Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dietitian


healinginprogress

Recommended Posts

healinginprogress Enthusiast

So, when I got the positive blood test results my doctor referred me to a dietitian. When they called me, they said I had to attend a "Celiac Group" and then from there you get an appointment or referral to a dietitian or something like that, not sure I quite understood.

Anyways, the group was at 845 this morning...I had some symptoms yesterday and was very very tired, and didn't want to go sit through 3hrs of stuff I already know.

I've done a fair bit of research, plus, I generally come here if I have a question that I can't seem to find the answer to. I also know quite a bit about eating healthy, calories, nutrients, vitamins, etc. because of my background in kinesiology/health/fitness.

I'm not saying I'm a know-it-all, or that I know it all...I'm definitely still learning each and every day, and it is definitely a process. I'm just wondering if I would benefit at all from seeing a dietitian...or I guess asking when the next group is and then possibly getting to see a dietitian? Thoughts, personal experiences?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



sa1937 Community Regular

My doctor suggested it and I declined. I told him I was afraid I'd know more than she does...he probably figures I'm a smart ass. :P If she isn't familiar with celiac, I thought I'd probably be the recipient of ancient info, which was not up-to-date and besides, any questions I've had, I can get answers to right here or by picking up a book or googling a product, which is how I ended up joining this forum.

healinginprogress Enthusiast

My doctor suggested it and I declined. I told him I was afraid I'd know more than she does...he probably figures I'm a smart ass. :P If she isn't familiar with celiac, I thought I'd probably be the recipient of ancient info, which was not up-to-date and besides, any questions I've had, I can get answers to right here or by picking up a book or googling a product, which is how I ended up joining this forum.

Ok, good, that's what I thought, too!!! So glad I got some extra rest :) When I went on the Celiac Tour of Planet Organic (health food store) the lady giving it was a member of the celiac association and she was impressed with how much I knew and that was just a week in. I think this forum and googling are pretty fantastic resources :) :) :)

Strawberry-Jam Enthusiast

When I went to a dietician, she told me that I pretty much knew everything she was going to tell me anyway, so there wasn't *too* much for us to talk about. That was because of this site. :) She did tell me to eat more protein, but my mama tells me that every day...

But I went, and am going again once more, because it is practically free with my (dad's) insurance, which is running out in May, so I'm getting everything I can done before I get cut off.

Using this site and other reliable resources should be just fine for ya.

MNMAC Apprentice

I was referred to a dietitian by my doctor and it was no help to me, everything she told me I already knew from this site and other research I have done. I was actually suprised how little she knew but that was just my experience, it may be helpful for others.

luvs2eat Collaborator

By the time I got to a dietician, she told me I knew way more than I did about Celiac... I'd done tons of research on the 'net.

A nutritionist might be something else entirely...

cap6 Enthusiast

my dietitian gave me sheets she had run off from the internet. Not at all what I was looking for!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Luddie Newbie

my dietitian gave me sheets she had run off from the internet. Not at all what I was looking for!

Hi all who are commenting on this topic:

I have to say that having a nutritionist/dietician who KNOWS A LOT ABOUT CELIAC DISEASEcan be extremely helpful. My doc has one on staff and I can email her (or him, for that matter) to bounce ideas, or to ask questions. I also attend the classes his office provides, including one on Celiac Disease, and since there are many people there, it sort of becomes a "live" forum. Although I don't learn many new things, I always come away feeling a bit more secure in what I'm doing. So, I guess if you try it and don't like it and it doesn't seem helpful, don't go. But you might find it helpful. I'd definitely give it a try. Who knows, you might pass on some of what you have found out which will help others. :rolleyes:

Luddie

T.H. Community Regular

I had two Dieticians, one recommended by my first GI (hereafter known as 'clueless unhelpful idiot') and one recommended by my second GI, who knows tons about Celiac Disease, and made sure to pass on a lot of that knowledge to the Dietician...who also had Celiac Disease herself so really knew her stuff.

The first one was sweet, but didn't tell me much more than I knew, and definitely nothing I couldn't have figured out on my own. She basically told me what to avoid (but not as thorough a list as I found here), and what gluten-free foods might taste good (which I could have also found out here, or by trying it on my own). A few on-line resources, and some vitamins to take, which ended up being no good for me because of my allergies, which she didn't help out too much with, as she didn't know about them ahead of time.

My second Dietician had more to offer. She asked in advance for lists of any foods I had trouble with. The GI got permission from me to send her the results of my food allergy tests, so when I got there, she had a diet worked out that would take into account my food allergies AND celiac disease. That was tricky for me to figure out on my own, as I was reacting to a large number of foods, so it was actually of use. She also had a list of every store in town that carried gluten-free goods, and exactly what gluten-free foods they had. She had a huge list of stores that sold gluten-free products on-line. She had basic gluten-free recipes, and places to look for recipes.

And she actually did help me with something. For example, I was having trouble with corn, and she was the one who told me to change my salt, as all iodized salt has corn to stabilize the iodine. I don't know that I would have even thought to look for that for some time if not for her. She had a list of dairy free things to have at first, too, for the first 6 months of the diet so I would heal better. Very nice.

Because of her own food issues, she is very aware of allergies and gluten issues, and works with me to try and find a completely safe, nutritional diet. She hunts down safe supplements. She listens well when I am having food issues, she tries to think of new foods, and find farms that have food that might be safe for me.

However, even with that? I still end up teaching her things every time I go. :)

That said - she seems like a rare breed of dietician. Talking with others in my town, most of the dieticians here do not do this, or know very little about Celiac Disease OR allergies, or tell you almost nothing you couldn't find out on your own with a little effort. So I'd say if you look around and one that your local Celiac group recommends, she/he might be worth your while. But otherwise...meh, might not be worth it.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,191
    • Most Online (within 30 mins)
      7,748

    teresa1955
    Newest Member
    teresa1955
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...