What Type Of Doctor Do You See Regarding Your celiac disease?

[glutenexpat]

I am new to the boards here, so please excuse me if this question has come up previously. I am wondering what type of doctor do you see for your celiac disease? I am most interested in who you are seeing for follow up work and ongoing care?

I was diagnosed almost accidently in November 2004. I was having an endoscopy and colonoscopy for ongoing stomach problems during the procedure she just for the "fun of it" she decided to take a biopsy of my small bowel though she told me I really doubt you have Celiac Sprue, I am going to have the biopsy checked anyway. Low and behold it turned out positive, then she ran the blood tests and told me I needed to go on a gluten free diet. She gave me a very brief hand out, told to come back in 4 years for a follow up on a seperate finding from the colonoscopy, and told "good luck on the Gluten free diet and in dealing with your Celiac Disease." I was never told about follow up tests, never given exact results of the blood tests other than they confirmed the diagnosis, and was never told who I should be seeing for "treatment" I realize that there really is not treatment other than the gluten-free diet, but I am learning that there is much more to celiac disease than just trying to be gluten-free.

It was a rude awaking when I went to my primary doctor after this episode with the GI, to find out that most physician know very little about Celiac Disease. When I asked my primary doctor about having my child tested, she said "what harm could it do your child to go on the gluten-free diet. it could not hurt to any of us to eat more healthy." She just does not get it!

Anyhow I would appreciate your thoughts and input.

[jerseyangel]

Hi T, and welcome in to the wonderful world of Celiac! Where the patients quickly know more about how it works than the doctors. I, too got "gluten-free, dairy free diet, see you in 6 months". I learned everything I know about this disease right here. Keep reading and feel free to ask any questions that come up along the way. Everyone here is very caring and knowledgeable and have been where you are right now. To answer your question about which doctor--I see my gastroenterologist once a year now, for all the good it does me

[DingoGirl]

Welcome, T - I was lucky, was very sick, blood in stool for a long, long time (I ignored it), severe anemia, very weird poop, etc. My regular doctor sent me to a wonderful gastroenterologist. He immediately suspected Celiac, rearranged the next day's schedule slightly and got me in for colonoscopy/endoscopy. I saw him one month later, and then he scheuled a followup for three months after that, and then I"ll probably see him in six months to a year.

I, as many other people, get most of my information from this board and people who live wtih the disease. I think your doctor was pretty negligent! but, feel free to ask away here. There are good books as well -"Dangerous Grains" is one and there are others.

Blessings to you -

Susan

[tiredofdoctors]

Welcome T -- you've joined a great group of people! With regard to my doctors, I see two neurologists -- my celiac is in my brain (NOT in my head!!!) . . . Lynne

[ms-sillyak-screwed]

glutenexpat -- You will get the answers and support you will need here with the loving people on this site.

First you might like to buy the book mentioned above -"Dangerous Grains" you must must read it.

Open Original Shared Link has it right here. If you can't affort to buy it call your local library see if they have a copy, if not have them do an inter library loan. And once you pick it up, you won't want to put it down. There are a few books with accurate informations and more with misinformation. There are several threads here about good/bad books to read.

Have you started the gluten free diet yet? It's the key to wellness...

What are some of your other illnesses? Or symptoms?

Some of us here are seeking all sorts of treatment... like I have been going to my chiropractor. Sounds odd I know, but he is resetting my digestive system along with changing some eating patterns. With his help I have been able to gain some weight I was down to 98lbs, now I'm up to 107.5 and I'm feeling much better with a combination of alternative things. I also see a neurologists, endocrinologist and I've walk-out-of more gastro doctors offices then I can count. Some with celiac disease are seeking acupuncture treatments, many people are into digestive enzymes, pobotics and vitamins.

[ladyx]

I am new to the boards here, so please excuse me if this question has come up previously. I am wondering what type of doctor do you see for your celiac disease? I am most interested in who you are seeing for follow up work and ongoing care?

I was diagnosed almost accidently in November 2004. I was having an endoscopy and colonoscopy for ongoing stomach problems during the procedure she just for the "fun of it" she decided to take a biopsy of my small bowel though she told me I really doubt you have Celiac Sprue, I am going to have the biopsy checked anyway. Low and behold it turned out positive, then she ran the blood tests and told me I needed to go on a gluten free diet. She gave me a very brief hand out, told to come back in 4 years for a follow up on a seperate finding from the colonoscopy, and told "good luck on the Gluten free diet and in dealing with your Celiac Disease." I was never told about follow up tests, never given exact results of the blood tests other than they confirmed the diagnosis, and was never told who I should be seeing for "treatment" I realize that there really is not treatment other than the gluten-free diet, but I am learning that there is much more to celiac disease than just trying to be gluten-free.

It was a rude awaking when I went to my primary doctor after this episode with the GI, to find out that most physician know very little about Celiac Disease. When I asked my primary doctor about having my child tested, she said "what harm could it do your child to go on the gluten-free diet. it could not hurt to any of us to eat more healthy." She just does not get it!

Anyhow I would appreciate your thoughts and input.

Wow, I have read a lot of threds and am feeling like I am really blessed. My sons pediatric gi doctor was great when he was diagnosed. He gave us our first book about celiac and ordered blood tests for the whole family... and if none of the blood tests come back positive on the parents he does a gene test to find out what side of the family it came from so you can let your other family members know to get tested. Also, after you have been on a gluten free diet for awhile you should go back in for a blood test and it should be negative. That way if it isn't then you know your getting hidden gluten and can try to figure it out. He gave me a whole list of books that we could buy through the doctor's office that they buy in bulk and sell to their paitents at the cost they got them for. They even have a support group that meets to exchange ideas. He also suggested I see a nutritionest because we are vegetarians as well as gluten free. He also wants us to come back in for follow up blood test to make sure we are getting the nutrition we need. Call around till you find a doctor who is knowlegeable on celiac diease. Some one who can point you in the right direction and give you the help you need. You might call around and find a nutritonist as well who knows about celiac and can help you get started. Good luck! as Ms. syl screwed stated above their are altenatives as well... aloe juice worked really well to heal my insides and 3 other people I know so maybe you could try some of that.

[jaten]

Celiac physical care from a GI

Celiac knowledge and emotional support hugely from this board.

[AmandaD]

After I was diagnosed in September I had a 6 month followup where they took my vitamin D level, did a dexa bone scan, and did another TTG to see how I was responding to the diet. I am now supposed to see my G.I. doctor once a year for the rest of my life - where they will run the TTG and vitamin levels and blood counts to make sure I'm avoiding osteoporosis and staying on the diet.

My G.I. told me not to deal with my primary or family doctor regarding celiac - she said family practitioners generally won't do the same kind of testing and checkups that I'll need done for the rest of my life.

My best advice is to find a good G.I. (possibly at a teaching hospital or research hospital - I go to the University of Wisconsin hospital where they are very knowledgeable about celiac) and stick with that doctor, while alternative medicine can benefit some...I really feel celiac care should be through an appropriate medically trained professional.

After I was diagnosed in September I had a 6 month followup where they took my vitamin D level, did a dexa bone scan, and did another TTG to see how I was responding to the diet. I am now supposed to see my G.I. doctor once a year for the rest of my life - where they will run the TTG and vitamin levels and blood counts to make sure I'm avoiding osteoporosis and staying on the diet.

My G.I. told me not to deal with my primary or family doctor regarding celiac - she said family practitioners generally won't do the same kind of testing and checkups that I'll need done for the rest of my life.

My best advice is to find a good G.I. (possibly at a teaching hospital or research hospital - I go to the University of Wisconsin hospital where they are very knowledgeable about celiac) and stick with that doctor, while alternative medicine can benefit some...I really feel celiac care should be through an appropriate medically trained professional.

Also - I have 3 children under 5 and they have all been tested...as have some members of my immediate family - father, bro, etc...

[chrissy]

my kids(3 with celiac) see a pediactric gi. they were diagnosed the week between christmas and new years. we have also had 4 more of our children tested and my husband and myself. we have 4 more children that have not been tested yet. we know that one of our celiac free children has a celiac gene----so he will be tested yearly. the rest of us will be tested on a periodic basis until we know whether or not we have the gene. my family is going to be part of a celiac study, so hopefully we will know how many of us carry the gene----then we will know who needs ongoing testing. we have an appt. on june 1st with the ped gi to have their Ttg levels retested. i have also been in contact by phone with our ped gi. i have a friend with celiac, so i knew a fair amount about it before mykids were diagnosed, but after being on this board, i think i am more up to date on info than my celiac friend. welcome to the boards

christine

[ms-sillyak-screwed]

nutritonists leave a lot to be desired if you live in south east florida.

Interview them first before you spend money for nothing. Ask them how much experience they have in helping people with celiac disease. How many other Celiac they treat? Ask if they speak to Celiac's at hospitails or support groups? Ask if they have read DANGEROUS GRAINS or the PALIO DIET? Or any of the best selling Celiac books. If they can't answer yes to any of those questions skip it it's a waste of your money.

Your best information will be found here on this site.

Be well!

[tiredofdoctors]

Oh -- I forgot -- I also see a registered dietician -- she specializes in Celiac Disease -- and she is helping me to coordinate my new Celiac diet with a weight lost regime -- not an easy task, considering that I can't walk straight, have no muscular coordination (my brain just doesn't tell my muscles the right thing to do anymore!) and haven't figured out how to BURN the calories that I intake. She is FANTASTIC. I would recommend her to anyone, and I would recommend to anyone that they find a registered dietician in their area that specializes in celiac. Hard to find, but worth the effort.

[sillyyak]

I got pretty sick before they finally diagnosed me (GI doc was the last specialty consult I had before I was going to be shipped to psych) and am on a slow road to recovery. Thus, I see a GI doc and an internist for my follow-up. GI is about 2x a year. Internist about every 2 months or so. I am not the norm in terms of follow-up (I think?) but an example of what happens when you get really sick and they cannot diagnose you!

I also get support from this website. It is very helpful.

[MicheleNY]

Hello Everyone!

I didn't even realize this forum was here until today! I, like most of you have been diagnosed with everything you can imagine over my 43 years and wasn't "officially" diagnosed with Celiac's Disease, by blood test, until a year or so ago. I have been symptomatic since (according to my Mother) I was 9 months old and wasn't growing as fast as they expected me to. Last Fall, I casually mentioned to our pediatrician that my 14 year old daughter's fatigue and depression sounded an awful lot like my celiacs or my thyroid problem. She gasped in horror, told me I should have all three of my kids tested (and shame on my doc for not telling me so!). So, we did the blood work, all positive, did the endoscopies and they too were all positive. Now, I don't know if I should have the endoscopy. My regular doctor (who thinks I should be gluten free when convenient!) doesn't think I need to, what good would it do is his point of view. Any opinions out there?

By the way, it's taken quite a bit of time (denial is a wonderful state to be in!)but all three of my sisters and my parents have been tested, one sister was positive and everyone else was negative. We're currently signing up for a UC-Irvine celiac's study, has anyone else done this?

Celiac's isn't the end of the world but, you still have to eat so...it's difficult to make the choice to eat right every single time you put food into your mouth. My two teen-age kids face the toughest times because they serve pizza at every single gathering they attend and stop by fast food places on the way home from sporting events - you can only eat so much salad! Ah well, it just felt good to say that to some people who can understand what we're going through here - thanks!

Michele

[Lauren M]

I see the best.... Dr. Fasano

The GI I had before Dr.F just didn't know enough about Celiac Disease. Dr. Fasano stepped in at a crucial time for me, and literally saved my life. I had to see him quite frequently at first, now it's only twice a year (checking my antibody levels).

I also see a nutrionist because I have a difficult time maintaining a healthy weight. I see her every other week.

Lastly, I have a PCP who manages the side effects I have because of the Celiac Disease: anemia (blood work to check my iron levels) and osteopenia (evaluates bone density scans).

Hope that helps!

- Lauren

[glutenexpat]

Thank you all for your information and replies. Since I was dx'd in Oct. 2004, I have learned everything I know about celiac disease from the internet or from reading books. I did see a dietician, several months after being diagnosed, but that turned out to be fruitless, as I knew more about the gluten free diet than she did. I am finding that there are not many if any doctors here in NE Florida that have much if any knowledge of celiac disease or the proper follow-up/treatment of the disease.

I do belong to a local support group, and they seem to be having the same struggles I am having locating someone to take charge of follow up testing etc. If anyone is located in this area that has a doctor that is on the right track and is knowledgable about celiac disease, please let me know, I need someone to handle the follow up tests that I should have had done a year and a half ago.

I look forward to learning from you all and sharing with you what I have learned by trial and error.

Take care.

[ms-sillyak-screwed]

DON'T SEE a nutrionist or dietician unless they have read DANGEROUS GRAIN, or the PALEO DIET.

PLEASE do be afraid to ask how much they know before you go to your visit and how many Celiac's they have treated. Ask if they have read these books.

SAVE your MONEY! They don't have a clue, we do know more then they do...

glutenexpat --- I know what you mean about support group. The one down here leaves a lot to be desired. They have their own AGENDA, and push their vitamins and their doctor that doesn't carry medical malpractice ins... and on and on. They are in denial about seconhardy food allergies and don't have an open mind.

I think a major hospital in JACKSONVILLE treats celiac disease. I will do some research and post it for you.

Q -Do you know what they say about getting sick in Florida? Where is the first place to go when you get sick here?

scroll down

A - To the Airport!

[notcrazy]

Welcome T -- you've joined a great group of people! With regard to my doctors, I see two neurologists -- my celiac is in my brain (NOT in my head!!!) . . . Lynne

Hey T if you are still out there- do you mind if I ask what your aRe seeing neuologists for? I am doing the same thing and discovered all this may not be in my head after all and would love to know if I am not alone as I discover celaic really may be the cause of an array of troubles for me

[charles76]

Hey T if you are still out there- do you mind if I ask what your aRe seeing neuologists for? I am doing the same thing and discovered all this may not be in my head after all and would love to know if I am not alone as I discover celaic really may be the cause of an array of troubles for me

Hi notcrazy, and no we're definitely not about then effects of gluten,

T didn't reply yet, but I thought I might quickly mention some information that might help you and others.

Gluten can cause an immune reaction, which can affect mood by increasing (I believe) serotonin - which can cause symptoms of depression. This makes sense as the body tries to impair you from eating more while it heals - different from anaphylactic reactions (peanuts, shelfish). (I get a stuffy nose from other things I'm allergic to - can't breathe, so can't eat.. makes sense, though I also have an increased heart rate initially, and then much later difficulty sleeping).

This can be counteracted by stimulants that increase dopamine, like coffee, tea, etc, until the gluten reaction is over. Helps with "foggy head". Ideally the G.F. diet is necessary. I don't even eat white vinegar.

There are other effects as well. The immune systems is directly integrated with the nervous system - no mind/body separation with gluten effects.

Hope that helps..

best of luck

[Tina B]

I am new to the boards here, so please excuse me if this question has come up previously. I am wondering what type of doctor do you see for your celiac disease? I am most interested in who you are seeing for follow up work and ongoing care?

I was diagnosed almost accidently in November 2004. I was having an endoscopy and colonoscopy for ongoing stomach problems during the procedure she just for the "fun of it" she decided to take a biopsy of my small bowel though she told me I really doubt you have Celiac Sprue, I am going to have the biopsy checked anyway. Low and behold it turned out positive, then she ran the blood tests and told me I needed to go on a gluten free diet. She gave me a very brief hand out, told to come back in 4 years for a follow up on a seperate finding from the colonoscopy, and told "good luck on the Gluten free diet and in dealing with your Celiac Disease." I was never told about follow up tests, never given exact results of the blood tests other than they confirmed the diagnosis, and was never told who I should be seeing for "treatment" I realize that there really is not treatment other than the gluten-free diet, but I am learning that there is much more to celiac disease than just trying to be gluten-free.

It was a rude awaking when I went to my primary doctor after this episode with the GI, to find out that most physician know very little about Celiac Disease. When I asked my primary doctor about having my child tested, she said "what harm could it do your child to go on the gluten-free diet. it could not hurt to any of us to eat more healthy." She just does not get it!

Anyhow I would appreciate your thoughts and input.

Once the diagnosis is made the only treatment is the gluten free diet. The only follow up is with a GOOD primary for usual screenings ie: lipid panel, if 50 or more bone densitometry, and my primary also adds thyroid function to annual blood work. Part of annual is H&H anyway which checks for anemia. I did have bone densitometry at 45 due to celiac and that was my gynocologists idea because of possible years of malabsorbsion before diagnosis. Not that my primary didn't think of it, I just happened to have the appt with the gyn first. The reason was to see if I would need something like Boniva, myacalcin or one of the other osteoporisis drugs earlier than normal screening would be done.

[Tina B]

DON'T SEE a nutrionist or dietician unless they have read DANGEROUS GRAIN, or the PALEO DIET.

PLEASE do be afraid to ask how much they know before you go to your visit and how many Celiac's they have treated. Ask if they have read these books.

SAVE your MONEY! They don't have a clue, we do know more then they do...

glutenexpat --- I know what you mean about support group. The one down here leaves a lot to be desired. They have their own AGENDA, and push their vitamins and their doctor that doesn't carry medical malpractice ins... and on and on. They are in denial about seconhardy food allergies and don't have an open mind.

I think a major hospital in JACKSONVILLE treats celiac disease. I will do some research and post it for you.

Q -Do you know what they say about getting sick in Florida? Where is the first place to go when you get sick here?

scroll down

A - To the Airport!

HAHA AGREED!!!!! I am a nurse and we see some atrocious things done on people in Florida when the snowbirds come back here to New England for the summer.

[Luana D]

On 4/27/2006 at 0:29 PM, glutenexpat said:

I am new to the boards here, so please excuse me if this question has come up previously. I am wondering what type of doctor do you see for your celiac disease? I am most interested in who you are seeing for follow up work and ongoing care?

 

I was diagnosed almost accidently in November 2004. I was having an endoscopy and colonoscopy for ongoing stomach problems during the procedure she just for the "fun of it" she decided to take a biopsy of my small bowel though she told me I really doubt you have Celiac Sprue, I am going to have the biopsy checked anyway. Low and behold it turned out positive, then she ran the blood tests and told me I needed to go on a gluten free diet. She gave me a very brief hand out, told to come back in 4 years for a follow up on a seperate finding from the colonoscopy, and told "good luck on the Gluten free diet and in dealing with your Celiac Disease." I was never told about follow up tests, never given exact results of the blood tests other than they confirmed the diagnosis, and was never told who I should be seeing for "treatment" I realize that there really is not treatment other than the gluten-free diet, but I am learning that there is much more to celiac disease than just trying to be gluten-free.

 

It was a rude awaking when I went to my primary doctor after this episode with the GI, to find out that most physician know very little about Celiac Disease. When I asked my primary doctor about having my child tested, she said "what harm could it do your child to go on the gluten-free diet. it could not hurt to any of us to eat more healthy." She just does not get it!

 

Anyhow I would appreciate your thoughts and input.

 

[Luana D]

Hi, I am new to this group. I am currently on a quest for answers and I am quite frustrated. I have been to many offices where I get scheduled with nurse practitioners.... then they leave. I live in Hawaii and we don't have very many specialist and when we get one they don't stay long due to high malpractice insurance. I have had digestion problems for many years and very high triglycerides (910) which I am on medication to control. In 2014 decided to look into it. I've had colonoscopy, gall bladder ultrasound, and finally HIDA scan in which they found my gall bladder function only at 10%. I had my gall bladder removed and still have digestion problems, maybe even worse now. I am now on my 3rd nurse practitioner after I asked to scheduled with a Dr. and the very first visit I had with her I gave her the run down on all my symptoms and expressed my frustrations. While I was talking she was typing away on her computer then told me when I was finished that I should take anti depressants and talk to a therapist.. my jaw dropped!!! I explained that eating, a normal every day function to survive, causes me so much pain. I starve myself at work as hungry as I might be because I don't want to deal with pain and frequent bathroom visits. I get anxiety when I leave the house due to fear of a flare up. My current Aprn finally after blood test revealed iron deficient anemia ordered a celiac test and a test to check for parasites in stool. I got news today that they were negative for celiac and parasites. I am at a loss because I have no answers. The only thing she told me was to go back to my Gastroentorologist for a follow up. I tried to eat gluten free food which during my trial was cheerios and I did not experience the pain I normally would have after eating. Does anyone have any advice on what my next steps should be or have experienced what I have? I do have a first cousin that has celiac disease, but I don't know if it is a close enough relative to be considered hereditary. 

I look forward to hearing from any of you who has advice for me.

 

[TexasJen]

Hi Luana-

I'm sorry to hear that you are feeling poorly.  It seems as though, due to the severe pain after eating, your GI doc would have recommended an upper scope as well (looking for an ulcer, gastritis, or some other disease.) It could also find seronegative celiac (meaning celiac disease that you can see under the microscope with a biopsy but the antibody blood tests are negative).

Did you have that?  Did he/she do biopsies?  If not you might want to consider talking to the GI doc and seeing if they think it's reasonable.

If thats negative, you could still have Non-celiac gluten sensitivity ( NCGS). This is a disease where people have similar symptoms to celiac - stomach pain, bloating, changes in bowels - that gets better when they avoid gluten but all the tests are negative.  So, if you talk to the GI doc again, get the scope, it sounds like it would be worth going gluten free.  (that's the treatment, BTW - gluten free diet and fairly strict too)

Some people would choose to just go gluten free and not get the scope if they feel so much better avoiding gluten. 

FYI- Cheerios probably aren't really gluten free enough. Best to avoid all flavors of Cheerios. Try Chex cereals (except wheat). Avoid oats too for a while

Also, it would probably be best next time to start your own post rather than adding on to a post that's 7 years old. You'll get more answers that way!

Good luck!

 

[Luana D]

Hi TexasJen,

Thanks for your response. I have never joined a support group like this before so I couldn't even figure out where to start one of my own post. lol I'm still learning. I'll figure it out. I got news via telephone yesterday that my celiac test was negative and also negative for parasites. So now I will see my GI doc again and get her to investigate. I feel I am not getting nutrients from what I am eating because (sorry for TMI) I am seeing undigested food so I know something is not right....  I will try to eat gluten free every now and then because I don't experience the discomfort when I do but will not go completely off gluten until the problem is uncovered because I want a diagnosis from a professional. Thank you for your suggestions and I will ask her to do the scope and biopsy. I'm even willing to do another colonoscopy if it helps get me the answers I desperately need. In the meantime I will try to figure out how to start my own posts so bear with me.

Thank you again

[cyclinglady]

Hi Luana!  

I think a re-visit with your GI is in order.  There must be a reason for your anemia.  

I was like you.  My gallbladder was removed when my HIDA was at 0% and infected.  Non-functioning gallbladders are a family curse.  I went for a cancer screening colonoscopy because I hit 50.  My GI noticed my anemia and ordered a FULL celiac lab panel.  I only had one positive on the panel and it was NOT the common TTG IgA.  Please  get copies of your lab tests from the NP.  You might have just had the screening TTG IgA which is the cheapest.  It catches most but not celiacs like me!  If you did not get the full panel, ask the GI for one or you might be seronegative as Texas Jen suggested.  So, an endoscopy (from the mouth to the small intestine) might be in order. 

Do not give up!  Something is wrong!