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Which Types Of Doctors Do Celiacs Need?
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I've been trying my best to live gluten-free since Nov 07. My doctor considers the matter resolved since trying a gluten-free diet, and honestly he hasn't endeavored to learn anything more about celiac or gluten. I've been pretty much on my own.

What I want to know is, are there specific kinds of tests a celiac should get regularly? Is it worth it to spend money on a Dietitian? I would imagine that damage to the gut causes increased risk of colon cancer, so what about that?

Can anyone think of anything? I'd like to run them by my doctor because he's always willing to recommend me to someone if he thinks I need it.

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I was diagnosed last week. The first thing my GI doc did was give me a referral to a dietician (Kaiser- "nutrition services" or something like that). I'm going Friday. I've been doing a ton of reading, though, and that seems to arm me pretty well. I'll do my best to let you know if they offer anything interesting. (PM me if I forget) One of my seemingly unrelated (but definitely related!) symptoms has been extreme energy drops two hours after a meal (like a blood sugar crash--but blood sugar tested ok every time), and I'm going to ask about that.

Other than that, my GI wants to see me in three months, then once a year after that.

Good luck.

I've been trying my best to live gluten-free since Nov 07. My doctor considers the matter resolved since trying a gluten-free diet, and honestly he hasn't endeavored to learn anything more about celiac or gluten. I've been pretty much on my own.

What I want to know is, are there specific kinds of tests a celiac should get regularly? Is it worth it to spend money on a Dietitian? I would imagine that damage to the gut causes increased risk of colon cancer, so what about that?

Can anyone think of anything? I'd like to run them by my doctor because he's always willing to recommend me to someone if he thinks I need it.

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Cool thank you!

You know, I have to wonder if there isn't a specialist for this type of thing. I mean, shouldn't somebody want to focus on it?

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A GI would be the best person to follow your care, as there are screenings that should be performed on a celiac that are either done later, or not routinely on a non-celiac.

They should also be more knowledgable than a GP, and if you encounter further problems, you already are established with them and in a better position to find help.

In your situation, it might be best if your doctor could refer you (or maybe your doc has to). I went to my first GI unreferred, and he thought I was crazy and made myself sick. My GP made the appt with the second one, and things were completely different. I'm not sure how much difference it made, the first could have just been arrogant, but it seemed that having my GP behind me validated why I needed to be there.

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Honestly you can learn more on here & other sites on your own than most dieticians can share with you .Some insurances will not pay for the dietician & it is not worth going. If the dietician has celiac or gluten intolerance then they can help. I've lost faith in most.

small intestine cancer does happen but it is still rare. It is best to not cheat & continue on a strict gluten-free journey.

Usually blood testing is done on a yearly basis to check to make sure where your level is..... not all doctors have this done.

hth mamaw

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What is a GI?

A gastroenterologist, or gastro-intestinal doctor. (Hence the GI)

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It really depends on your GI. A large number of GI doctors will diagnose you, recommend the nutritionist and then send you off to fend for yourself.

The thing is, the follow-up is almost as crucial as the diagnosis.

I went to my first Celiac support group meeting, in Napa, CA and there was an exceptional doctor who spoke and shared some key points.

1. You need to know which vitamins you are low in and take supplements in the right dosage.

- She covered all possible types of vitamin deficiencies and their symptoms.

2. You may need guidance in finding out if you have an accompanying problem - like a hypo or hyperthyrodism, microscopic colitis and so on.

3. Any other allergies.. Finding out what these are and treating them accordingly.

4. The possibility of leaky gut or candida.

5. Exercise! <--- I'm still working on that one :P

- A good exercise program is also crucial.. Motivation, even more crucial *lol*

If you'd like, I can provide her name and email. She was VERY informative. I'm looking forward to her opening up her new practice, so she can be my new follow-up doc!

I hope this kind of helps. Oh! And ask your GI and then any possible Nutritionist how familiar they are with follow-up with Celiac Disease. A good way to see if you have a good Nutritionist.. just ask them the following question, What gluten-free foods they would recommend, in order to retain the needed amounts of vitamins normally found in gluten containing foods? A good nutritionist should be able to not only provide a list of those foods, but know them right off the bat. If he/she hands you a bag of nuts and tells you to eat them for calorie intake - RUN!

Good luck =)

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Since being diagnosed 7 months ago I felt like I was left to fend for myself. My GI doctor refused to monitor me or do periodic testing (which I felt I needed because I don't react to small amounts of gluten). I was sent to a dietitian which didn't have a clue!!! I felt alone and felt like there should be professionials to guide me.

This site provided my knowledge. I have read books, this site routinely, etc. But I still wanted a "professional." I found a new GI doctor and he is absolutely wonderful. Not only does he listen to me but is willing to work with me. He is very knowledgable about celiac and even a speaker at the Celiac Meeting tonite!!! I also found a chiropractor that was knowledgable about celiac. Now I feel like I'm armed to protect my health!!!

I went thru numerous doctors before I found someone to work with me. If you feel you need additional "professional" help, keep looking until you find what you want - it is worth it!!!

Jennifer

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Thank you guys, I'm going to see about getting a reference to a GI from my regular doctor. I'm sure he must know someone, because that's the same kind of person you go to for acid reflux right? (my mom has that)

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If you'd like, I can provide her name and email. She was VERY informative. I'm looking forward to her opening up her new practice, so she can be my new follow-up doc!

Does she have a website you can send me?

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Went to a nutritionist/dietician today. Eh. After talking to me for about 2 minutes she said I probably knew more about it than her. True. At least she was nice. She told me I could take a multi-vitamin, but I wasn't really missing things from my diet...unless I went carb free. But I'm not.

She did give me two good things. One was a print-out of websites I could go to to buy gluten free foods, and the other was a 58 page book published by Celiac Disease foundation. It has good stuff in it! Easy to read, etc. You can probably get it on their website: www.celiac.org

Seems to me the best solution is read, read, read. Get the newest books you can, though. I have one that is five years old and have found some inconsistencies with the latest research.

That and eat a balanced diet.

Cheers.

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Honestly you can learn more on here & other sites on your own than most dieticians can share with you .Some insurances will not pay for the dietician & it is not worth going. If the dietician has celiac or gluten intolerance then they can help. I've lost faith in most.

small intestine cancer does happen but it is still rare. It is best to not cheat & continue on a strict gluten-free journey.

Usually blood testing is done on a yearly basis to check to make sure where your level is..... not all doctors have this done.

hth mamaw

Yes we went to a dietitian once our son was diagnosed and she was not helpful. She said she had been gluten-free for 14 years so I thought she would be of great help. But some of the items that she told us were safe we have had reactions to. Between her and another aquaintence I have met it seems that the ones who have had been gluten-free for a while end up giving you old information. Things that are now considered gluten-free but weren't before (like vinegar) and particular products that used to be gluten-free but aren't now. I agree with the comment that this is really a good place to find out about up-to-date information on what is safe to eat. Ingredients can change or the source of natural flavors (a potential hidden source of gluten) has been switched within a companies products so if you have a question check here and check with the manufacturer. Good luck.

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It really depends on your GI. A large number of GI doctors will diagnose you, recommend the nutritionist and then send you off to fend for yourself.

The thing is, the follow-up is almost as crucial as the diagnosis.

I went to my first Celiac support group meeting, in Napa, CA and there was an exceptional doctor who spoke and shared some key points.

1. You need to know which vitamins you are low in and take supplements in the right dosage.

- She covered all possible types of vitamin deficiencies and their symptoms.

2. You may need guidance in finding out if you have an accompanying problem - like a hypo or hyperthyrodism, microscopic colitis and so on.

3. Any other allergies.. Finding out what these are and treating them accordingly.

4. The possibility of leaky gut or candida.

5. Exercise! <--- I'm still working on that one :P

- A good exercise program is also crucial.. Motivation, even more crucial *lol*

If you'd like, I can provide her name and email. She was VERY informative. I'm looking forward to her opening up her new practice, so she can be my new follow-up doc!

I hope this kind of helps. Oh! And ask your GI and then any possible Nutritionist how familiar they are with follow-up with Celiac Disease. A good way to see if you have a good Nutritionist.. just ask them the following question, What gluten-free foods they would recommend, in order to retain the needed amounts of vitamins normally found in gluten containing foods? A good nutritionist should be able to not only provide a list of those foods, but know them right off the bat. If he/she hands you a bag of nuts and tells you to eat them for calorie intake - RUN!

Good luck =)

This is exactly the kind of information I am looking for. What deficiencies I need to check for and what other complications I need to be on the lookout for. If you or anyone else could point me in the direction of some specific resources I'd love it. Thank you.

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Went to a nutritionist/dietician today. Eh. After talking to me for about 2 minutes she said I probably knew more about it than her. True. At least she was nice. She told me I could take a multi-vitamin, but I wasn't really missing things from my diet...unless I went carb free. But I'm not.

I have heard the same thing from many many celiac sprue friends. It is next to impossible to find a dietician that knows much if anything about glutten free diets. I even had one friend go to a dietician who told her to eat a lot of "whole grains." Good grief!!

Before spending the time or money on a dietician call first and ask questions. Find out how much they know about celiac sprue and gluten free diets.

I still have not found a dietician here (I live in Hampton Roads Virginia). It would be so helpful to know what my diet is lacking in. I know I'm probably not eating the most well-balanced diet since I've been gluten and wheat free.

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[

Hi,

I was diagnosed with Celiac in Jan. 2008 after over 10 years of suffering. I went to a dietician too, but she didn't tell me anything new than what I found online on my own. My Doc has me tested one a year to see if my numbers are dropping. That means that my intestines are healing and I am absorbing nutrients. You really should see a specialist if you do not feel like you are getting the answers you want from your doc. If he/she is willing to send you, than take advantage of it. Hope this helps. God Bless!!

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I've been trying my best to live gluten-free since Nov 07. My doctor considers the matter resolved since trying a gluten-free diet, and honestly he hasn't endeavored to learn anything more about celiac or gluten. I've been pretty much on my own.

What I want to know is, are there specific kinds of tests a celiac should get regularly? Is it worth it to spend money on a Dietitian? I would imagine that damage to the gut causes increased risk of colon cancer, so what about that?

Can anyone think of anything? I'd like to run them by my doctor because he's always willing to recommend me to someone if he thinks I need it.

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It really depends on your GI. A large number of GI doctors will diagnose you, recommend the nutritionist and then send you off to fend for yourself.

The thing is, the follow-up is almost as crucial as the diagnosis.

I went to my first Celiac support group meeting, in Napa, CA and there was an exceptional doctor who spoke and shared some key points.

1. You need to know which vitamins you are low in and take supplements in the right dosage.

- She covered all possible types of vitamin deficiencies and their symptoms.

2. You may need guidance in finding out if you have an accompanying problem - like a hypo or hyperthyrodism, microscopic colitis and so on.

3. Any other allergies.. Finding out what these are and treating them accordingly.

4. The possibility of leaky gut or candida.

5. Exercise! <--- I'm still working on that one :P

- A good exercise program is also crucial.. Motivation, even more crucial *lol*

If you'd like, I can provide her name and email. She was VERY informative. I'm looking forward to her opening up her new practice, so she can be my new follow-up doc!

I hope this kind of helps. Oh! And ask your GI and then any possible Nutritionist how familiar they are with follow-up with Celiac Disease. A good way to see if you have a good Nutritionist.. just ask them the following question, What gluten-free foods they would recommend, in order to retain the needed amounts of vitamins normally found in gluten containing foods? A good nutritionist should be able to not only provide a list of those foods, but know them right off the bat. If he/she hands you a bag of nuts and tells you to eat them for calorie intake - RUN!

Good luck =)

Hi,

Could I get the name and email of this dr. I'd like to ask her a few questions because all this information is extremely informative. I hope she can help me out.

Thank you

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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