Jump to content
  • 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

Some Advice Needed


Celiac's Husband

Recommended Posts

Celiac's Husband Newbie

Hello All,

I Have been reading this board the last month. This is my first Post,I hope I do it right. As my name states I am the husband of a celiac. My darling wife was diagnosed about 2 months ago. Here is how it went down. She had surgery a year ago and prior was told her blood count was very low. After test is was determined that she was anemic. She has had GERD for about 10 years and has an awesome Gastro doctor. At her yearly examine she talked with the Gastro about her anemia. The Gastro did a colonoscopy looking for blood loss (turned out ok). She then did an endoscopy looking for a bleeding ulcer(no ulcer). During the endoscopy she tested for Celiac's. Came back positive. We are very greatful it was discovered. My wife has been gluten free and I have noticed as well as her a better quality of life(not as tired, better G.I. not as stressed, no more tingling,neuro problems). Here is my question. My wife and I have learned alot about Celiac's from this and other boards. At her follow up appointment it seems like we educated the Gastro doctor more than we got answers. We still have many questions(you all have been very helpful with what we have read on this board) but should we seek the advice of a dietician to help guide us with the diease management? We love the Gastro but are looking for someone who knows Celiacs inside and out. Any suggestions are welcomed.


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



Celiac.com Sponsor (A8-M):



frenchiemama Collaborator

Is she struggling with the diet, or feeling like she isn't eating a balanced diet? If not, a dietitian probably wouldn't be worthwhile. I recently went to one, who is experienced with celiac and works with local support groups, because of my other food problems. While I wouldn't say that it was a wasted effort, I really didn't learn anything that I didn't already know from my own research. The main benefit for me was just to have someone confirm that I was doing the right things.

Something that might be of more benefit would be to join a local support group. That way you guys can get help and support for gluten-free living in your own community.

CarlaB Enthusiast

Husband, you will learn more here than anywhere! You would have to find a dietician who knows about celiac, most of them are as educated as her doctor. Just hang around a while and ask questions ... it gets easier.

Welcome!! Diagnosis is usually a blessing for us all, and the fact that it's controllable by diet is a bonus, even if it's not easy!

linds Apprentice

I went to a dietician before the diagnosis and she was the one who suggested to force the doc to do a celiac test. she was a lot of help for me when i was first starting but then again she literally had just come from a week long confrence on celiac. :)

Celiac's Husband Newbie
Husband, you will learn more here than anywhere! You would have to find a dietician who knows about celiac, most of them are as educated as her doctor. Just hang around a while and ask questions ... it gets easier.

Welcome!! Diagnosis is usually a blessing for us all, and the fact that it's controllable by diet is a bonus, even if it's not easy!

Frenchie & Carla,

Thanks for the advice. It is greatly appreciated. She is not struggling with the diet. She is doing very well and extremely comitted. We just want to make sure we are doing all the right things. Like I said it seems like we educated the Gastro (I.E. salad dressings, no licorice). We are not use to this. You all are a blessing and should probably have MD Degrees LOL.

Thanks

I went to a dietician before the diagnosis and she was the one who suggested to force the doc to do a celiac test. she was a lot of help for me when i was first starting but then again she literally had just come from a week long confrence on celiac. :)

Thanks Linds

CarlaB Enthusiast
Frenchie & Carla,

Thanks for the advice. It is greatly appreciated. She is not struggling with the diet. She is doing very well and extremely comitted. We just want to make sure we are doing all the right things. Like I said it seems like we educated the Gastro (I.E. salad dressings, no licorice). We are not use to this. You all are a blessing and should probably have MD Degrees LOL.

Thanks

LOL

As far as salad dressings, all Kraft products will clearly label whether they have gluten, so you can read their labels and feel safe as long as it does not say wheat, oats, barley or rye ... or maybe you already knew that. B)

Canadian Karen Community Regular

The general consensus here from many who have posted after they went to a dietician is that it was a waste of money. Most of the time, what they will do is take a page out of a binder that lists the basics of what not to have, but not by any means going into detail about toiletries, medications, glue on envelopes, etc. They will also give you a few websites to use for reference then that's it, end of consultation.

What I learned, I learned from here. The dietician I went to see didn't touch on anything to do with cross-contamination, hidden sources, etc. I didn't even know until I came here that I should get my own toaster!

Oh, by the way, welcome, and your wife is lucky to have you!

Karen


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



Celiac.com Sponsor (A8-M):



mouse Enthusiast

When I got diagnosed, my GP said that if I really wanted to get better, then I should do the research myself and not see a dietician. When I was waiting for one of my many yearly blood tests, someone told me that two of her neighbors had been diagnosed with Celiac. One learned what to eat by himself and is doing great. The other went to a dietician to learn and she is not doing well at all. This is just my opinion and you really have to decide for yourself what is right for both of you.

BTW, welcome to the forum and your wife is lucky to have such a caring husband. Some on here are not so fortunate.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Kathleen Mostek replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      26

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      dairy? gluten in chocolates?? calcium?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      dairy? gluten in chocolates?? calcium?

    4. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      dairy? gluten in chocolates?? calcium?

    5. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      15

      Related issues

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,486
    • Most Online (within 30 mins)
      7,748

    Maureen vanheusen
    Newest Member
    Maureen vanheusen
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Kathleen Mostek
      I have had low Vit D for years before my Celiac diagnosis. I recommend Nature Made, it’s everywhere. GET THE TABLET, not the oil based capsule. The soy oil in the capsules give me diarrhea!
    • catnapt
      ack!! seriously???  just googled all the different things I ate Milky Way: Contains barley malt and is not gluten-free. Krackel: Contains barley malt.   good grief 
    • catnapt
      oh I forgot I also had some Doritos (those are corn chips aren't they?)
    • catnapt
      I'm not yet diagnosed, seeing a GI March 4th I'm keeping a food diary and yesterday I went to play cards at a friends house and ate things I don't ordinarily eat- mainly a bunch of those mini chocolates that ppl typically give out at Halloween (hershey kisses, mr goodbar. milkway, snickers) I ate er... too many.  also had a tiny bit of some kind of creamy salad dressing on raw veggies.  I had SOO much pain last night in my feet- burning, numbness and pain in my feet and ankles, and a bit less so in my knees. Lasted for hours, kept me up half the night at the same time, the trouble with constipation that I've had ever since being put on the chlorthalidone, has started to improve but then gets worse again...and I can't figure out what is making it worse and what is helping it   it is like my entire digestive tract just shuts down.   Before finding out that I may have a renal calcium leak, I did not use fortified plant milks and did not consume dairy. Since being told to consume 1000-1200 mgs of calcium from food per day- I switched to fortified soy and almond milk and added some non fat or low fat plain yogurt (It is very hard to get that much  calcium from other sources without eating an enormous amt of food- I'm 70 and just can't eat that much. I'm already seeing my weight creep up which is disturbing)   I am seeing that ppl with celiac can have issues with dairy- what would those issues be? Did I get glutened yesterday unknowingly or does chocolate or that tiny bit of salad dressing I had have gluten in it?   My feet are fine this morning! thank goodness but the pain was excruciating last night.   I don't know what to do.  I am thinking that I should ditch the dairy  (which I never really wanted to consume in the first place) and maybe anything with calcium carbonate in it (that is very constipating for me) not only has my GI system slowed down, my stools are strange-  round and often float. This so so different from what used to be my normal (on the Bristol stool score it was in the ideal range) I will go several times a day - these meatball sized round floaters I don't know if I'm still dealing with the after affects of the chlorthalidone (which has a very long half life- my last dose of that was Feb 9th or 11th - I'll have to look that up but I think it's been almost a week.   I just want all this pain and discomfort to stop. but I don't know where it's coming from. those 12 days on gluten have just wrecked my whole system it seems.   any ideas what I might do to help things get back to normal?
    • Jmartes71
      No they just said stop all supplements two weeks before.Its so frustrating im not at all happy with my "care team",because im not being seen for my sibo infact my appointment was dropped, I even asked about it and they said Dr prescribed you meds and I stated yes but I again had a reaction.I feel bothersome. I need to find another gi but its useless because its going to be same thing around here.i just feel lost and in tbe medical file they are writing what ever and its really not ok. In fact i dont want to go unless they record the conversation. Yes its that bad.im only having  care and concern for my ms whose Not part of the same health association that pcp and gi are with.I will have to look into changing to another. Mayo clinic is great but its the celiac, sibo, ect and all related issues that need addressed but current " careteam says call when needed. No plans of scheduled dates
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.