Is endoscopy worth the long wait?

[kelzz]

Hi all, my physician did a blood test for celiac because of my high liver enzymes.  The TTG IGA test was above high normal, and the TTG IGG test was negative.  I have some symptoms, including a rash on my hands that seems like dh.  I was referred to a Gastro clinic but the first appointment I could get is 9 weeks from now, and the appointment is only with a nurse practitioner.  The wait for a doctor is longer.  They told me I could not get the endoscopy until then.  

My question is, is it worth it to wait and get the endoscopy?  I would much rather stop eating gluten now so that I can feel better!  My understanding is that because of the blood test, if I don't have celiac I at least have gluten sensitivity.  So what is the advantage of waiting and doing the endoscopy?  2 more months seems like a long time to be sick, especially because of the high liver enzymes.

Thanks!

[cyclinglady]

Only you can make that decision, but here is some advice from experts:

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GI cancellations do occur.  Perhaps you can get an earlier appointment.  That has happened to others on then forum.  

I wish you well.  

 

 

[Gemini]

Did they do a complete Celiac panel or just the tTg?  If you had the complete panel and had more positives other than just the tTg, then that would be a diagnosis without the biopsy. The tTg plus a positive EMA is a slam dunk for Celiac.  Otherwise, it will be harder to have a definitive diagnosis.  Bear in mind that you could still have a negative biopsy even with positive tTg and elevated liver enzymes.  The biopsy can miss damage if it is patchy so doing the biopsy is not always going to give you the answers you want either.  They really should not wait this long to do a biopsy.  It's a joke to ask people to make themselves sick for a long time in order to get testing done. 

[Kit Kellison]

Call a dermatologist and ask if they are familiar with dh biopsies. You don't need an endoscopy if you have a dhdiagnosis.

Also, why not ask go to a different place for your endoscopy? As long as the doctor has written an order, you can take it a

[Jmg]

13 hours ago, kelzz said:

 My question is, is it worth it to wait and get the endoscopy?  I would much rather stop eating gluten now so that I can feel better!  My understanding is that because of the blood test, if I don't have celiac I at least have gluten sensitivity.  So what is the advantage of waiting and doing the endoscopy?  2 more months seems like a long time to be sick, especially because of the high liver enzymes.

Thanks!

As CyclingLady says above it's ultimately a decision only you can make. I went through a gluten challenge and ended up with a negative biopsy, but I don't regret going through with it, even though I felt crappy during it and I already knew that once concluded I'd be off gluten simply based on it's effects on me. 

Although the gluten-free diet is the only treatment for Coeliac if you get a positive diagnosis then you have some medical validation for your diet choice. That could be helpful if you're ever tempted to slip up? Also helpful perhaps with other people or instiutions, say if you're ever in hospital to make sure you get gluten-free food?

You get to know exactly what, if any, damage has been done to your intestines. That could impact on your diet choices, but also will ensure your DR's keep an eye on you for related conditions. Plus they may find other things. I found out I have a hiatus hernia. 

Good luck whatever you choose!

[Kit Kellison]

TTG accuracy isn't good enough, that's why a biopsy may shed more light. I would insist on an EMA blood test.

It's important to know that in people with DH, the impact on the bowel may be less than for celiac without DH. Damage may be less easy to find via biopsy. Ask that the # of biopsies taken be at least 6 to increase your odds

Also, you could really put the celiac issue to bed if you don't have celiac genes

Although these thoughts aren't addressing your question narrowly, you don't have to choose either to wait on biopsy or just go off gluten. There are other sensible options.

But yes, there are definitely benefits to taking the trouble to be diagnosed

1. Dietary compliance is much higher when patients have a diagnosis.

2. It's vitally important information for your family if there is celiac disease in the gene pool.

3. There is a lot of medical follow up that would need to be done to repair and protect your health if you have celiac disease.

4. Celiac disease leaves you vulnerable to many other conditions that will need looking out for from now on.

5. Medical personnel and everyone else will take your dietary issues more seriously if you have a celiac disease dx.

[kelzz]

Thanks so much  for your responses!  I am very new to this and just starting my research obviously.  My general physician is the one that ordered the blood tests, and I think she only did those 2.  She also told me to just start a gluten free diet and that is was not necessary to pursue any more testing.  This really confused me, as it is potentially a very serious illness!

I asked for an endoscopy and a referral to a GI doctor.  She wrote the referral, but indicated that the GI doctor would have to order the endoscopy.  Does this sound right to you guys?  It would obviously be faster if she could just order the endoscopy.

For now, I will plan to get on the phone to the dermatologist and the GI clinic and ask for a sooner appointment.  It sounds like a diagnosis would be worth it, so I am not sure why my doctor didn't put me in that direction.

[cyclinglady]

I bet your insurance requires a GI to order an endoscopy (that's how my insurance/provider works).  Some of our members our in Canada or Great Britain.  Their wait times (NHS) can be pretty long (up to a year) for the GI consult.  Those folks often go gluten free and then have to go back on gluten for several weeks prior to the endoscopy.  Let me tell you, once off gluten and you experience healing, you'll never want to go back.   I would get the referral and then check in every few days for a cancellation.  In the meantime, keep eating gluten (as advised by EVERY single celiac researcher and specialist).  This is your chance to say goodbye to wheat, rye and barley.  

I waited seven weeks for my endoscopy due to work issues.    By the time I had the procedure, I was done, done, done with gluten. Funny thing was that anemia was my main symptom.  I guess since my hubby had been gluten free for 12 years, I was gluten light.  After a seven week binge (literally), my gut was hurting! 

Why didn't your GP advise you properly?  Maybe she was asleep during the "less than an hour" lecture on celiac disease.  Maybe her professor discussed classic symptoms that appear in small children.  Who knows?  What bothers me is that she didn't take the time to research what she does not know.  My neighbor is an ER doc.  He says he consults "Dr. Google" all the time.  It's pretty impossible to remember every possible diagnosis.  With an internet search and all his years of training and practice it works.  Your doctor guessed and guessed wrong.  What else is she wrong about?  

Your GI will be able to order the complete celiac panel, so I would ask for that for extra confirmation.  But I think the endoscopy is the way to go.  You can definitely rule out other diseases besides celiac.  Remember, you can have more than one issue going on.  

Take care!