Are All Gastro Dr's Inept?

[Littllemel]

I am 3 weeks gluten free because of an accident from my Gastro Dr.

After an Endoscopy for severe reflux, he was explaining to me that there was damage to my lower intestine, that the ridges were worn down and this is usually indicative of Celiac and that he took some biopsies and sent them off. He said my reflux is benign and more of a "functional" problem because there was no reflux damage. (almost like it was in my head) And then he put me on Amitriptyline for spastic nerves. He also said the reflux has nothing to do with the lower intestine damage and they were unrelated.

With this news I decided to start the diet on my own since all this Dr wanted to do was calm my nerves and call my problem benign. Anyway 3 weeks into it and my reflux is half the problem it used to be. Prior to the diet, I had to sleep upright, had constant burning in my throat, sinuses and lungs from reflux. It was so severe it was making my life hell and I could barely work and live day to day. I was on 2 Nexium per day, including Sulcralfate 4x day and Bentyl and that wasn't even bringing me relief. This thing would keep me up all night constantly waking me up so I was a mess all day.

Today I am down to 1 Nexium a day and I don't have reflux at night anymore. I am working and living at a tolerable level and I am sure this will only get better with time. Last week I got the call from my Dr's office that the Celiac test was negative. So I tried to go off the diet 3 different times and had reactions to wheat each time so I stayed on it.

Today I had my follow up appointment with my Gastro. I told him of my recovery and that I thought the Gluten was causing it. He again said that it was great that my problem was resolving but the two were likely not related. I showed him my internet printouts of medically sited articles that link the two together but he answered that with "I can write about aliens living on my kidneys and post it on the internet but that doesn't mean that it's true"

I had other articles to show him too about my Hypoglycemia, Sjorgren's Syndrome and Early Menopause and that they were all linked to gluten intolerance and absorption issues. Not to mention the countless stories I have read on this forum about similar problems related to gluten. He just shrugged it off with another "you can't believe everything you read and don't get ahead of yourself", patted me on the back and told me to take care.

I'm so pissed at the level of ignorance here. Am I overreacting?

I can't just switch Dr's either since I am a military spouse and we have Tricare, so I basically have to go where they tell me. And even if I get a second opinion I would have to start the process all over again. No thank you!!

[Gemini]

No...you are not overreacting at all and I can completely identify with your experience, as many others on this forum will most likely chime in on! I could diagnose Celiac Disease better than most GI docs out there, without the endoscopy.

Rather pathetic, isn't it?

Always, always trust your inner voice with regards to Celiac because the GI doc population will try and keep you sick. There are a few great docs out there who get it but the VAST majority behave much in the manner yours did. I was patted on the head and told to go and "talk to someone" because there was nothing wrong with my stomach and my problems must be from anxiety and stress. You know, the crap they always do to women. I had pain so bad after eating, it felt like I was trying to digest broken glass, I was always underweight to the point many thought I had an eating disorder, I had just about every single symptom associated with full blown Celiac yet I was OK? I admit, this was a long time ago when I began to look for answers but come on!

Stay strictly gluten-free and forget what this turkey said to you. I don't even use a GI at all and now rarely see a doctor because I am healthy. I was eventually diagnosed but I figured it out and requested testing as I was down to 96 pounds by then.....

Welcome to our world and be thankful you have something YOU can control and not these knuckleheads!

[mushroom]

If you were overreacting, there wouldn't be a lot of reason for many of our posters to be here. Unfortunately, this seems to be the last port of call before you check in your sanity when dealing with the medical profession. If it makes sense to you, then it's wrong to them. If it's bleeedingly obvious, then it's obscure to them; if you are slowly dying of your symptoms, to them it is nothing that a little nexium, a pat on the head and a talk to a shrink won't fix. And if you have the temerity to become an informed patient, you are naive and will believe anything you read. Welcome, you are among friends who understand.

[UKGail]

Yup, been there, done that, and got the T-shirt. Trust your reactions to changes in your diet. BTW - are you still taking amiltriptyline? That stuff is horrible, and doctors hand it out like candy. It made me worse rather than better. I wouldn't touch it again with a bargepole.

[Littllemel]

Glad to hear I am not overreacting. I was only on the Amitriptyline for 1 day, it made my dry mouth worse so I stopped it. Although the only thing my diet has not cleared up is my dry mouth, it seems to be getting worse in the past couple of days and I don't think I added any new foods/drugs in that time. I wanted to discuss it with the Dr today but the whole conversation went south when he told me to not get ahead of myself. I have also had new side pain (knot) in the duodenum area that I wanted to talk to him about but he just said pains will come and go and that my reflux could even return someday. I am having my GP run tests for Sjogrens just in case. But I at least thought the diet would make it better. Not sure what is going on there. Any thoughts?

[UKGail]

Glad to hear you dumped the amitriptyline along with the dodgy Gastro. I wouldn't worry too much just yet about testing for Sjogrens. Your body is going to go through many changes as you recover from the damage caused by gluten. They dry mouth may be one of them. Or you may be unlucky and be stuck with it. Some people do have Sjogrens and celiac too, but I don't think sjogrens is a condition where you need to be a tearing hurry for a diagnosis.

I was tested for Sjogrens plus a bunch of other autoimmune disorders before going gluten free. All the tests, including for celiac came back negative, but I went gluten free anyway because of a strong family history of celiac, and my symptoms fit right in. Anyway, my dry eyes improved a fair bit after going gluten free, as did all the other possible autoimmune symptoms, to the point where the rheumatologist discharged me.

The reflux went away completely, unless I get glutened, then it returns for just a couple of days.

[Gemini]

Glad to hear I am not overreacting. I was only on the Amitriptyline for 1 day, it made my dry mouth worse so I stopped it. Although the only thing my diet has not cleared up is my dry mouth, it seems to be getting worse in the past couple of days and I don't think I added any new foods/drugs in that time. I wanted to discuss it with the Dr today but the whole conversation went south when he told me to not get ahead of myself. I have also had new side pain (knot) in the duodenum area that I wanted to talk to him about but he just said pains will come and go and that my reflux could even return someday. I am having my GP run tests for Sjogrens just in case. But I at least thought the diet would make it better. Not sure what is going on there. Any thoughts?

I have Sjogren's Syndrome and have a few questions for you. Are you diagnosed with it or are your symptoms making you believe you do? Like Celiac Disease, the antibody testing for Sjogren's, called SS-A and SS-B, does not always show positive, even if you have the disease. It's the way things go with autoimmune diseases. I tested VERY positive for Sjogren's but have all the major symptoms also. Are your eyes really dry? Do you have trouble swallowing bread without drinking something to get it down your throat? These are the hallmarks of Sjogren's.

I went until the age of 46 before I got the Celiac diagnosis but by then, a lot of damage had been done. I had dry mouth and tooth problems (major) my whole life yet no one picked up on any of it. I have severe dry eye and mouth and, although it got somewhat better, it did not go away just from the gluten free diet. If you trip for another autoimmune disease, it will not go away. You can manage it better but it will not go away. Many people think the gluten-free diet is a cure all for other autoimmune diseases but it is not. If your mouth is that dry, then you probably have Sjogren's. I never take meds because they make the dry mouth worse. I have butted heads with many a doctor because they like to put people on meds to keep them coming back but I have always refused and they will never get it because they don't suffer from Sjogren's. I didn't need them anyway....it's all nonsense. That is their answer to everything.....NOT!

It takes a while to heal from Celiac and you will have symptoms and other issues pop up during this time so don't sweat it. Just ask questions because most of the people on here are the true experts. I'm sorry you have had this experience with your doctor but join the club. BTW...I have never noticed that food will make Sjogren's worse, except continued ingestion of gluten. That does not mean you are ingesting any, either. Stay away from salty stuff, for obvious reasons. That is the killer for me. I eat very little salty foods.

Hang in there!

[Littllemel]

I am not diagnosed with Sjogrens yet but I took blood tests today and I only have the dry mouth, I don't think I have dry eye. My dry mouth is pretty bad though. I can't eat food without water. I wake up with my tongue totally dry and almost painful. I have to spray it throughout the night with Stoppers4. It takes like a gallon of water throughout the day for it to calm down. The past 2 days have been really bad which makes me think it's getting worse. Maybe I was glutened? I have been itchy all over but sometimes I think that is all in my head.

[Takala]

There are online doctor rating forums where you can report your experiences with incompetent or malicious doctors, plus your state will have a medical licensing board, plus your insurance carrier may not be pleased that they are reimbursing a dangerously incompetent doctor. I had a malicious neurologist lie to me to my face in an office visit about test results which showed c- spine and brain damage, which she apparently did not know I had managed to obtain (after her office kept canceling appointments.) At the time I was rather shocked that this person was doing this, but I have a pretty good poker face, and realized this was a cya action because here I had gone a year and she had kept putting off looking at the areas where previous physicians had told me I had real problems. Very arrogant and nasty, insisted I was making it up, and tried to treat me as if I were a really stupid person just drug-seeking for attention - for neurological problems. Refused to admit this was celiac related. Yeah, sure. . The horrible thing is that this is one of only 2 neuros in the area. As long as they keep getting paid and getting referrals, without complaint, nothing will change and they will continue to steal from you via your insurance and copays, and keep sickening and even killing people.

The equally rip - off artist rheumatologists I have gone to around here in the past, trying to get my auto immune diseases at least verified in this state, also flippantly will tell me I don't have the Sjogren's, (which goes along with the arthritis I was diagnosed with over 30 years ago). Well, tough **** and **** on them, because my dentist and eye doctor certainly recognize the physical symptoms, which are very obvious to them. These guys will just run a blood test and not really look at you nor read any medical history you brought with you. The blood tests are not completely accurate for those antibodies. They (incompetent docs) are sort of scary, and this is why I am very soured on HMOs - do NOT ever volunteer to go into an HMO system of insurance if you have auto immune problems, they will do their utmost to weed you out by neglect, denial of treatment, and other horrible feats of dishonesty.

As for easing your symptoms, keep sticking with your gluten free diet, as anything that calms down the inflammation and auto immune reaction will help. Some people have good luck on a low or even no - grain diet such as SCD or Paleo, or a variation on that. Open Original Shared Link

[melikamaui]

I don't think you're overreacting at all. And I haven't met a Gastro yet who knew what the hell they were doing. My GP is better than any other doctor I've seen. I'm very thankful to have her.

[love2travel]

I agree with the others that you certainly are not overreacting. Just a quick kudos to my gastro who was very good in all respects. Very knowledgable and aware. That is, apparently, quite unusual.

LOVE the cat BTW! I could just squish him.

[Gemini]

I am not diagnosed with Sjogrens yet but I took blood tests today and I only have the dry mouth, I don't think I have dry eye. My dry mouth is pretty bad though. I can't eat food without water. I wake up with my tongue totally dry and almost painful. I have to spray it throughout the night with Stoppers4. It takes like a gallon of water throughout the day for it to calm down. The past 2 days have been really bad which makes me think it's getting worse. Maybe I was glutened? I have been itchy all over but sometimes I think that is all in my head.

Yup...you sound like me. I would say you have Sjogren's. I would suggest trying Biotene mouthwash.

It's for dry mouth and has a nice light minty flavor. Use it whenever you feel the need and especially before bed. It does help but you will still wake up with a dry mouth. 7-8 hours is a long time for a mouthwash to keep working.

There will be times when it's worse and that can be caused by salty foods or allergy season or just not getting enough fluids. Try chewing gum because that REALLY helps and promotes saliva production. Make sure it's sugar free because dry mouth will promote tooth decay. The Biotene has enzymes that are normally found in saliva to help protect against decay.

No matter what the doc says, if you can't eat without fluids, you have Sjogren's. It is manageable but a pain in the butt sometimes.

[ravenwoodglass]

Glad you are starting to feel better. My old gastro was clueless and misdiagnosed me and wanted me on even more meds than I was already on. My new gastro when going through my records stated he always tells folks that appear to have celiac related problems to try the diet strictly no matter what the test results because he is aware that false negatives on testing are common.

As far as the 'you can't trust stuff off the internet' mindset goes whenever you bring info to a doctor make sure it is from a peer reviewed site like the NIH or Lancet since they can't pooh pooh those. My psychiatrist was clueless until I brought him a few articles showing the link between depression, anxiety and other neuro features and celiac. He told me on the next visit that he was going to have any of his patients with IBS tested for celiac and thanked me for the articles. So some doctors can really learn from us if they want to.

[Littllemel]

Glad to hear there are some doctors out there that know what they are doing. I just wish I had one of them. This thing is hard enough to go through by yourself let alone without a good doctor. I hope my GP comes through and pick up the slack of the Gastro.

[Bubba's Mom]

About 20-30% of us test negative for Celiac by blood test, but have the disease. A good GI should know that!

I went through years of mis-diagnosis and seeing various Dr.s. I was told that I had stress, and to just eat Tums, and offered various anti-depressants/anxiety meds.

As a result, once I was finally DXed I was in very bad shape.

I also went in with print outs from the internet, etc. The Dr.s I saw didn't like that. When I went to one GI asking if I could have a bacterial overgrowth he asked me if "Dr. Google" told me to ask about it. It's infuriating!

If he had patted me on the head..or back I think I might have become violent with him? Grrrr...

You can take yourself gluten-free. You don't need a Dr.s permission. Your Primary care Dr. can order vitamin/mineral blood tests, etc.

A while after going gluten-free I went off the acid reducing meds completly. I hope you can too!

[Littllemel]

How long after were you able to stop acid meds? I am always so scared it will come back that is how bad it was.

[UKGail]

I stopped them immediately and suffered the symptoms for about a fortnight before it started to really improve.

If it recurs due to a glutening, it is not as bad as it was before, and I take Zantac for a couple of days rather than omeprazole as I find this works better for me.

I don't think omeprazole is great for celiacs as (please someone correct me I am wrong on this, or can explain it better) as it works by encouraging the stomach to empty its contents before the stomach acids and enzymes have had time to have had their full effect on it. It is therefore probably putting additional digestive pressure on the small intestine which is usually the main site of gluten-related damage.

Zantac is simply an anti-histamine, and works on damping down the over-excited histamine response which seems to go hand in hand with active celiac symptoms. However, I have seen comments that anti-histamines aren't good for sjogrens sufferers as it can apparently exacerbate sjogren's dry mouth and eye symptoms. Gemini will know more about this than I do.

[maximoo]

Have you had your blood sugar tested? You are saying your mouth is dry--is it due to thirst? well if I were you I'd just get it chkd There are products for dry mouth-- Biotene is one.

also eat some bananas It helps with the reflux a little as bananas are akaline--opposite of acidic.Good Luck!

[Bubba's Mom]

How long after were you able to stop acid meds? I am always so scared it will come back that is how bad it was.

I went off the acid meds about 6mos after going gluten-free. I could have done it much sooner..but didn't know I could. I stopped them because my gallbladder wasn't functioning properly and thought going off might help. I asked my new PCP if it was safe..and was told to try it and see what happened. It helped my GB pain and function.

I was told that many of us are put on acid reducers when we actually have low acid. The symptoms are the same from low acid or high acid. A digestive enzyme is a better treatment.

With Celiac disease, usually once you stop eating gluten the reflux settles down. That was one of my first symptoms to improve.

[Littllemel]

I have been on Nexium for my reflux not Zantac. I tried a couple of times to stop recently but I am still getting heartburn and reflux is still in my lungs as I have the "cough" after eating. Hopefully it will pass in a few more weeks and I can ween off the Nexium.

I have had my blood sugar checked, it was giving me problems with hypoglycemia for the first 2 weeks of the diet but even that has calmed down. I was having trouble waking in the morning and shaking uncontrollably. This never happened before going gluten free. I would have to sip juice every morning until the tremors would calm and then I could get out of bed. For the past 4 days though it has stopped and I can get out of bed normally. My Gp checked for diabetes but I am good.

My current symptoms are the reflux, dry mouth and body itching(assuming that is part of sjogrens) since I don't get a rash from it. The itchiness freaks me out though because it makes me think I am coming in contact with wheat but I guess its just a kind of dry skin. Even thought it doesn't feel like dry skin. I have checked all my toiletry labels too and nothing has wheat in it.

[Cujy]

Your not over reacting at all!!! Here where I live in Ontario Canada I was having really bad symptoms for the last two months (14 yrs total very sporadically) and it landed me in emerg three times. I went to emerg with the excrutiating pain and blood in stool along with a chest pain and side and back pain...the only thing that worked was IV morphine, well the last time I was told I was lying about the blood in my stool (not sure why I would do that?!?) and to go home and deal with it...then I was diagnosed, now with kidney problems, its all on the celiac, never mind that my urine contains buckets of white sediment (reminiscent of CLR through my coffee maker) and they refuse to do an ultrasound. 3 different docs all refused to do the ultrasound! Still having the pain, and will eventually find a doc that cares....Had the scope and colonoscopy and blood test that confirmed after years of being told its "stress" too. Anti anxiety meds (that I used only for sleeping pills) are now gone since they don't do anything anyways. I havn't been on the diet long enough to notice a difference, in fact I have new worrying symptoms, but hoping they too will fade. In general docs here HATE it when you google stuff, but we must stay informed, and although its not all true, alot of good can come of it. I will always Google stuff...I have a medically fragile child, and have done alot of research on his behalf.

Stick with your gut, and do what it takes, we will win this!!!!!!!!

[frieze]

Your not over reacting at all!!! Here where I live in Ontario Canada I was having really bad symptoms for the last two months (14 yrs total very sporadically) and it landed me in emerg three times. I went to emerg with the excrutiating pain and blood in stool along with a chest pain and side and back pain...the only thing that worked was IV morphine, well the last time I was told I was lying about the blood in my stool (not sure why I would do that?!?) and to go home and deal with it...then I was diagnosed, now with kidney problems, its all on the celiac, never mind that my urine contains buckets of white sediment (reminiscent of CLR through my coffee maker) and they refuse to do an ultrasound. 3 different docs all refused to do the ultrasound! Still having the pain, and will eventually find a doc that cares....Had the scope and colonoscopy and blood test that confirmed after years of being told its "stress" too. Anti anxiety meds (that I used only for sleeping pills) are now gone since they don't do anything anyways. I havn't been on the diet long enough to notice a difference, in fact I have new worrying symptoms, but hoping they too will fade. In general docs here HATE it when you google stuff, but we must stay informed, and although its not all true, alot of good can come of it. I will always Google stuff...I have a medically fragile child, and have done alot of research on his behalf.

Stick with your gut, and do what it takes, we will win this!!!!!!!!

Have they at least done a unrine analysis to determine what the white stuff is???

[SandraLAVixen]

I have 5 GI Drs working on my case, seriously FIVE! and it's going to be six next week.

I think your experience is a bit less common in my experience (my opinion), some of my GI drs do not like each other (they literally act like the shallow drs you see on TV medical dramas).

But others are okay to give 2nd, 3rd, 4th opinions... some come up with new ideas.

I think you might want to try a different GI doctor.