21 replies to this topic

[CaliSparrow]

I accidentally hit post so hopefully this will be approved by the moderator too

Anyway, good luck to you on this very tricky journey! Thanks to all the encouraging members here.

Blessings,

Cali

[Hala]

Thanks so much again for the help and support guys, it's such a relief to know there are others out there in the world with the same experiences as me! I will definitely take up your advice (except I'm sorry, but I really won't eat meat! I get a lot of protein from other sources though like beans and buckwheat and these fresubin drinks).

I had a bit of a stressful day today! I got a call from the surgery this morning saying I had been booked in for an urgent blood test that morning, but no one knew why! So I turned up at the surgery very confused and asked if I could see my gp before the blood test, but they said he wasn't in and they would get him to ring me.

So I went for the blood test (for which they had no referral notes) and left the surgery feeling very confused! Just as I was leaving I got a call from the gp. He said that the nutritional supplement drinks I have been surprised could cause my malnutritioned body to go into shock and cause my livers and kidneys to fail, potentially resulting in death, so they had to monitor my blood levels to test for this :S. He then said that I have been prescribed high-dose micronutrient/vitamin tablets to try and combat liver/kidney failure and to return to the surgery to pick them up. I hadn't been told any of this, and no-one at the surgery seemed to know what was going on!

Anyway, I now have a bag full of vitamins/nutrient tablets that I have to take a ridiculous amount of several times a day along with these nutritional drinks. I'm really quite scared now, especially considering these drinks might be really harming me!

On the plus side, these last few days I've felt quite a lot better, although have been experiencing annoying 'C' and bloating, but less of the pain and headaches etc. .
I'm still not really happy with the dietitian (especially now after she didn't warn me in advance about the blood tests or extra nutrient pills!) but I'll see how next week's appointment goes...

[GottaSki]

Oh Hannah-

So sorry your experience with the nutritionist has not been good. I only saw one for a single visit after my Celiac diagnosis - she - affiliated with a major celiac center was of no help to me. I had already learned the "helpful" facts she knew. Live and keep learning while you use the knowledge that "some" of these professionals can provide.

If you are indeed seeing her next week - make sure you start the conversation with how disappointed that you are that she did not give you the proper information to go with your nutritional drink. If she doesn't apologize and answer YOUR questions...time to replace her. I like to give folks a chance to rise up and prove that a bad appt was an off day for them -- no need to stick with someone if they don't improve when given a second chance.

Glad to hear you are feeling a bit better -- hang out...click a few of the links GFinDC provided and let us know if we can help further.

Oh...my last post wasn't meant to persuade you to eat meat -- just know how hard it can be for a vegetarian to have to consider giving up more and more of their protein sources.

Hang in there

[Hala]

Oh Hannah-

So sorry your experience with the nutritionist has not been good. I only saw one for a single visit after my Celiac diagnosis - she - affiliated with a major celiac center was of no help to me. I had already learned the "helpful" facts she knew. Live and keep learning while you use the knowledge that "some" of these professionals can provide.

If you are indeed seeing her next week - make sure you start the conversation with how disappointed that you are that she did not give you the proper information to go with your nutritional drink. If she doesn't apologize and answer YOUR questions...time to replace her. I like to give folks a chance to rise up and prove that a bad appt was an off day for them -- no need to stick with someone if they don't improve when given a second chance.

Glad to hear you are feeling a bit better -- hang out...click a few of the links GFinDC provided and let us know if we can help further.

Oh...my last post wasn't meant to persuade you to eat meat -- just know how hard it can be for a vegetarian to have to consider giving up more and more of their protein sources.

Hang in there

I managed to get her email address and sent her a long email explaining how upset I was and introducing some new questions. She apologised for me being kept in the dark but skipped over my questions as if she hadn't read them at all... She then said to contact her if I had any more enquiries before our next meeting on wednesday, so I sent her another email with some questions and got an out-of-office reply :/

I'm feeling consistently awful since starting the nutritional drink and micronutrient regime. Fatigued, nauseaus and awful muscle fatigue! It's so frustrating because I was just starting to feel better! I really don't want to continue with the drinks but I know she's going to prescribe me a higher dose when I return...

Thank you so much for being so kind

[eers03]

Hannah~

I am newly diagnosed, and here is what I have learned in the last two months;

1. Call a support group--its so helpful to hear a voice that has been threw some things and had some of the same symptoms that I am sure you have. Its a relief to know one is not alone and that people go on to live happy lives oftentimes.

2. Get an iPhone and download Myfitnesspal (customizable calorie and nutrition tracker), Foodily (recipe ideas that can be preset for gluten free ideas), and SHOPWELL (allows you to scan barcodes and will tell you if the item contains gluten) you have to watch though, sometimes it will err on side of caution and give you a false positive.

3. If you are religious, share what you are going through with some people that can pray with or for you.

4. Be patient. I too tried to accelerate things with a nutritional drink and nearly killed myself with it. My body began going into shock as you mentioned. I haven't had one since. Don't let yourself get dehydrated either.

5. Be a picky reader. Some of the websites, threads, and blogs will terrify a person. Most of it is just noise. Pay attention to YOUR body and YOUR symptoms and keep that two way dialog with your HCP going. If you don't have a celiac specialist, I am told one should have one. I plan to get a referral to one soon.

Sounds like you are on the proactive path like me! Good luck.

[a1956chill]

Hannah~

I am newly diagnosed, and here is what I have learned in the last two months;

1. Call a support group--its so helpful to hear a voice that has been threw some things and had some of the same symptoms that I am sure you have. Its a relief to know one is not alone and that people go on to live happy lives oftentimes.

2. Get an iPhone and download Myfitnesspal (customizable calorie and nutrition tracker), Foodily (recipe ideas that can be preset for gluten free ideas), and SHOPWELL (allows you to scan barcodes and will tell you if the item contains gluten) you have to watch though, sometimes it will err on side of caution and give you a false positive.

3. If you are religious, share what you are going through with some people that can pray with or for you.

4. Be patient. I too tried to accelerate things with a nutritional drink and nearly killed myself with it. My body began going into shock as you mentioned. I haven't had one since. Don't let yourself get dehydrated either.

5. Be a picky reader. Some of the websites, threads, and blogs will terrify a person. Most of it is just noise. Pay attention to YOUR body and YOUR symptoms and keep that two way dialog with your HCP going. If you don't have a celiac specialist, I am told one should have one. I plan to get a referral to one soon.

Sounds like you are on the proactive path like me! Good luck.

if you find a celiac specialist please let me know. I ( as of yet) have not experienced a doctor who I would consider a celiac specialist.

To me,,a specialist is someone who knows more about celiac than I do. Has not happend so far,,,,,,,So I am content in finding a doctor who is willing to run the tests I ask for , who has an open mind, someone that has at least a hint of comprehension as to the daily trial that is my life and who will actually listens to me when I talk .

[dilettantesteph]

Have your carefully checked that nutritional drink for gluten contamination?