are plenty of threads where they tell you what blood tests to ask for. And the Newbie 101 thread will help tremendously. It'll explain about the places gluten can hide so you can be prepared. If I were you, I would eat all of the things you know you're going to miss because the gluten-free diet is for life. Although there are a lot of good substitutes, some things can't be duplicated. Enjoy them while you can.

 

So, you must be a guitarist, and you are familiar with Adamas/Ovation guitars. The one in the picture is one I had custom made. It is a baritone and sounds incredible. I also own two other Adamas', four wood Ovations, and seven guitars of other brands. You've heard about the kid in a candy store? Well, I own a guitar store and guitars ARE my candy! :wub:  :lol:

laura1959 Apprentice
laura1959
Posted
  • Author

Yes, it's quite daunting to think that, if this is my problem, I will not be able to eat certain things again.  On the other hand, if it fixes the fatigue that has plagued me my entire life, it will be well worth it.  I'll take your advice and go on an eating binge this weekend.  Seems to me that eating gluten for another 10 days will be a lot easier than having to eat it later for three months.  Kind of a drag because I am feeling a bit better this evening-- not as bloated as I usually am.  

 

Yes, I am a musician, a bass guitarist in fact, but played my very first "bass" notes on an Ovation nylon string guitar (they weren't really bass notes, just playing the bass part.  I fell in love with bass lines and the rest wrote itself.  My ex and I also had a little guitar shop for a while but that was a few years ago.  Nowadays I make my living in more conventional ways!  

 

Thank you for your advice.  I will continue to read here and learn.  

frieze Community Regular
frieze
Posted

Yes, it's quite daunting to think that, if this is my problem, I will not be able to eat certain things again.  On the other hand, if it fixes the fatigue that has plagued me my entire life, it will be well worth it.  I'll take your advice and go on an eating binge this weekend.  Seems to me that eating gluten for another 10 days will be a lot easier than having to eat it later for three months.  Kind of a drag because I am feeling a bit better this evening-- not as bloated as I usually am.  

 

Yes, I am a musician, a bass guitarist in fact, but played my very first "bass" notes on an Ovation nylon string guitar (they weren't really bass notes, just playing the bass part.  I fell in love with bass lines and the rest wrote itself.  My ex and I also had a little guitar shop for a while but that was a few years ago.  Nowadays I make my living in more conventional ways!  

 

Thank you for your advice.  I will continue to read here and learn.  

If you have a good relationship with doc, perhaps you could call and get him/her to order the complete celiac panel prior to the appt...good luck

GottaSki Mentor
GottaSki
Posted

If you have a good relationship with doc, perhaps you could call and get him/her to order the complete celiac panel prior to the appt...good luck

 

I agree with this.  You certainly have plenty of symptoms that are associated with Celiac Disease.

 

Call your doctor - ask to have a complete celiac antibody panel run just as soon as possible. 

 

How long have you been eating gluten-free?  It is important to eat at least a slice or two of gluten containing bread each day until the blood tests are run as the antibodies measured in these tests are produced in response to gluten ingestion -- remove gluten and these numbers return to normal fairly quickly. 

 

If the blood is not conclusive for celiac disease and you want a diagnosis you will likely need another endoscopy with multiple samples of the small intestine -- preferably preformed by a GI with celiac disease experience. 

 

Should the tests come back strongly positive -- it will be time to decide if you remove gluten based on the tests or continue eating it until a endoscopy has been complete.

 

After ALL testing you choose to complete is done -- then remove ALL gluten for at least three months (six is better).  Non Celiac Gluten Sensitivity does not have any test other than elimination of gluten.  NCGS can present with many of the same symptoms of Celiac Disease - without measurable antibodies.

 

Here is the complete panel -- many doctors run only one screening test -- this is not enough -- the entire panel is essential:

 

Total Serum IgA

tTG - both IgA and IgG

EMA - IgA

DGP - IgA and IgG

AGA - both IgA and IgG -- This is the Anti-Gliadin Antibody test -- the DGP listed above is the newer and more sensitive of the Gliadin based tests.  So if your doctor is fussing at all at the number of tests -- this one is not essential - in my opinion.

 

Malabsorption of nutrients is another strong clue of Celiac Disease -- so if you haven't had them run recently between all the specialties -- add:

 

CBC

CMP

B1, B2, B6, B12, D, K, Iron, Ferritin, Copper and Zinc

 

Welcome to the forum!

 

Good Luck to you :)

 

Let us know how it goes....

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laura1959 Apprentice
laura1959
Posted
  • Author

Thanks; I can't reach my doctor right now because he's on vacation.  July 23 was the earliest appointment I could get with him due to his vacation schedule.  

 

Today is my fifth day gluten-free.  I'm still feeling quite foggy; would five days off of gluten be enough to mess up the test results if I decided to go back to eating normally until after I speak with him?  I'm on the fence about moving forward toward asking for testing or just continuing this course to see how I end up feeling.  Mainly I just want to go back to bed and sleep for three hours, but it's the middle of my workday so that's out of the question!

GottaSki Mentor
GottaSki
Posted

If you decide to pursue testing....start eating gluten as soon as possible. 

 

The antibody tests are not perfect -- all I can suggest is keep eating gluten until they are complete.

 

Given your other diagnoses -- I think it would be wise to be tested.  If you are Celiac and you don't get tested -- it can be very difficult to return to eating gluten for testing later should you change your mind or not improve quickly upon removing gluten -- some improve right away...some take weeks, some months and sadly some of us take years to improve.

laura1959 Apprentice
laura1959
Posted
  • Author

All right, I think you have convinced me that I should eat normally and then beg for the test when I see him.  It will be interesting to see how eating normally affects me after the five days.  Thank you very much.  This site has a wealth of knowledge.  

GottaSki Mentor
GottaSki
Posted

Try to jot down how you have been feeling these past few days gluten-free and if any changes occur adding it back in -- I don't think it has been long enough for real data....but all symptom changes should be noted.

 

Oh...and if adding gluten back -- no need to overdo it until testing...just a slice or two of gluten containing bread is what is suggested by most celiac centers.

 

If you haven't read it yet...take a look at the "Newbie 101" thread....I'm not on a computer with that link...but if you can't find it post here and I'll add the link for you.

 

Take care :)

 

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

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