Is The Endoscopy Even Worth It?

[kabons]

I'm 20, a student, and I've been seing a naturopath since September. Long story short, I went off gluten initially to treat my endometriosis and figured out in the process that I react strongly to gluten. Realizing that explained a few years of symptoms, this past year being the worst:

 

- stomach cramping/bloating/gas/nausea/loss of appetite

- acid reflux

- horrible joint pain

- crazy unexplained weight loss (I think I've lost about 35ish lbs now)

- exhaustion 

- numbness/tingling in my toes

- headaches

- bad canker sores

- low iron and B12 (as I figured out a few months ago)

- muscle cramps and spasms

- brain fog and concentration issues

etc, etc.

 

My naturopath eventually decided it was pretty probable I had celiac, especially since I responded to a gluten-free diet. So I went back on gluten for 2 weeks (which ended up being completely brutal) and got tested. The blood results came back this week. The tissue transglutaminase IgA was negative, the deamidated gliadin IgG was positive, (66.7... reference range <12, whatever that means).

 

So, now she's going to get me to go find a GI to get the endoscopy.... but I'm really not feeling it. The thought of having to go back on gluten again (now I've been off it a month again) is really sickening. I don't think I can physically do it. What do I do? Do I really need a diagnosis? 

[fran641]

For me the endoscope with biopsies gave my definite diagnosis of celiac. You might ask if you have to be gluten-free for that test since the damage to villi happens over time. At least that's my understanding. Good luck with whatever you decide.

[nvsmom]

Welcome to the board.

 

How long had you been gluten-free before you went back on gluten for two weeks for your blood tests?  I ask because tTG IgA levels are slower to respond to changes in diet than the DGP IgA levels.  In fact, doctors will often retest the DGP to check for compliance with the gluten-free diet because it more closely reflects levels of gluten in the diet.  If you had been gluten-free for many weeks or months, there is a chance that your TTG IgA would have been higher if you had been on gluten for the full required gluten challenge time needed for accurate testing (2-3 months rather than 2 weeks).  If you were gluten-free for a few months, the two week gluten challenge may not have been long enough to produce accurate results.

 

All that being said, the DGP IgA is about 95% specif for celiac disease.  That means that 95% of positives are caused by celiac disease, and your positive is quite positive at 5 times over the normal limit.  Since you have many celiac disease symptoms, and felt better on the gluten-free, my guess is that you have celiac disease.

See this for info on tests: Open Original Shared Link

 

The endoscopy will need a 2-4 week gluten challenge (eating gluten).  If you want confirmation of the disease, and extra incentive to stay gluten-free for life, it is a good idea to have it done.  If you need a doctor to sign off on a formal diagnosis for food accommodations at school, you might need to get it done. Not all celiacs have the biopsy done though.  I skipped it because I was sure the blood tests results were caused by celiac disease, and I was committed to going gluten-free, and I've never looked back.  You don't need the biopsy to go gluten-free and get well, but go for it if it will help you stay gluten-free.  If you need school accommodations, talk to the GI about if you really need to have the endoscopy done.  Not everyone can make it through a gluten challenge without getting very ill - the doctors should understand that.

 

Best wishes.  

[sunny2012]

You have to read this article before you decide to go thru an endoscopy. It is not the really safe procedure that we all thought. The risks of death from anti bio-tic resistant bacteria is very real.

 

If you feel better on the gluten free diet and then get that sick eating it again after a short time, sounds to me like Celiac. You are already positive thru the blood tests which was supposed to replace the ever present expensive endoscopy expect in rare cases.

 

The effects of gluten exposure last loner than you might realize. It took me nearly 5 years to actually notice how much better I could concentrate. 

[kareng]

You have to read this article before you decide to go thru an endoscopy. It is not the really safe procedure that we all thought. The risks of death from anti bio-tic resistant bacteria is very real.

 

If you feel better on the gluten free diet and then get that sick eating it again after a short time, sounds to me like Celiac. You are already positive thru the blood tests which was supposed to replace the ever present expensive endoscopy expect in rare cases.

 

The effects of gluten exposure last loner than you might realize. It took me nearly 5 years to actually notice how much better I could concentrate.

Once again, those are an entirely different type of scope and procedure.

[MomBTired]

Sadly you sound so much like my son, he's turning 20. I would get the scope just in case it's something else and to confirm it is celiac. When it does come back positive, also find yourself a good neuromuscular doctor.

[ravenwoodglass]

The test that you were positive in is specific to celiac. IMHO the choice to have a endo done is really up to you. NVSMom has mentioned some of the reasons you may want to challenge and get it done. It would require a gluten challenge though. Have you talked to your regular MD about this issue and showed them the test results? It would be good to have their input to help you make the decision. 

Some doctors will give a formal diagnosis based on reduction in blood antibody levels on the diet combined with symptom relief on the diet and return of symptoms if we accidently get glutened. You may want to talk to your doctor to see if that is something that could be done if you are unable to do the challenge needed for a biopsy.

[ravenwoodglass]

Sadly you sound so much like my son, he's turning 20. I would get the scope just in case it's something else and to confirm it is celiac. When it does come back positive, also find yourself a good neuromuscular doctor.

May I ask why? Even if someone has severe neurological impact from celiac there isn't much they can do except rule out other issues. The nervous system can take time to heal and I don't think there is anything that can be done to speed it up other than supplement vitamin deficiencies and stay very clean with the diet. I did find a physical therapist to be helpful normalizing my gait and balance though. If your son has issues with walking and movement you may want to ask for a referral to one. 

[MomBTired]

Took forever for them to figure out what my son has. After a nerve biopsy rarely done not to mention another test people don't generally get but between the two, showed his nerves in his colon were dead and the biopsy showed autonomic small fiber neuropathy. Apparently, if you have autoimmune diseases, pretty good chance you have this form of neuropathy, especially if you get diagnosed with fibro. His neuromuscular doctor told me that anyone with Celiac that goes into his office with all his symptoms, he diagnoses without the biopsy, my son was just his proof to peds to why it's not necessary. Thing is, the nerve diseases most likely came before the celiac, which has a few scratching their heads.

[MomBTired]

Here's a decent article about it, My son is an overachiever and has the rarer form

 

Open Original Shared Link

[squirmingitch]

kabons, here is another reason to get a dyed in the wool dx from a GP or GI. You are 20, likely you will have kids some day & since celiac is a genetic disease it's more than possible one or more of your kids could have it. If you have an official dx then it's MUCH easier to get pediatric docs to take the disease seriously & test your kids every couple years b/c of the genetic connection. Your kids, if they end up with celiac, will need an official dx in order to make sure their schools &/or the military take their dietary needs seriously.

Now, if you can get a doc to dx you based in your blood panel then GREAT! That will work. if not, then you will need to consider how this will affect your kids if you don't have an official dx.

[murphy203]

Devil's advocate: Pre-existing condition = uninsurable. If the ACA is overturned.

I have a genetic, progressive neuromuscular disease, proven genetically, Hopkins geneticists advised us against having our kids tested.

[Gemini]

Devil's advocate: Pre-existing condition = uninsurable. If the ACA is overturned.

I have a genetic, progressive neuromuscular disease, proven genetically, Hopkins geneticists advised us against having our kids tested.

As much as I think our government needs some serious overhauling, I do not think they will allow insurers, no matter who is behind the policies, to discriminate in future

because everyone has a pre-existing condition.  Some more serious than others but almost everyone out there has a health issue which can be classified as such.  If they want everyone insured, they cannot allow this to happen.

 

They do need to find tune that because althought the ACA claims they do not discriminate, there's a big catch that no one seems to want to talk about.  They can legally charge you up to 3X the rate of a healthy, young person.  Those of us with pre-existing conditions will end up with policies you will not be able to afford and you cannot get subsidies unless your income is on the lower side. 

 

I agree that the less your insurance carrier knows about your medical problems, the better.  I chose to pay out of pocket for my gene testing and blood work 10 years ago because of this and a good thing because I have a double Celiac gene and I failed all the testing by huge numbers.