Left Adrift By My Gi

[Jonesy]

I'm looking for opinions here. What do you think? Do I need a GI to do my follow up?

On 6-14-05, when I got my diagnosis from my GI (bloodtest and Endoscopy biopsy), he handed me the name and phone # of a woman on the local Celiac Support Group. He said just call her and she'll give you all the help you need. He also set up an appointment with a Dietician to go over the gluten-free diet.

He said something to the effect "You won't be needing me anymore, unless you fail to gain weight in a reasonable length of time. Of course I'm here for you if you have any other problems."

He thought my thyroid #'s were off and told me to see my Primary Care Dr. and have him follow up with that. He said "He might want to lower your thyroid medication, as it seems too high".

No follow-up date suggested. I asked him "what's a reasonable length of time?" (regarding gaining weight) . He said if I don't gain within 3 months, I should come back.

I'm not sure I want to go back to him. I felt that he was rather dismissive of my case. I have since talked to my Primary care Dr., who is in his first year of private practice ( around 35 years of age - not a lot of mileage on him) and he seems interested in having his very first celiac patient. He seems open and eager to learn from his patients. He works closely with my Cardiologist and that's good because my Cardiologist is a seasoned Dr.

It seems to me that I can get more help from forums like this than from any GI or any other kind of Dr. I like the idea of printing out information and dropping it off at the Dr.'s office for him to read and learn. I told him that I will be wanting extra time and attention because my system is so out of whack with my villi totally flat, and he will need to be checking my cholesterol and thyroid and keeping a closer check on my blood work. He said to ask for an extended visit when I make my appointment, and he would be glad to work with me. I like this Dr. and we sort of connected on my first visit. I feel comfortable with him even tho' he hasn't even been around the block.

So, do you think I should just follow up with him, and do you seasoned Celiacs think I should try to find a GI who is willing to work with me.

I can't second guess what questions you might have for me, so ask away, and thanks in advance for your time and opinions.

Regards

Maryellen

[KaitiUSA]

You should get a GI doctor who is a bit knowledgeable in celiac. I think every celiac needs a GI that is knowledgable with it. You should followup with him about every 3 months at the beginning and then maybe longer as you progress

Also, 3 months may not be long enough for symptoms to go away. It varies person to person. So if you still have good and bad days in 3 months don't think the diet is not working, it just takes time.

As for other problems, such as your thyroid(thyroid is related to celiac) you should talk with an endocrinologist about that because that is their specialty.

Be careful about Dietitians because alot of them do not know too much about celiac and have inaccurate info.

You can get a lot of helpful info from this site. Alot of people on here know really good brands of food, and know alot about celiac. Sadly,alot know more then most doctors.

[Jonesy]

Thanks Kaiti, for the reply.

How do I find a GI Dr. who is knowledgeable? The one who diagnosed me was supposed to be and he is the Dr. of the lady from the support group. He diagnosed her 9 years ago.

I think the Dr. figured she knew far more than he did. After visiting with her, I could see why she did actually know more than he did. I cancelled the app't with the dietician.

She was a tremendous help to me and is responsible for getting me started on the right track.

I've been doing more reading here than posting. The more I read, the more questions I have.

My cardiologist is the one who sent me to the GI Dr. for a colonoscopy. He (the Cardi) told me he was sure I didn't have a problem with malabsorption because I didn't have diarrhea! Wrong. But he seems to be a good heart Dr. He has gotten me off a couple of meds that he felt I didn't really need.

Regards

Maryellen

[Guest nini]

I onlly follow up with my GI once a year. He sent me back to the GP that referred me to him for my regular follow up care. (blood work ups and such) He also sent me to a dietician, that I was really frustrated with, because even in my limited knowledge at first, I STILL knew more than her! I felt like my GI was extremely knowledgeable about Celiac, but he felt that as long as I was doing better on the diet, I didn't need him. Now, if I wasn't improving, he said he WOULD want to see me back more regularly. My reg. Dr.s office (the GP that originally referred me to the GI) has been making an effort to learn more about Celiac, and the last time I was in there, the Physician's Assistant was talking to me about the different medical journal articles she'd been reading about Celiac. I was apparently their first Celiac patient at my GP's office.

So I think IF you are doing better on the gluten-free diet, then YES your GP's office can adequately do the follow up's... If you are NOT improving then I would go back to the GI doc. That's my 2 cents!

[Jonesy]

Thanks Nini

That sounds like a reasonable approach. My GI didn't even suggest a follow up with him in a year, but I certainly will see him again if I don't seem to improve in a few months.

I can tell that I definitely feel better on the gluten-free diet. My colon is calm and not in an uproar all the time. I 'm still short on energy, but I'm sure that will take some time.

Re: my GP - since he doesn't have any other celiac patients, how will he know what blood tests to take and just what he needs to be watching for? We know my thyroid #'s were off, but I surely must have nutritional deficiencies by now. How do we know what needs to be checked? Last Fall my full blood panel showed that my cholesterol was 130 (which is good - but it was a drastic drop from 180 between April and November)

These are the things I wonder about when dealing with Dr.'s who don't know much about the complications of Celiac. Is that the kind of guidance I can hope to find on these message boards?

Everyone is so helpful here.

Regards

Maryellen

[KaitiUSA]

If you don't get a GI doctor for your followup you should have a general doctor who at least knows about celiac.

If you go to the homepage of this site you and scroll down there is a link to doctors recommended by other celiacs. You can look up your state and everything to see doctors in your area.

Any doctor can give you followup blood work but ones that are not familiar with celiac will not be as helpful as one who is.

In my opinion, every celiac should have a doctor who knows alot about it.

This site pretty much covers everything and will help with any questions you have

[Jonesy]

Thanks Kaiti

I went to the homepage. There are 2 Dr's listed in my State of TN !

Fortunately one of them is a GI at Vanderbilt U in Nashville, only about one hour away. That's a good thing to know.

I didn't know that list was there, so thanks for the tip.

Regards,

Maryellen

[cdford]

I have been through a couple of GIs. With one, my primary care doctor did a much better job of following up.

In our case, if we had not seen a doctor by accident who was just out of school, we would never have been diagnosed with some of our problems. Our regular primary was on vacation and the other docs in the practice were overwhelmed so they passed me off to a new doc who did not have a big patient load yet. She took one good look at the chart, did a couple of tests, and voila...a diagnosis. With that particular problem, it is so unusual for someone my age to get it that the other docs did not even think to look for it. If your newbie is interested and is researching, he may very well come across new information that those with lots of years in practice are not looking for.

Tough call. I'd trust my gut on this one at least for a little while.

[Jonesy]

Donna

I appreciate the input. Thanks for the suggestion to trust my gut on this one. That's exactly what I want to do because my instincts tell me that this young Dr. will be far more open minded.

When I went to him following my GI's diagnosis, I gave him the opportunity to decline to be my GP, because it would mean learning about a disease he was not practiced in and I might be a big pain in the butt. He admitted he had never even met a Celiac, let alone treat one and he welcomed the idea of continuing to care for me. We are in TN less than a year, so all my Drs. are new to me. I chose them based on their location and what I could find out about them.

My GI was aware that it is rare to find celiac disease in a 77 year old woman, and his colleagues agreed they had never had anyone present like I did. My GP is not aware that my age makes me an unusual case.

I will see my GP in 4-5 weeks to have my thyroid #'s checked again, and I am printing off some information for him to look at, and begin educating him. I need to be careful not to overwhelm him with too much information at one time. I hope to turn him into an advocate for Celiacs, and enable him to be alert to other conditions that his patients might present with that should cause him to test them for Celiac. It's a shame that this condition is so underdiagnosed.

I'm glad for you that you got pushed off to the new Dr. who didn't have a large patient load yet. Hope he still has plenty of time for you.

Regards

Maryellen

[Guest nini]

This board can be a great place to ask and get answers to all kinds of questions.

Your new GP sounds like a good Dr., sometimes it's better if they are newer in the Practice of Medicine and more open to listening to patients and learning about "mysterious" conditions.

[Jonesy]

so, Nini - educate me please.

What is a "cornaholic"? and what is TP ? (I know what a bung hole is - I think)

I haven't come across these terms, and I figure you say them with tongue in cheek. I love corn so does that make me a cornaholic?

Maryellen

[Merika]

Hi Maryellen

You are not the only 77 yr old woman with celiac. I am very happy for your diagnosis. I know that sounds weird, but it gives you the chance for good health and a better life.

I'm 32, but my grandmother was 75 when she went to Mayo Clinic for ongoing health problems and they missed her diagnosis . My mother was diagnosed 2 yrs ago, sadly about 6 mos after my grandmother's death. I was diagnosed after my mother. My grandmother, had she lived, would no doubt have been diagnosed celiac. She was 80 when she died. The docs never could figure out what was wrong with her, and she died of digestive trouble.

I know this is a lot at once, but have you asked the rest of your family to get tested? It runs in families.

Welcome to the board

Merika

[Guest nini]

Maryellen, Cornholio is just the "alter ego" of the cartoon character in my user pic. It's from the show Beavis and Butthead, and when he gets too much caffeine or sugar he starts running around like a lunatic saying "I AM CORNHOLIO, I NEED T.P. (toilet paper) FOR MY BUNGHOLE (butthole)" and it just cracks me up every time I see it! (I know, sick sense of humor, but hey, ya gotta find something to laugh at!)

[Jonesy]

Nini

Thanks for the reply. That's just hilarious. I've heard of Beavis and Butthead, but of course it's never on at my house. It's great that you have a good sense of humor. It will get you past many rough spots in life.

Keep laughing.

Maryellen

[Jonesy]

Thanks Merika

Yes, I'm happy for my diagnosis because I have 12 grandchildren that I'm concerned about, and 5 nieces and nephews.

I have informed my six children of their need to be tested. They have indicated that they will, and my daughter has already taken her 21 year old to the Dr. for the test. He's in college and still on their insurance. (don't have the results yet).

I'm sure my Father was celiac, based on what I've been reading. He was diagnosed with diabetes in his 30's and was also alcoholic. In that day, the medical community didn't know much about diabetes or alcoholism. We had never heard of AA, or Celiac disease. So the poor man died in 1946 at the age of 48. He was 5'7" and very skinny - weighed 120 lbs. He had muscle wasting even tho' he walked to and from work 6 blocks every day (no auto in the household). We thought the loss of muscle mass was due to diabetes, but who knows!

With the Awareness and Education the Celiac community has launched, we can hope that Celiac will become much more widely recognized.

I'm happy for you that you and your Mom have your diagnosis and will be able to educate the rest of the clan. At age 32 you have a good chance for a healthier life, and you can be an inspiration for others to succeed in the gluten-free life. I emailed my 80 year old sister about it being genetic and encouraged her to have her children & grandchildren tested for it. I will contact my brother's children also.

My brother was bi-polar and took his own life at the age of 48.

Maryellen

[Guest nini]

You're Welcome...

I was diagnosed 2 years ago at 34, I'm still trying to convince my mom, sister, dad and aunts and uncles to be tested. My dad is currently the only one who's dr's had recommended the gluten free diet for his symptoms. He has said he does better on it, but not quite willing to go completely gluten-free yet... I'm still working on him.

[Rikki Tikki]

Hio Jonsey:

i have to say your posts made me smile tonight! I don't know about follow up care. In my area it is just not available. When my GI doctor diagnosed he said I would know more about it in a year that he did and left it at that. It is really frustrating and I feel like my GP does not really want to hear about it. I would think they should check blood levels for vitamins and such but at least here they don't. I keep thinking it's time to move on and get a new doctor but then time goes by and I don't do it.

Anyway thanks for making me smile!

Sally

[Guest BERNESES]

Just wanted to say welcome! My GI doesn't even believe I have it. My GP who is young (about 35 too) is much more knowledgeable and receptive. I do want to find a GI who is better but in the last six months, I went through so many hellish tests because of Gi's that I' a little GI shy right now. You've come to a GREAT place- there's so much information and so many great people! I don't know what I would have done without this community! Beverly