Update: GI said “celiac”, says endoscopy “unnecessary”. Do celiacs need the proof?

[JenniK]

Hi, i had my GI appt recently, and need advice on whether to do the endoscopy or not. The full details are below, but here is the short issue. After many years of symptoms, which completely resolved when gluten-free, then completely returned during a challenge, i saw the GI. After reading my chart and listening, he immediately said, “you have celiac.” He had zero uncertainty, said he was completely confident, and was not at all surprised because he said it is much more common than people realize. My celiac panel blood tests were taken after only a few days on gluten after 2.5 years gluten-free (see below). They were in negative range, but my general inflammation marker was already High. I expected the GI to repeat the tests since that’s why i had continued eating gluten for 4 weeks. He said, “no need to torture yourself with that. It’s clear gluten is the issue.” Then i asked if I should have the endoscopy to have some proof on my chart. He said he would be happy to do the endo, but it wouldn’t change anything; the treatment was the same, and it was going to be expensive. He said he would write in my chart “Suspected Celiac”, and if I decided i wanted to go through with the endo, he could then put “Celiac” if found. He said if I didn’t have celiac, I clearly at least have NCGS, but that was the last he mentioned of that, and kept calling me Celiac instead. I asked why, and he said because of the mouth sores, the arthritis. (And the probable DH rash, which he saw after he had made up his mind.) 

i am thankful that he believed me, and that i didn’t need to go through every available test to prove anything, or talk him into not thinking i am a hypochondriac, BUT it almost seems too simple, and I just wonder: Do i need the endoscopy for some reason in the future? Does it help a celiac to have it in a chart or is saying, “i was told by a GI that i have celiac” enough?

Symptom History below if interested.

history= Two decades of  what was called ISBm with chronic diarrhea. Fatigue, bloat, belly weight gain despite dieting was contributed to being a mother. Eventually led to joint pain, especially in my hands in morning, were suspected to be RA. I even had a low positive rheumatoid factor blood test, which the rheumatologist said was either a False positive or the beginning to that factor showing in my blood and would get worse. I also had a unexplained acne like rash for months to years (DH) which was Basically written off by a dermatologist. Also had shingles twice. That was all a few years ago. 
 

No advice from doctors but took myself gluten-free. Diarrhea immediately improved, over course of few months all arthritis disappeared as did the DH rash. Was well while i stayed gluten-free for over two years, EXCEPT for the strange reoccurrence of Shingles two more times and periodic flares of nerve pain. 
 

Recently, in order to see if i had healed my gut from another condition that was not gluten related, i did a 4 week challenge. Oddly, instead of diarrhea, I got constipation. Less than a week of wheat/ gluten, i had a whole mouthful of regular cankers sores, and strange tiny rash like sores under tongue. I showed my GP doctor who agreed it was immune response, and did a blood test that day- celiac panel and inflammation- although i told her it had only been a few days. She said yes, but my body was clearly already responding to something and she wanted to see if she could catch it in a blood test. She also got me a GI appt.  In the meantime, (next three weeks) all my arthritis came back, my body swelled up like a pregnant woman, the DH rash started coming back. My vision got blurry, my belly ached all the time.... i knew i had either Celiac and NCGS before i got to the GI visit.

[Scott Adams]

There are pros and cons to an official diagnosis that everyone should consider. Once you are diagnosed you will be faced with higher life, and possibly health, insurance rates, for the rest of your life. Life insurance could also be harder to get.

The pros to getting diagnosed is that you can get follow up testing and care that your insurance would likely cover, however, in the real world doctors don't often do much follow up on it unless you ask for it specifically.

Technically speaking you should have been eating a slice of wheat bread a day for at least 6 weeks before the blood test, but for the endoscope this is only at least 2 weeks.

To me it sounds, at the very least, like you have NCGS. If your symptoms go away on a gluten-free diet, and you don't seem to have a big issue with being on this diet, do you really need the official diagnosis? Also, have you considered getting the genetic screening done? This would at least tell you whether or not you have the genetic markers for celiac disease, but it would still not rule out gluten sensitivity if you did not have them.

[JenniK]

Interesting point about the health and life insurance rates. Good to know. At this point, i am six days into being gluten-free again after the challenge, and feeling better every day, so i think I will just go with the suspected diagnosis and be happy with that. 
 

I would like the genetic testing. I don’t remember why the doctor didn’t push harder for that, bc i remember discussing genes and my sons with him.

[CMCM]

For a long time I was convinced I needed a positive blood test (both tests I've had at different times were  negative) and possibly a biopsy to learn positively whether or not it was celiac.  My recent reading on this subject has led me to the conclusion that it doesn't matter.  I like having had the gene test so I know for sure that I have a celiac and a GS gene and I know what that entails.  I know that being strictly gluten free makes my health so much better and I no longer have any desire to eat gluten again regardless of whether it's celiac or GS.  So I'm finally in a place where I've resolved the issue in the best way possible.  Don't take as long as I did to reach this conclusion!

You can no longer eat gluten, it appears.  You're fortunate to have found a doctor that seems fairly knowledgeable about celiac disease, and that's somewhat unusual.  I'd say take his advice about the endoscopy.  You might find the gene test would be interesting as a final piece of the puzzle, but beyond that, what would be gained from an invasive procedure like an endoscopy?  You still must eliminate gluten in the end.

Edited April 6, 2021 by CMCM

[JenniK]

6 hours ago, CMCM said:

You can no longer eat gluten, it appears.  You're fortunate to have found a doctor that seems fairly knowledgeable about celiac disease, and that's somewhat unusual.  I'd say take his advice about the endoscopy.  You might find the gene test would be interesting as a final piece of the puzzle, but beyond that, what would be gained from an invasive procedure like an endoscopy?  You still must eliminate gluten in the end.

I would like the genetic testing. I want to try the at home ones since it is easier and actually cheaper than getting a doctor to order it somewhere. Which one do you all recommend? Most of the ones i have seen are testing for Iga, etc, but that is not what i need at this point, is it? If i am a week back gluten-free after a 5 week challenge, would those show anything? I wish i had ordered one for right before i ended my challenge, but i thought the GI would do the tests. He said they are enormously expensive though and doubted insurance would cover it.

[JD-New to Celiac]

I had a similar situation and thanks to one or two contributors on this blog, I opted to continue to stay off gluten and not do a biopsy. It was actually my PCP that diagnosed me with celiac based on blood tests alone. I have yet to have the genetic testing done but from what I understand you can be gluten free and get this done at any time. In the past I used Request a Test and did not have any challenges. You choose what test you want online and you have an option of then choosing a local lab that will draw the blood. Request a Test will do the genetic celiac for $300-$350. You had better luck with your GI than I did. I was referred to my GI following my "diagnosis of celiac" by my PCP (who by the way told me to go off gluten). When I arrived to the GI three weeks later he said you can't diagnose celiac without a biopsy and told me to go back on gluten. I was so sick just prior to my PCP diagnosis and had lost 40 pounds (down to 145 lbs for a six foot male), that I told him I was not going to do that. He was most disagreeable following that and wrote in his exam report that I was diagnosing myself and following my own treatment. He basically refused to help me any further and referred me back to my PCP. Anyway, I did the follow up ttp iga blood test and my counts dramatically dropped after staying gluten free for about six months. They are still not where they should be but I am much better now and have been able to gain about 15 lbs back. My thanks to those that supported my decision including Scott Adams. Scott also sent me the info regarding the new standard in the UK for diagnosing celiac. They no longer require a biopsy if you fall in line with three criteria, which I did for two of the three.

[CMCM]

13 hours ago, JenniK said:

I would like the genetic testing. I want to try the at home ones since it is easier and actually cheaper than getting a doctor to order it somewhere. Which one do you all recommend? Most of the ones i have seen are testing for Iga, etc, but that is not what i need at this point, is it? If i am a week back gluten-free after a 5 week challenge, would those show anything? I wish i had ordered one for right before i ended my challenge, but i thought the GI would do the tests. He said they are enormously expensive though and doubted insurance would cover it.

I ordered a gene test from Enterolab.  More recently, I ordered a blood panel from imaware.com (link from this site, I think).  They sent it quickly, and when I took the test  (finger prick, blood drops into a tube that you send back), I was about 8 days without gluten, although prior to taking the test I'd actually not had much if any for a couple of weeks before that so I'm wasn't eating much gluten.  The imaware company said my score might be lower due to the lag time without gluten.  My blood test didn't have high numbers, although the ttG was a few tenths below the cutoff, but for the most part, basically a negative test.  I don't know how much that had to do with my low gluten consumption.  I decided to risk wasting my money on the test "just to see".  They had a special when I ordered...it was $89 or some such. The gene test is more expensive, but was well worth it to me.  Of course, insurance would never cover that.  

Basically, at this point I feel I know what I need to know.  I have two predisposing genes, and know that from the gene test.  I have a boatload of symptoms that go away when I don't eat gluten.  That's enough for me.

Edited April 7, 2021 by CMCM

[JenniK]

I’m trying to decide between enterolab and 23andme.  Both have their pros re: the other results that come with the genetic ones. 23andme has a whole list of other genetic predispositions, and it would be interesting to know my ancestry. Does knowing all those other medical predispositions lead to a constant feeling of waiting for something to go wrong though? 
 

With the enterolab food sensitivity test, I found reading elsewhere that people who did that found out they were sensitive to so many more foods than they suspected— like everything that was tested for! Is the test overly sensitive? It is hard enough to cut out gluten (and also corn for me). I’m not sure i want to find out that i am sensitive to almost everything else too.

Opinions?