Why Do I Care If My Doctor Discounts My Experience

[newgirl11]

I like so many am very frustrated. Except for this board I feel very alone. I have had a severe all over body blistering rash since February. Dermatologist said yea that looks bad, worse I have ever seen not sure what it is. I finaly requested biopsy for DH. He said that can't be what it is, that diet is too hard to follow. Please. I feel like I am dying here, I'll flolow the diet. He did not perform the bipsy correctly and of course it came back negative. Fine, I have been off gluten for about a month. Amazingly, I stopped getting new blisters. Unless I am accidently exposed to gluten ( as when I took an over the counter with gluten) I have gotten no new blisters. My Migraines are gone and my severe lower back pain is gone. I have more energy etc.

So My aunt and cousins have celiac and several uncle likely do too. I told my GP I wanted blood test. Came back negative. Had an endoscopy for another reason and the GI did a biopsy for celiac given my family history and rash. Talked to my GP today and she does not have biopsy results yet but she says if the Celiac panels are negative it is not a gluten reaction. So I know I can heal myself and that I have discovered on my own the source of my misery, so why am I so upset to be condesended to and discounted by my doctor. Just needing to vent and knew that you folks would get this. Thanks

[Coleslawcat]

I like so many am very frustrated. Except for this board I feel very alone. I have had a severe all over body blistering rash since February. Dermatologist said yea that looks bad, worse I have ever seen not sure what it is. I finaly requested biopsy for DH. He said that can't be what it is, that diet is too hard to follow. Please. I feel like I am dying here, I'll flolow the diet. He did not perform the bipsy correctly and of course it came back negative. Fine, I have been off gluten for about a month. Amazingly, I stopped getting new blisters. Unless I am accidently exposed to gluten ( as when I took an over the counter with gluten) I have gotten no new blisters. My Migraines are gone and my severe lower back pain is gone. I have more energy etc.

So My aunt and cousins have celiac and several uncle likely do too. I told my GP I wanted blood test. Came back negative. Had an endoscopy for another reason and the GI did a biopsy for celiac given my family history and rash. Talked to my GP today and she does not have biopsy results yet but she says if the Celiac panels are negative it is not a gluten reaction. So I know I can heal myself and that I have discovered on my own the source of my misery, so why am I so upset to be condesended to and discounted by my doctor. Just needing to vent and knew that you folks would get this. Thanks

Were you already off the gluten when you did the bloodwork and biopsy? I know you said only a month off, but it could affect the results. You need to be consuming gluten to get accurate results on those tests. I know you must be very frustrated, but you know you feel better when you don't eat gluten, so no matter what the doctors tell you, you know what you need to do. It's hard to have people, especially doctors, not get it, but the good news is that this is a disease you can treat yourself.

[rosetapper23]

You, like many of us on this forum, have solved your health mysteries yourself. You really don't need a doctor (especially a dermatologist!!) telling you that you're not ill and not able to follow a diet that will help you. Since there are many celiacs in your family, you obviously have celiac or gluten sensitivity. Also, since the rash is clearing up, I personally vote for celiac. Testing for celiac is not a perfect science, and a competent doctor is able to make a diagnosis simply on the symptoms and then the relief of symptoms upon following a gluten-free diet. You obviously do not have competent doctors...at least, they are not well educated with regard to celiac and gluten sensitivity. If you continue to follow a gluten-free diet (and eliminate iodine for a while, too, since you probably have Dermatitis Herpetiformis), your doctors will be surprised at your amazing return to good health. If that's not proof enough for them, then dismiss those doctors--and tell your new doctors that you have celiac or gluten sensitivity based on relief from symptoms after following a gluten-free diet. End of story. Good luck to you! I'm so happy that you've found the answer to your tortuous rash....

[Poppi]

You are not alone. My doctor refuses to acknowledge that I have a gluten problem. She wants me to do a 4 month gluten challenge and do testing despite the fact that all the health problems she has been treating me for for years are gone now that I am gluten free. Whatever, I don't need her permission to be gluten free.

The only thing that bothers me is that she refused to test my kids unless I agreed to be tested too so I wound up just making my kids gluten free anyway.

[Skylark]

It seems like some doctors abandoned their common sense in medical school. I'm lucky to have found one who hasn't but they are SO rare.

Thank heavens our diet doesn't require a prescription.

[newgirl11]

Thanks everyone for the input. I feel so much better and supported. Thank God for this forum!

[shadowicewolf]

You are not alone. My doctor refuses to acknowledge that I have a gluten problem. She wants me to do a 4 month gluten challenge and do testing despite the fact that all the health problems she has been treating me for for years are gone now that I am gluten free. Whatever, I don't need her permission to be gluten free.

The only thing that bothers me is that she refused to test my kids unless I agreed to be tested too so I wound up just making my kids gluten free anyway.

I know the feeling. My gi doc seems to think it "may" be gluten intolerency, but wants me to go back on it anyway.

[Salax]

What I can't understand is the doctor's telling people the that "the diet is so hard". Really? Thats your cop-out. But then I forget, if they can't cover up the symptoms with pills, it just doesn't work for them.

Anyways, at least we can decide what food we can or can't eat on our own.

[Lori2]

so why am I so upset to be condesended to and discounted by my doctor.

Because you're a normal human being. No one likes being treated that way. We do have a brain whether they believe it or not.

[frieze]

You are not alone. My doctor refuses to acknowledge that I have a gluten problem. She wants me to do a 4 month gluten challenge and do testing despite the fact that all the health problems she has been treating me for for years are gone now that I am gluten free. Whatever, I don't need her permission to be gluten free.

The only thing that bothers me is that she refused to test my kids unless I agreed to be tested too so I wound up just making my kids gluten free anyway.

This seems rather unethical to me, but she may have done you/your kids a favor......this way they don't carry the dx of celiac, so insurance can't discriminate later.

[MarionG]

This is an article I think everyone especially doctors should read:

Open Original Shared Link

[Jenniferxgfx]

I've had blisters that were dismissed as acne since i was 8 years old. i'm in my 30s. it feels awful to be dismissed by the people who are supposed to help you. i sympathized so much with your post. i haven't been to a dermatologist (the one time i did when i was younger, they weren't real kind), but i had celiac testing (blood & biopsy) that were negative... i went gluten-free anyway and my skin is clearing in some ways and more sensitive than others. but overall theres an improvement. we dont need a doctor for permission to avoid eating the things that make us sick, but it would behoove them to have a little compassion for us and encourage us to listen to our bodies.

it's nice to know i'm not alone with this fight, but it's pretty lousy fight to have to share with anyone.

[jcmi10236]

I am also frustrated. I am a 37 yr old who weighs about 97lbs. I just want to eat. Endoscopy and colonoscopy good. I am concerned about gluten, soy, dairy. Not sure! I know that since I gave up gluten my tummy is so much better. I can not eat sweets, breads, pastas or should I JUST say what I can eat? I can eat baked fish, sweet potato, canned carrots, green beans gluten free pasta, GFcereal. Whats odd is when I do gluten-free waffles they bother my tummy and a couple other products. The other common ingredient in those products is soy?? I am now having constipation issues worse than usual. Possibly from rice bread/rice pasta/rice cheese, etc. Drs suggest constipation, IBS and doing gluten again to retest. Not really worth it but I feel like a hypocondriac when they dismiss me. I would love to gain 15-20 lbs and just dont know how. Doing Boost! Help!

[ravenwoodglass]

I am also frustrated. I am a 37 yr old who weighs about 97lbs. I just want to eat. Endoscopy and colonoscopy good. I am concerned about gluten, soy, dairy. Not sure! I know that since I gave up gluten my tummy is so much better. I can not eat sweets, breads, pastas or should I JUST say what I can eat? I can eat baked fish, sweet potato, canned carrots, green beans gluten free pasta, GFcereal. Whats odd is when I do gluten-free waffles they bother my tummy and a couple other products. The other common ingredient in those products is soy?? I am now having constipation issues worse than usual. Possibly from rice bread/rice pasta/rice cheese, etc. Drs suggest constipation, IBS and doing gluten again to retest. Not really worth it but I feel like a hypocondriac when they dismiss me. I would love to gain 15-20 lbs and just dont know how. Doing Boost! Help!

Your reaction to soy sounds just like mine, I get bound up for days. What I did to gain weight, short term but it stayed on, was I would get a bag of Wylde pretzels (Gluten and soy free) and eat one a day(the small ones). This added about 1,000 calories a day to my diet as I would just open the bag in the morning and munch all day while still eating my regular meals. Within a month or so I had gained the 10 to 15 lbs I still needed to gain. Don't know if that would work for you.

[slee11211]

It seems like some doctors abandoned their common sense in medical school. I'm lucky to have found one who hasn't but they are SO rare.

Thank heavens our diet doesn't require a prescription.

My feeling is that this is WHY our doctors are not being trained or prepared in ANY way for dealing with this silent epidemic. It is because there is not a pill that they can prescribe that is being pushed on them by a shiny happy drug rep. Seriously

[krystynycole]

I don't need a doctor to tell me to eat gluten free. It makes me free better so I do it. My blood work came back negative and my gi refused to do a biopsy because I recently (9 months previous) had a colonoscopy and it looked normal...but he NEVER did a biopsy so who knows for sure? Do not let anyone tell you what you can't eat.

It's too hard is a cop out. It's hard at first, but you get used to it because it is worth it you once you realize how amazing you feel. Go gluten free...what can it hurt?!

[Kathymack56]

Hi.

I have lurked around the forum for some time but never posted. I can relate to your frustration. My PCP continues to tell me my weight loss (85 pounds in 6 months), low white cell count, irritability, aches, pain, brain fog, bloating are all from depression. I know what I feel like when depressed and this isn't it. The doctor did have me see a cancer doctor due to my low white count. Cancer was ruled out. Some type of immune problem was noted but the cancer doc wouldn't diagnosis. I stopped gluten mid November 2010 and have slowly felt better. We have just had a death in the family and out of convience and desperation I have not followed my gluten free diet since July 6. I am miserable with aches and bloating. Please don't make the mistake I've made going back to gluten. I got back on track today.

I hope you are able to find a doctor that will respect your knowledge of your body.

BTW: If anyone on the forum knows of a good doc near Morgantown, WV please let me know.

[AVR1962]

So I know I can heal myself and that I have discovered on my own the source of my misery, so why am I so upset to be condesended to and discounted by my doctor.

It is hard not to be discouraged as we look to medical professionals for hep and advise and it is not always there. I to had to come to my own conclusions. I think that if a doc cannot solve it with meds they don't always know what to do.

I had know for 2 years something was wrong with my stomach but it was fairly innocent. At the same time I was having problems with my eyes blurring, double vision at times....eye doc said my eyes were fine. I was tired, sleeping 10 hours or more a day at times, went to doc and was given prenatal vitamins. At this point I ws not puting things together.

Then I did a liver cleanse to try and boost my metabolism. If it didn't ever work and that's what finally reveiled my proble. I was a real mess, docs could not figure out what was wrong. I had so many tests ran. I was just barely functioning....I was alive but just going thru the motions of the day. Months of this and repeated doc visits and finally a family member with a gluten intolerance suggested I go off just bread and pasts for 10 days......I tried it for 3 weeks and I knew that was my problem.

I was sent to a specilaist and had to take copies of my lab results. Doc never mentioned a word but I was deficient in so many vitamins it was incredible. I was sent to the speicalist to test my parathyroid, as I have kidney stones also and doc wondered if my parathyroid ws malfunctioning. Instead they found I had a growth on my thyroid and that I had lost bone mass in my spine and in my legs.

Go to gastro and they wanted to test me for Celiac which meant going on glutens for 2 months. The 12th day I was so sick.....even 2 Nexium and 2 doses of Pepto a day was not keeping the burning in my stomach away.....I could hardly think or drive. I went back in, told them I knew I was gluten intolerant and asked what the importance of knowing whether I was Celiac was. Doc's answer was that without knowing whether this is Celiac or not they could not help me with my symptoms. I told him that I had been reading that tests weren't real accurate and wondered what his take was. He confirmned this and told me that they would first do a blood tests which he said is not real accurate and then when they got the results from that, if negative, they would want to do a scope and get a biopsy of the intestine. So we are talking closer to 3 months on glutens by th time this testing is done. I told him I had to go off and forego the testing, I was just too sick. He then told me that if I return to their office wanting help they will do the whole thing all over again. I never went back.

I tightened my diet, started reading all labels, buying only items labeled gluten-free was feeling much better. At this point I was pretty much eating only meats, fruits and veggies and then I got dosed. Thank goodness for family who has already been down this road.....I figured it was high fructose that was also giving me the same reaction as glutens. I cannot eat either. I take a daily dairy intolerance pill as I was having a slight reaction to dairy as well and that has helped me alot.....there's an awful lot of foods made with butter and dairy.

Some of my family cannot eat anything with soy, others corn gives issues. So it is a matter of experimenting but don't be discouraged. You will figure it out with persistance.