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Forget Doctors (Or At Lest Mine)

NancyL

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NancyL Explorer
NancyL
Posted

I've had it up to HERE (ummm.. high up) with my Doctor's! They've for the most part been proactive but they will NOT consider the possibility that I have Celiac's or a gluten intolerance. My GI doctor insists that I have IBS. I DO.NOT.HAVE.IBS.! With IBS your abdominal pain is relieved by having a bm. MINE isn't! With IBS you have recurring constipation and then flip to the big "D". I do NOT have constipation. I've had the big "D" every day for 2 flipping years!

Sorry, I'm venting. They're believing the celiac blood work I had done a year ago and basing that off of my "normal" colonoscopy results will look no further. She said to take probiotics (which I have been for MONTHS) and to take Questran (which I've been taking for weeks). GRRRRRR I give up and I am NOT listening to her anymore. She said I could try a gluten free diet but not to go "overboard" with it because I don't have Celiac? WHAT? There is no middle ground.

I went back on gluten yesterday in anticipation of them retesting me darn it. I'm going back off of it today in light of them not pursuing this far enough. I give up. I need to start listening to me, not them. If I get improvement then I'm better. If not, then they can try to figure out what else it could be. In the meantime, I'm forgetting about her and going to think of me!

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ravenwoodglass Mentor
ravenwoodglass
Posted

I'm going back off of it today in light of them not pursuing this far enough. I give up. I need to start listening to me, not them. If I get improvement then I'm better. If not, then they can try to figure out what else it could be. In the meantime, I'm forgetting about her and going to think of me!

There are many here who understand your frustration all too well. Don't they even know that a colonoscopy won't find celiac as that impacts the small not the large intestine! Sometimes we have to let our body tell us what it needs or doesn't. I hope the diet helps your issues and we are here to help in any way we can.

((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))

mushroom Proficient
mushroom
Posted

Put me in the understanding column. If your bowel is so-called "irritable" you want to know what is making it so irritable, not just drug it so it shuts up. :blink: The fact that she told you not to go "overboard" on the gluten free diet illustrates clearly that she does not understand gluten at all. If you cannot find anyone who will support continued efforts at diagnosis, then you are left with the option many of us have taken, to self-diagnose, eat gluten free, and GET BETTER!!!

{{{Hugs}}} to you and May The Force Be With You!!:ph34r: in your efforts. :D

canutillo Rookie
canutillo
Posted

My own experience led me to believe that doctors don't know as much as they think they do. I was told I was too fat to have celiac disease. My dermatologist wouldn't consider my rash being dh- because I didn't have celiac disease, because I was too fat. The rash that went from my waist to my ankles- the one that would ooze and bleed and scab was just "dry" skin.

I had the blood panel done, negative- and the gi was quite insistent that there are no false-negatives. I had the endoscopy biopsy- he took one sample. Negative. The derm took a biopsy of the rash- and he took a blister instead of the area next to a blister. Negative.

I was seriously considering suicide- I was beyond miserable. The dh was unbearable. Then I go back to my derm and he says that another derm was visiting from Europe and would it be ok if she came in. Sure. Honestly, in about five minutes of looking at my chart and my legs she told me that it was celiac.

After I got serious about going gluten-free, the change has been remarkable. I think you should just try it and see if you notice a difference.

jackay Enthusiast
jackay
Posted

I understand your frustration. I saw a different doctor yesterday. He doesn't think my problem is gluten and said I should just try eating everything. Of course my old doctors office didn't send much information to him. I figured they'd send my lab results. I did have blood drawn, will take in specimens and have a colonoscopy and endoscopy scheduled.

The frustrating part is that I'm to come back in two months to go over all the results. TWO MONTHS! :( My D came back in full force five months ago and has stuck with me. It took a long time to get in to see this doctor and now I'm suppose to wait another two months for the test results. If it is bacteria or parasites, I'd like to start treatment asap. I'm hoping if anything shows up that I'll get a phone call. He didn't say that would happen.

I am thinking of trying a small gluten challenge. My DH said if I do that I should make sure it is something I really like. I would love to try a bite of pizza but feel dairy and tomatoes are also issues so can't do that. I think I better just stay away from that nasty gluten.

cahill Collaborator
cahill
Posted

I understand!! I am sorry this is happening for you ,,many of us have had this happen or will have it happen at some point.It is not right nor is it fair but unfortunately until doctors are better educated about celiacs and gluten intolerance,leaky gut ect....it will continue to happen.

I get very angry and extremely sad when I think of the things / time I have lost because of my doctors not being well educated about this disease.

One of the things that infuriates me the most is: some doctors act as if the treatment ((a diet change))is the most outrageous thing they have ever heard... doctors just want to throw pills at us :angry: ..

I have heard some say that they have a great doctor,, but unfortunately I did not have one of them .

Going gluten free, even if you do not have celiacs or a gluten intolerance, will NOT hurt your body in any way.

Try the diet (if you are done with testing)

I wish you much health

(((HUGS)))

MsCurious Enthusiast
MsCurious
Posted

Ugh... I'm sorry, Nancy. I was right where you are...yesterday. I pretty much gave up, shed a few tears, and decided to take matters into my own hands and just go gluten-free and get better. Oddly, first thing this morning I got a an email from my doctor, saying that he had consulted with GI department, and they will be giving me a call to schedule an appointment.

The other poster reiterated what I've said before. I read that UK/Ireland etc are leaps and bounds ahead of us and on average, they diagnose in under a year (which is still a long time) BUT in the USA the average for a diagnosis is 11 years. Eleven years of fighting tooth and nail to get the doctors to listen and believe their patients. :(

I understand if you give up and just go gluten-free. The end result is, you probably would do just that anyway. And honestly, if I get the same runaround with the GI dept... if they don't do the tests right away, I'm going to just go gluten-free too, and the heck with 'em. I know how frustrated you are, and you're probably shedding the same tears of frustration that I did yesterday. Hang in there, and good luck with getting better on the gluten-free!

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cassP Contributor
cassP
Posted

BUT in the USA the average for a diagnosis is 11 years.

... or 25 years... or 46 years.. or never :blink:

annoying...

NANCY: you should just get on the diet- get healthy.. turn your life around- and the next time u see your docs- you can tell them that everything went away when u went gluten free :D

NancyL Explorer
NancyL
Posted
  • Author

NANCY: you should just get on the diet- get healthy.. turn your life around- and the next time u see your docs- you can tell them that everything went away when u went gluten free :D

That's my hope. :) Since I only had gluten for one meal yesterday (in my return to gluten I had some noodles) I'm just going to consider it an OOPS. I went straight back on gluten free today.

cahill Collaborator
cahill
Posted

in the USA the average for a diagnosis is 11 years. Eleven years of fighting tooth and nail to get the doctors to listen and believe their patients. :(

some times they never believe us,, and getting them to LISTEN to us seems an impossible task. :angry:

AerinA Rookie
AerinA
Posted

Don't get me started on doctors. I've been chasing them for years trying to get them to tell me what's wrong with me. My new mantra is that having an MD doesn't grant you common sense. I have literally been going from doctor to doctor for YEARS... I finally changed endocrinologists because my previous doctor tried to tell me my thyroid cancer wasn't metastatic--I have photographic and diagnostic PROOF that it had spread to a major lymph node, he swore it hadn't spread... UGH UGH UGH... and when his answer to my TSH being 27 was to take an extra pill once a week I was over it. It was actually my new endocrinologist who figured out (ABOUT FREAKING TIME!!) that I wasn't ABSORBING my medicine. She was the one who opened my eyes to celiacs, and as soon as I saw this site, I knew... all those things I had been suffering from for so many years... one more UGH and then I'm done ranting.

I understand the ignorance of the general public, but it makes me very sad when doctors perpetuate it.

YOU know when something isn't right with your body... good for you for pushing forward and not taking IBS for an answer.

Hugs, and feel better!

cassP Contributor
cassP
Posted

Don't get me started on doctors. I've been chasing them for years trying to get them to tell me what's wrong with me. My new mantra is that having an MD doesn't grant you common sense. I have literally been going from doctor to doctor for YEARS... I finally changed endocrinologists because my previous doctor tried to tell me my thyroid cancer wasn't metastatic--I have photographic and diagnostic PROOF that it had spread to a major lymph node, he swore it hadn't spread... UGH UGH UGH... and when his answer to my TSH being 27 was to take an extra pill once a week I was over it. It was actually my new endocrinologist who figured out (ABOUT FREAKING TIME!!) that I wasn't ABSORBING my medicine. She was the one who opened my eyes to celiacs, and as soon as I saw this site, I knew... all those things I had been suffering from for so many years... one more UGH and then I'm done ranting.

I understand the ignorance of the general public, but it makes me very sad when doctors perpetuate it.

YOU know when something isn't right with your body... good for you for pushing forward and not taking IBS for an answer.

Hugs, and feel better!

well- God Bless your new Endocrinologist!!

hnybny91 Rookie
hnybny91
Posted

What a stupid doctor! So what if you go "overboard" with gluten free??? Nobody needs gluten to survive! Even if you don't have Celiacs (which you probably do) you would not be doing ANY harm to yourself by cutting out gluten completely. On the other hand, if you DO have celiac and you still eat some gluten (not going overboard by her standards) you could be KILLING yourself!!!

AerinA Rookie
AerinA
Posted

well- God Bless your new Endocrinologist!!

I nearly cried the last time I saw her -- she knows someone with celiac, so she isn't stuck in the "skinny with D" diagnostic formula like most of the doctors I've talked to. She definitely gave me my quality of life back, I couldn't be more grateful.

What a stupid doctor! So what if you go "overboard" with gluten free??? Nobody needs gluten to survive! Even if you don't have Celiacs (which you probably do) you would not be doing ANY harm to yourself by cutting out gluten completely. On the other hand, if you DO have celiac and you still eat some gluten (not going overboard by her standards) you could be KILLING yourself!!!

SO TRUE!! I don't know why any doctor would suggest NOT doing a gluten free diet, since so many people go gluten free for other reasons like to lose weight and end up feeling much better... I mean... the stuff is not GOOD for people, is what I've taken away from all this... I could understand a doctor (albeit an ignorant one) saying you don't HAVE to go gluten-free, but why make a recommendation NOT to? Thank goodness for the internet giving us the power to educate ourselves!

NancyL Explorer
NancyL
Posted
  • Author

Don't get me started on doctors. I've been chasing them for years trying to get them to tell me what's wrong with me. My new mantra is that having an MD doesn't grant you common sense. I have literally been going from doctor to doctor for YEARS... I finally changed endocrinologists because my previous doctor tried to tell me my thyroid cancer wasn't metastatic--I have photographic and diagnostic PROOF that it had spread to a major lymph node, he swore it hadn't spread... UGH UGH UGH... and when his answer to my TSH being 27 was to take an extra pill once a week I was over it. It was actually my new endocrinologist who figured out (ABOUT FREAKING TIME!!) that I wasn't ABSORBING my medicine. She was the one who opened my eyes to celiacs, and as soon as I saw this site, I knew... all those things I had been suffering from for so many years... one more UGH and then I'm done ranting.

I understand the ignorance of the general public, but it makes me very sad when doctors perpetuate it.

YOU know when something isn't right with your body... good for you for pushing forward and not taking IBS for an answer.

Hugs, and feel better!

Thank goodness for the internet because YOUR story needs to be heard! That is amazing what it took for you to get help. I'm so glad to read that some of your symptoms are improving and I hope your thyroid meds can start working for you asap. I think too many of us (ok, me) are too trusting of someone with MD after their name. My eyes are being opened. Better late than never. I think they still serve a valuable service and will continue to see my doctors but I am ready to be more proactive for myself and not take everything they say as "The ONLY" answer.

NancyL Explorer
NancyL
Posted
  • Author

What a stupid doctor! So what if you go "overboard" with gluten free??? Nobody needs gluten to survive! Even if you don't have Celiacs (which you probably do) you would not be doing ANY harm to yourself by cutting out gluten completely. On the other hand, if you DO have celiac and you still eat some gluten (not going overboard by her standards) you could be KILLING yourself!!!

Her response to my asking to go gluten free is what "freed" me, I guess you could say. Hearing that I "shouldn't go 'overboard'" with gluten free made me realize that she does NOT know everything and obviously very little about gluten issues!

jackay Enthusiast
jackay
Posted

Wouldn't it be wonderful if these doctors suffered from gluten intolerance or if one of their kids did. I'm sure they would be more understanding and knowledgeable if they had to live with it.

AerinA Rookie
AerinA
Posted

Wouldn't it be wonderful if these doctors suffered from gluten intolerance or if one of their kids did. I'm sure they would be more understanding and knowledgeable if they had to live with it.

My personal opinion is that people shouldn't BE doctors unless they know what it's like to be sick, or have lived with / been close to someone who has been. Most of the docs I've met have been convinced my issues were in my head... which they would never have dreamed of assuming if they had ever experienced a medical mystery of their own.

LindsayRae329 Rookie
LindsayRae329
Posted

I had doctors make me cry by telling me that my distended abdomen was in my mind and basically calling me a vain girl. It took forever to get them to take me seriously! Even my family thought I was just complaining! I finally found a doctor that really wanted to help me and sent me to a gi dr that has been super helpful, especially with how my symptoms aren't gone after being gluten free for 5 months. I had an appt the other day and he suggested some stuff and set up some tests and said that I need to contact him if it didn't work because he would keep trying to figure it out. I think there need to be more doctors like these guys because some of them are just heartless! Good luck to you! I sure hope that you can find a dr that actually wants to help you and doesn't just blow you off because they aren't smart enough to figure it out!

jackay Enthusiast
jackay
Posted

I had doctors make me cry by telling me that my distended abdomen was in my mind and basically calling me a vain girl. It took forever to get them to take me seriously! Even my family thought I was just complaining! I finally found a doctor that really wanted to help me and sent me to a gi dr that has been super helpful, especially with how my symptoms aren't gone after being gluten free for 5 months. I had an appt the other day and he suggested some stuff and set up some tests and said that I need to contact him if it didn't work because he would keep trying to figure it out. I think there need to be more doctors like these guys because some of them are just heartless! Good luck to you! I sure hope that you can find a dr that actually wants to help you and doesn't just blow you off because they aren't smart enough to figure it out!

I'm interested in knowing what other tests are being run. I was doing much better for several months and then was back to where I started. I figured it was cross contamination but now I will be tested for other things. I'm really disappointed though that my doctor doesn't want to see me for another two months to discuss what my tests show.

I feel that's an awful long time to wait. If there is something that can be treated or done differently, I'd like to know asap.

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm interested in knowing what other tests are being run. I was doing much better for several months and then was back to where I started. I figured it was cross contamination but now I will be tested for other things. I'm really disappointed though that my doctor doesn't want to see me for another two months to discuss what my tests show.

I feel that's an awful long time to wait. If there is something that can be treated or done differently, I'd like to know asap.

You have a right to copies of the tests. Demand copies of them. You can also ask to be put on a cancelation list if you can get there in short notice. You were likely given the first open appointment and the cancelation list can get you in sooner.

jackay Enthusiast
jackay
Posted

You have a right to copies of the tests. Demand copies of them. You can also ask to be put on a cancelation list if you can get there in short notice. You were likely given the first open appointment and the cancelation list can get you in sooner.

I do know I won't be paying for any tests until I get the results.

LindsayRae329 Rookie
LindsayRae329
Posted

I'm interested in knowing what other tests are being run. I was doing much better for several months and then was back to where I started. I figured it was cross contamination but now I will be tested for other things. I'm really disappointed though that my doctor doesn't want to see me for another two months to discuss what my tests show.

I feel that's an awful long time to wait. If there is something that can be treated or done differently, I'd like to know asap.

Last thursday they did a breath test to see if I had a bacterial infection of some sort since antibiotics had worked for a while. The doctor assured me that there wasn't any infection at all. Next week they are doing another ct scan of my abdomen and a lot of blood tests. He told me that he thinks that it's gas (even though i don't feel like I have a lot of extra gas or anything) brought on my an imbalance. He suggested charcoal pills to absorb anything that would cause a lot of gas and "the best probiotics for celiacs" (which i think is bifidobacterium lactis after reading an article on celiac.com) to help with any imbalance and just to promote healing. I'm not exactly sure what he's looking for. He said that he just wanted to make sure that nothing else was going on that said that if it doesn't go away and all the tests are neg then I should call back.

I think that two months is CRAZY!!! I can barely stand waiting at all! I think that a lot of times the doctors don't seem to realize that we have to live with this stuff every day! I think that you should call as many times as it takes to at least get the results! I get my results over the phone every time! of course i have to call them, the people at the dr's office have even sent a rx to my pharmacy without calling so i like to check in if i'm waiting for results or an answer to a question! Hopefully you can call and get any results and then, if whatever results you are waiting on are neg say that you want to go ahead and set up an appt as soon as possible!

Also, I accidentally ate gluten a while back and even though my stomach has been distended for over a year and a half (except for about a week while i was on antibiotics) it ballooned up even more for about a day or two and went back to the regular swelling just as quickly! I know that cc does happen but it definitely doesn't explain why something would stay wrong for more than a few days!

Sorry to ramble on for so long! I doubt this was very helpful but I sure hope that you can get some answers! Just remember that your doctor is working for YOU! Good luck with everything!

WhenDee Rookie
WhenDee
Posted

A celiac friend told me her doctor didn't want to gluten-load her to do the testing. "You don't need this diagosis on your insurance, anyway".

I found out I was celiac after moving to the middle east and getting so sick I had camped out on the couch and was waiting to die. What started as a slow elimination diet (starting with nothing but white rice for three days!), meant to help me recover from a severe bug, ended up proving beyond doubt that wheat was my problem. When I tried to have the tests done, my husband flipped out about me having anything invasive done with basically 3rd-world medical care (our med is better than we thought at first, but it's too late now!).

When I found a total cessation of a multitude of seemingly unrelated problems - from acne to migraines to vitamin deficiencies to extreme constipation - that was good enough for me. Now that I've been gluten-free for several months and I see what a small amount does to me, I know for myself. I don't need a doctor to tell me, and I don't need a biopsy to help me eat differently. This summer if my blood work shows that the vitamin deficiencies are corrected, that will be my "100%" proof.

But even if the vitamin deficiencies require further medical care, it doesn't matter. I was sick for over 16 years, and now I am WELL, like a miracle has occurred. A miracle HAS occurred. You don't need a diagnosis for that, or to convince some ignorant doctor. Do what you know is right for you... and find a new doc.

jackay Enthusiast
jackay
Posted

You have a right to copies of the tests. Demand copies of them. You can also ask to be put on a cancelation list if you can get there in short notice. You were likely given the first open appointment and the cancelation list can get you in sooner.

I stopped in with some specimens today and filled out a release of information. Since some of my specimens are being sent out, it will take 3-4 days for the results. I was told I should get a copy in about seven days. I'll allow seven business days and call if I haven't received them in that time.

I'll need to fill out another release of information when I have my endoscopy and colonoscopy.

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      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
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