Two years after my initial celiac diagnosis, I was still feeling like poop. My gastro ran a few extra tests and found nothing else wrong. Then he decided to re-scope me. Not to confirm that I actually had celiac disease. I did. But to see how my intestines were healing.
But what if you go to a new doc and he insists on re-testing you for celiac disease because he doubts the first tests were accurate.
We’ve all sadly had our share of doctor horror stories. Here’s another one to add to the list from a fellow celiac.
I am still having issues after being diagnosed with celiac disease two years ago and going gluten free. I know that it can take longer to get better and decided to see another gastroenterologist for a second opinion. I left the Doctors office with my head spinning. I brought all of my blood test results for the last year so he could see all my levels. He walked in the room and asked why I was there.
[Dude note: This drives me batty. In what other industry is this accepted? Can you imagine walking into a client’s office without first knowing why you are there?]
I told him because of my celiac and he said that my antibodies were perfect so I must be gluten free. I said yes and was ready to talk about everything. He never asked me my history or how I was currently feeling. The first thing he decided to do was another scope. I tried to show him the pictures of my first scope showing the damage to my intestines but he didn’t want to see it. I told him the the biopsies showed celiac and I had a genetic test that showed I have the gene. He told me he wanted to redo the gene test since I had it done two years ago. ???? I know that your genes don’t change. The tests costs $650 and he asked if I would pay for it. My insurance paid for it the first time.
I didn’t have a copy of the gene results and he wanted to see it. The office contacted my doctor and they sent a copy. He called me in his office and said that I only had a 2 for the gene and only had a moderate chance of developing the disease. He only sees people with a 7 or 8 (high chance of developing celiac). Since I had biopsies come back positive then I probably had celiac. ????
He then told me to “gluten up” for a week before my scope so they could send the samples to a different lab. I told him that gluten makes me sick. He told me to think about it. ????????
I left there and contacted a celiac dietitian that I see and she was floored by what he said and how he acted. He made me feel like it was all in my head. I went through years of being sick and told it was all in my head. I was relieved when I was diagnosed because I could finally let everyone know I wasn’t making it up.
The next day I called the office and cancelled everything and told them I won’t be back. They asked why and I told them at I won’t make myself sick for him and damage my intestines so he could be convinced. My husband called our insurance company to make sure they didn’t approve anything from his office and filed a complaint. The person that he talked to has a daughter with celiac and she couldn’t believe it.
In a way I am glad that I saw Dr. Nightmare because I will never let a doctor convince me it is all in my head.
Thanks for listening.
“It’s all in your head” is a phrase I have heard over and over again from my fellow celiacs. Makes me sad.
Look…there are tons of great docs out there. But there are also those with the god complex; who make you feel like they’re doing you a favor by seeing them; and “how dare you question my decisions?”
When I was a lad and dealt with a bit of acne (good times), I had a dermatologist who insisted on doing an injection in each pimple to get rid of them (at $10/injection). I said that I didn’t care about the ones I already had, I want to prevent future ones. He said he would no longer treat me then. Nice.
So if a doc wants to do a second endoscopy to see how you are healing, and you trust his/her instincts, I’m down with that. But when he’s convinced you may not have celiac, even though you’ve already been diagnosed, and he starts suggesting more test, you may want to que$tion where his motivation$ lie.
Ah yes, the “it’s all in your head” scenario. I got this from doctors, family, friends, teachers, pastors, etc for 20 years. So, they can all eat their words now that I’ve been diagnosed.
I’ve been through something similar. The new, doubting doctor was actually a neurologist. I mentioned my celiac diagnosis. He told me I “couldn’t know” if I really had celiac. What the…?? He insisted that I had to be retested. I told him there was no way in hell I was going to make myself that sick just to confirm to his satisfaction what had already been diagnosed long before. He said he didn’t think I actually had to be eating gluten to have accurate testing!
I later ordered a copy of my medical records from that visit (it was at a large, respected teaching hospital). I discovered that he’d put in my medical record that I had “self-diagnosed” celiac three years before. I had been medically diagnosed 12 years before, which is what I’d told the idiot. He’d tuned out everything I’d said and put that I was a self-diagnosing food faddist in my medical record! Unreal. I’m not even sure what the motivation was there, since he is paid a wage from the hospital and new testing wouldn’t financially benefit him. These damn doctors are so ignorant and disbelieving of celiac, they seem to think we make this up.
I also love how flippantly they suggest, like that doctor did to the letter writer, to just “gluten up,” as if it were nothing for us to do that. That alone speaks volumes how little they understand what we experience.
Argh. No really…ARGH!
I hate to say this, but I think we’re missing part of the story here. There are doctors who have seen the results of inaccurate testing over the years, where children were diagnosed with celiac by a false positive test.
That said, the doctor should have asked about when he was last tested – it sounds like recently and fairly often, so that should have nixed that line of questioning.
Next point – if you’ve got a good antibody result (as the letter writer mentions), a gastro is probably the worst person to go to, because they specialize in getting celiacs to the good antibody result, not on the whole of celiac disease. You’d be better off going to a primary care doctor for management, because they can order other tests and use other diagnostic tools to see if its a side effect of celiac (like Dermatitis Herpetiformis, low iron/vitamin D/other vitamins absorption, etc.)
And I would totally ignored the genetic results unless he had specialized training and experience in dealing with that sort of genetic counseling. Most general MDs aren’t qualified to analyze highly specialized genetic results.
Prior to the last 5 yrs (50 yrs of life), I only saw my dentist every 3 yrs whether I needed to or not and my nurse practioner every few years only for an upper respiratory issue if I couldn’t shake the crud w/o some pharmaceutical assistance.
During the last 5 yrs, I’ve routinely needed my dentist, nurse practioner, dermatologist, gastroenterologist, geneticist, endocrinologist and retina surgeons all because of CD, DH, 3 types of cancer (skin, esophageal & colon) and 5 retina surgeries – all directly related to gluten ingestion and while I was doing my best to never ingest gluten again. I haven’t even had any upper respiratory issue since I started avoiding gluten like the plague.
I say all of that to say you may easily need more than 1 doctor during the Dx process and follow up care. Thankfully my medical professionals have all worked very well together with me during the last 5 yrs. My GI chuckled when he told me during my 2014 follow up visit that, after my official CD & DH DXs in 2013, that “protocol” required that I go through a gluten challenge just to make sure since it’s a lifetime condition, which he prefaced with “I already know your answer.” Yes, he did – absolutely not! I won’t ever need any more proof after the last 5 yrs of gluteneous hell. I just left my retina surgeon this morning after follow up for my 5th retina surgery. I had to stop all eating out again and revert to preparing all of my meals at home after some CC events. Even my salad staple of Starkist Albacore White Tuna packed in Water (on front of can) now includes “vegetable broth (flour)” in the ingredients (on back of can), which we learned the hard way after my DH started rearing its ugly head again.
So I conjured up 13 quarts of vegetable soup this weekend, including our very own GFjules’ scrumptious lentil soup – such is my life now as a cook – I’m eating/enjoying only very healthy food, I’m still on the green side of the grass, I can still see with both eyes and no chemo is necessary! As the Dude says, “Thanks – I’m good – no gluten ever needed here again!”
Exactly. Thanks Hap.
This makes me as sick as a loaf of Italian bread would. I would personally like to subject “quacktors” like this to a scope and see how THEY like an unnecessary test. Makes my blood boil. I am so happy this person told them to shove it. And that they also filed a complaint.
Good job on sticking up for yourself. I got the blood test in 2006 because I just had a strong feeling that gluten might be the problem. Doc said it was negative. I also had had a couple decades long history of anemia and anxiety and arthritis and stomach stuff. Docs tried to put me on Paxil over the years. Also went to a neurologist, for numbness. He gave me an MRI which was negative and so he suggested that I get a hobby. Also saw a chiropractor and spent a lot of money, for joint pain. About six years later, a physical therapist suggested a bone scan which turned up osteoporosis. The bone person tried to put me on the bone meds but I wouldn’t. She also did run tests including celiac panel and it was positive. When I discussed results with her, or maybe it was the nutritionist I visited after the endoscopy confirming celiac, I mentioned the negative celiac test six years prior and she looked it up and said…that long ago test WASN’T negative. It was positive, with no follow up. Until the second test and diagnosis in 2013. I try not to think about all this misdiagnosis too much because really what is the use now, just telling as yet another cautionary tale. Have been gf for 3 years now, a second endoscopy showed villi healed up. Joint pain and neuropathy much improved, anemia some better, second bone scan 2 years later showed no improvement but hoping it will over time. Intestinal issues come and go. There’s a gallstone and have had laser surgery for damaged retina. So, yeah, stick to your guns, I know all these stories help people with the learning curve, and thanks Dude for running your blog!
Oh yeah forgot to add there was also psoriasis for decades, all the symptoms mentioned above, and heart palpitations and the blood tests that showed anemia etc were not recognized as celiac by primary care docs. Of course I didn’t know about the misread celiac test and was too ignorant myself. And another positive about being scrupulously GF, is that I don’t get colds. Coworkers all sneezing and hacking and coughing around me and I don’t get the crud. So I am hoping the autoimmune system will grab a clue from the immune system! 🙂
My pleasure!
I don’t know what symptoms you are having…but I will share my experience. I was hyperthyroid in 2006. Finally got to a good endocrinologist in 2008–and started feeling better. Then…suddenly not. All my endocrine panels looked good. My endo suggested screening me for CD. (Smart lady!) I was diagnosed in January 2010. I have been gluten free since…with the exception of a couple of “glutenings” a year. It happens. For a while everything was much better. Energy up, etc. BUT…after about two years I started having issues again. Muscle pain…peripheral neuropathy… muscle fatigue. My ferritin levels were low, but within normal parameters. My endocrine doc ordered rheumatic panels…only thing that came back positive was my ANA. (Which we assumed was the CD.)
Cut to August 2010. I had a weird round of ischemic colitis i…which my gastro (the person who confirmed my diagnosis of CD) wrote off as a combination of too much fun at the beach (GF margaritas), dehydration, and overuse of ibuprofen. (See beach margaritas.) So I quit taking IB and kept myself hydrated. And the weird symptoms continued…and I acquired a neurologist…and a diagnosis of idiopathic small fiber neuropathy…and then in early December 2015 I had another round of ischemic colitis that landed me in the ER. Colonoscopy and biopsy showed definitive markers for IC. MRI angiogram showed no *physical* anomalies that would cause IC. (Blockages, plaque, narrow arteries, etc.) GI doc’s antennae went up…sent me to a new rheumatologist…and general consensus is I *probably* have some form of vasculitis. My team of doctors and I are now pursuing this…looks promising. The next month will tell.
The POINT of this tome…it is entirely possible to have multiple layers of auto-immune garbage going on…and just taking care of the CD doesn’t necessarily fix the others. So don’t fail to look at other potential causes for feeling yucky!
The best thing about all of this? ALL of my doctors have always believed me…we just needed another weird trigger event to pull it all together. So that’s all good. Hope you get answers soonest.
Sound advice…
This story happened to me-almost the same conversation! I was there three years gluten free after positive biopsy and still having pain and bowel problems with so many foods. The last straw was eating a bowl of popcorn and having pain and swelling for three days as if I had been glutened. I made an appointment with a different gastroenterologist; the first wasn’t a big help. The new doctor didn’t listen to why I was there, then cut me off to say “I don’t think you have Celiac disease,” that I had Irritable Bowel Syndrome, start the FODMAPS diet, take peppermint capsules, do yoga, eat gluten for a month then we’ll do another endoscopy. I said gluten makes me sick for days and my gene test and biopsy were positive. He also wanted another expensive blood test and my husband said she doesn’t eat gluten, it will be negative. I told him my naturopath was treating me for SIBO (small intestinal bacterial overgrowth). He said he studied with an expert in Arizona and that he didn’t think I had SIBO. I told him my breath test was positive and showed him the results. I cried at the appointment from frustration. Seriously… eye roll… It is two years later and I am still a little angry. And no, I sadly don’t eat popcorn or any grains anymore.
OK, so this isn’t coeliac related (at least, not directly).
I live in the UK. Whatever anyone the other side of the pond has heard, the NHS is very good, particularly if you are ill. The only thing is that for things that are painful but not likely to kill you, you might be told to have a paracetamol, and if it persists then you can go on a waiting list. This doesn’t mean they are negligent (I hurt my ankle a while ago, and it was xrayed within 4 hours, and there was no charge to me) – just that, having established that there isn’t a serious issue, they are inclined to put you at a lower priority than cancer patients and hear attacks, etc.
So, what to do if you hurt your back? Well, you can visit a private osteopath or chiropractor. These are available on the NHS, and therefore free of charge, but if it hurts, you might not want to wait.
I’ve visited two. Both were very effective.
Number one charged £70 for the first appointment, and £50 for every follow-up. He also had an expensive line in supplements, and recommended I visit monthly for a year.
More recently, he wasn’t available when I needed him, so I tried number two. £50 for the first visit, £34 thereafter. After three visits I was fully mobile again, so he suggested I should only need to go again if I stopped improving before I felt fully recovered.
Guess which one I would recommend to my friends and family?
yikes. this doctor sounds like a nightmare.
As a woman in my thirties with a laundry list of chronic illnesses I have certainly also seen more than my fair share of doctors like this on my journey.
I just wanted to point out that there ARE situations where a second biopsy is warranted. Namely if Refractory Celiac disease is suspected. BUT….this wouldn’t require going back to eating gluten. on the contrary the whole point is to see if the diet has been effective and you have healed since your last scope (antibody tests don’t typically remain raised in refractory Celiac).
Even if the point is to re-confirm your diagnosis going back on gluten would not be required, as again, the point would be to see if the gluten free diet has been effective, and if you still have the same amount of damage Celiac would be ruled out.
I was positive on biopsy, antibody tests and genetic tests, and I still find I have to bring all test results with me to any new doctor or they assume I am self-diagnosed. Even then I frequently get told any extra-intestinal symptoms couldn’t possibly be caused by Celiac disease. It really is time docs got up to date education on this disease.
to the writer of the letter, good on you for sticking up for yourself and your health!
I live in a large metropolitan area that has 2 large GI groups. I made the mistake of going to “A” first. The “Dr” I saw there told me flat-out that (even though I had a sneaking suspicion that I had Celiac and was there requesting a Celiac panel because my own family Doc wouldn’t do one) he would NOT ****ever**** diagnose me with Celiac Sprue…get this…..BECAUSE HE CANNOT TREAT CELIAC SPRUE! (This was in 2012).
Needless to say, I wound up going to GI group “B” (which also happens to be a leading INTERNATIONAL research ‘consortium’ if you will) and was diagnosed with Celiac.
I agree that this was a bad experience- but I’m a RN, and have worked in a specialist area before- and the fact is that we HAVE to ask you what you’re here for- it’s good practice. You may have a referral from your primary doctor, but we want to know it in your words. We need to make sure that we understand your concerns fully. If we just go by the info given by a referee, you may not get the care you need. Maybe the doc wa ps a poor historian, maybe they condensed it and left out salient points.
Asking an open ended question like that allows you to explain it all.
Hope this helps you feel better about that!
Point well taken Mandy…thanks.
“The next day I called the office and cancelled everything and told them I won’t be back. They asked why and I told them at I won’t make myself sick for him and damage my intestines so he could be convinced.”
Go you!!