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. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

    3. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    4. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    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

    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
×
×
  • 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.