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Nicolevh

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Nicolevh Newbie
Nicolevh
Posted

First off, I have to say how grateful I am to have found this website. For a while now I have been struggling to try and find an answer for what has been

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Menic Apprentice
Menic
Posted

I recommend The Gluten-Free Bible by Jax Peters Lowell. It contains personal stories, tips, recipes, and is generally a good read.

Lisa Mentor
Lisa
Posted

Against the Grain, by Dr. Peter Greene is one of the best books out there....and welcome!

Celtic Queen Explorer
Celtic Queen
Posted

The First Year: Gluten Free and Celiac Disease was a good one.

IrishHeart Veteran
IrishHeart
Posted

Living Gluten Free for Dummies by Danna Korn

The Jules Shepard book that Celtic Queen mentions in the post prior to mine. :)

and

Recognizing Celiac Disease by Cleo J. Libonati, RN

Nicolevh Newbie
Nicolevh
Posted
  • Author

Thank you all for the great and prompt suggestions. I just ordered a few of them off Amazon. :)

IrishHeart Veteran
IrishHeart
Posted

Thank you all for the great and prompt suggestions. I just ordered a few of them off Amazon. :)

For more good info, here is an amazing collection of medical articles someone has generously posted on the internet called the Gluten File. Tons of information about celiac and the various disorders and symptoms associated with it. I researched my brains out trying to figure out what was going on inside me for over 3 years, so I have lots of info bookmarked, but this person put it all in one place! Happy Reading. :)

Also,

You mention having "HS" in your post. Are you referring to Hashimoto's thyroiditis?

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Nicolevh Newbie
Nicolevh
Posted
  • Author

For more good info, here is an amazing collection of medical articles someone has generously posted on the internet called the Gluten File. Tons of information about celiac and the various disorders and symptoms associated with it. I researched my brains out trying to figure out what was going on inside me for over 3 years, so I have lots of info bookmarked, but this person put it all in one place! Happy Reading. :)

Also,

You mention having "HS" in your post. Are you referring to Hashimoto's thyroiditis?

Open Original Shared Link

Yes I will definitely check these articles out! I was using the HS abbreviation for hidradenitis suppurativa- the skin disease where I get huge skin infections mostly on my upper thighs that have to be lanced and drained. Admittedly, I could be using the abbreviation incorrectly so please correct me if I am.

IrishHeart Veteran
IrishHeart
Posted

Yes I will definitely check these articles out! I was using the HS abbreviation for hidradenitis suppurativa- the skin disease where I get huge skin infections mostly on my upper thighs that have to be lanced and drained. Admittedly, I could be using the abbreviation incorrectly so please correct me if I am.

Well, I was unfamiliar with HS until this moment, so I took some time to read about it. I am so sorry you suffer this condition (it sounds painful) and I hope you get relief from going gluten-free. I did not know it was related to celiac, so thank you for enlightening me.

Also, WELCOME to the Forum!! :)

Best wishes,

Irish

Nicolevh Newbie
Nicolevh
Posted
  • Author

Well, I was unfamiliar with HS until this moment, so I took some time to read about it. I am so sorry you suffer this condition (it sounds painful) and I hope you get relief from going gluten-free. I did not know it was related to celiac, so thank you for enlightening me.

Also, WELCOME to the Forum!! :)

Best wishes,

Irish

I didn't know of a connection either until I saw some of the topics on the board with a lot of people talking about having both. Until reading them I didn't know that other people even had HS to the degree that I do. I certainly don't like to hear of other people suffering, but this board has been so helpful to me. My Mom was just diagnosed with stage 4 lung cancer (which is why we are going on her dream cruise for the holidays) so most of the family focus (including mine) has primarily been on her and her health. Feeling so sick for the past few months and handling it by myself has been difficult. Seeing that there are others on here with similar problems has really helped me to feel not so alone. So, thank you for the kind welcome and for everyone to sharing their stories- they help more than you may know.

Nicole

IrishHeart Veteran
IrishHeart
Posted

I didn't know of a connection either until I saw some of the topics on the board with a lot of people talking about having both. Until reading them I didn't know that other people even had HS to the degree that I do. I certainly don't like to hear of other people suffering, but this board has been so helpful to me. My Mom was just diagnosed with stage 4 lung cancer (which is why we are going on her dream cruise for the holidays) so most of the family focus (including mine) has primarily been on her and her health. Feeling so sick for the past few months and handling it by myself has been difficult. Seeing that there are others on here with similar problems has really helped me to feel not so alone. So, thank you for the kind welcome and for everyone to sharing their stories- they help more than you may know.

Nicole

Oh hon, sorry to hear about your Mom. I hope the cruise is everything she wants and more!!!

It's likely the stress of all this has made your celiac symptoms trigger.

Mine triggered when my Dad was very ill and I was traveling back and forth to my parents' house 4 hours away for many months to help them. When he died in Feb '08, that's when I got VERY ILL and burst into burning neuropathic pain. Although I suffered symptoms most of my life, it got REALLY bad --and I developed dozens of symptoms that really got my attention. However, it took another 3 years before I figured it out myself. No doctors could see it. <_<

It's good you have a DX now, so you can recover and get on the road to good health!

I know the focus is on your Mom, but make sure you take care of YOU, too! You are in recovery now. Take a good gluten-free vitamin. Did your doctor test you for vitamin levels, etc?

Did you inform the cruise management that you require gluten-free meals?

Is there anything else we can help you with?

IH

Celtic Queen Explorer
Celtic Queen
Posted
I know the focus is on your Mom, but make sure you take care of YOU, too! You are in recovery now. Take a good gluten-free vitamin. Did your doctor test you for vitamin levels, etc?

I second what Irish said. You can't take care of your mom if you don't take care of yourself too.

cap6 Enthusiast
cap6
Posted

Danna Korn has a great sense of humor. When you're new at this and feeling despair she can bring a chuckle along with loits of good info :D

Nicolevh Newbie
Nicolevh
Posted
  • Author

Oh hon, sorry to hear about your Mom. I hope the cruise is everything she wants and more!!!

It's likely the stress of all this has made your celiac symptoms trigger.

Mine triggered when my Dad was very ill and I was traveling back and forth to my parents' house 4 hours away for many months to help them. When he died in Feb '08, that's when I got VERY ILL and burst into burning neuropathic pain. Although I suffered symptoms most of my life, it got REALLY bad --and I developed dozens of symptoms that really got my attention. However, it took another 3 years before I figured it out myself. No doctors could see it. <_<

It's good you have a DX now, so you can recover and get on the road to good health!

I know the focus is on your Mom, but make sure you take care of YOU, too! You are in recovery now. Take a good gluten-free vitamin. Did your doctor test you for vitamin levels, etc?

Did you inform the cruise management that you require gluten-free meals?

Is there anything else we can help you with?

IH

Oh I have no doubt the emotional stress of my Mom's diagnosis sent this into overdrive. I just got so frustrated when doctors kept telling me it was solely related to stress but I still felt there there was an underlying factor. I am thankful I have found an answer after just a few months as opposed to years like it was for you. I did not inform cruise management about needing gluten free meals. I have never been on a cruise before but when I was trying to set up all the accommodations my Mom needs they just kept telling me they would take care of all of it once we got there. I know this will make me sound really snobby but it is her dream trip so we did it up right- got the best suites on the ship and have a private butler and can dine in any restaurant at any time. You are right though they may not have those accommodations onboard so I will call her tomorrow. I did pack gluten free crackers and terra chips in my bag so I would have snacks in the room and not give into the 24 hour pizza delivery!

Asking for help and putting myself first is something I have always struggled with and I know I need to be doing that now. I did talk to my family for a long time about it the other night and they are all onboard and very supportive- my brothers even bought me gluten free noodles for the weekly Italian dinner. It is easier now having something tangible to go off of. Before I just felt like I was whining; she has cancer and I couldn't justify how I was feeling to that. This board helps put it into perspective for me- no I am not just being a baby, it really does cause serious problems and can make you feel THAT bad. I know there will be ups and downs as I make this huge lifestyle change but for the time being I feel really good about it. I am grateful for this board for giving me the perspective I needed, and for my family for listening and understanding. It's really been one of the best weeks I have had in a long time!

IrishHeart Veteran
IrishHeart
Posted

Nicole,

you absolutely have to tell the cruise company IN ADVANCE that you require gluten-free meals. You can't risk dosing yourself with gluten anymore. They will take care of you!

You have an autoimmune disease. They will accommodate you. The people on here have been on cruises and they did fine with it.

And just having gluten-free noodles for the family dinner will not protect you from cross contamination. They can't be cooked in the same pot with wheat pasta or put through the same colander. Sorry, kiddo, but you have some things to learn about cross contamination--we call it "CC" on here.

But do not panic; you can learn it all and adapt. :)

Here is an great list of suggestions on how to avoid CC:

Open Original Shared Link

DO read the Danna Korn book and have your family read it too! It will help you all adjust.

Not sure they want to hear it, but YOUR FAMILY needs to be tested, too. This is an inherited, genetic disease. It is nothing to mess with or ignore.

I know what you mean about putting people first and not wanting to be a "burden" or whine. I get that so well. :)

But, sweetie, what you have is the REAL DEAL. It is a potentially fatal disease. It can cause numerous horrible symptoms if left undiagnosed and untreated. So YOU have to take charge of your health right now and your family needs to know this thing is genetic. The fact that Crohn's runs in your family (mine, too) is no coincidence.

Did your doctor tell you any of this?? No, they never do...sigh....

The good news is...it IS treatable. :) And soon, you will feel better and better. :)

MJ-S Contributor
MJ-S
Posted

I recommend "Real Life with Celiac Disease". It's co-written by a dietician with celiac disease and a physician.

I also read Dr. Green's book "Celiac Disease: A Hidden Epidemic" (great primer, some info slightly out of date) and a few others, but after the initial learning curve ends, Real Life is the one I keep coming back to. It's a wonderful nutritional reference guide.

Nicolevh Newbie
Nicolevh
Posted
  • Author

Nicole,

you absolutely have to tell the cruise company IN ADVANCE that you require gluten-free meals. You can't risk dosing yourself with gluten anymore. They will take care of you!

You have an autoimmune disease. They will accommodate you. The people on here have been on cruises and they did fine with it.

And just having gluten-free noodles for the family dinner will not protect you from cross contamination. They can't be cooked in the same pot with wheat pasta or put through the same colander. Sorry, kiddo, but you have some things to learn about cross contamination--we call it "CC" on here.

But do not panic; you can learn it all and adapt. :)

Here is an great list of suggestions on how to avoid CC:

Open Original Shared Link

DO read the Danna Korn book and have your family read it too! It will help you all adjust.

Not sure they want to hear it, but YOUR FAMILY needs to be tested, too. This is an inherited, genetic disease. It is nothing to mess with or ignore.

I know what you mean about putting people first and not wanting to be a "burden" or whine. I get that so well. :)

But, sweetie, what you have is the REAL DEAL. It is a potentially fatal disease. It can cause numerous horrible symptoms if left undiagnosed and untreated. So YOU have to take charge of your health right now and your family needs to know this thing is genetic. The fact that Crohn's runs in your family (mine, too) is no coincidence.

Did your doctor tell you any of this?? No, they never do...sigh....

The good news is...it IS treatable. :) And soon, you will feel better and better. :)

Of course the doctor told me nothing. They told me my blood test was positive for celiac while I was on the table about to go under the anesthesia and that was all they said. I know from this board that cross contamination is a big factor- I was just more touched that my brothers thought enough about what I was saying to make that gesture (it's brothers- they are not the most considerate people on the planet). :) I don't live with my family, so cross contamination will be much easier to control in my own home. Maybe I can travel with an extra pot and colander in my car for family dinner nights. :) With leaving town and trying to finish my finals there just hasn't been time to really get into all the small details yet. I am just starting with the biggest thing I can control- not eating foods with gluten in them. Once I get home I know I will need to replace a lot of my cooking equipment. I'm looking at it as a marathon and not a sprint; I will have better results if I pace myself than if I try to crash course it.

I did call the cruise line and told them of my dietary needs which they said they would accommodate so thank you for that wonderful suggestion. You are right about the genetic link. Everyone in my family have been long time sufferers of the dreaded "sensitive stomach" so I wouldn't be surprised if some of them also had celiac. In particular, my younger brother had symptoms similar to mine about a year ago. They diagnosed him with irritable bowel (which pretty much means nothing) and he still struggles with it. Maybe I can get him to go on this journey with me!

So I'm off on my trip tomorrow morning so I will be off the board for a few weeks. I will let you know how it all goes!

Happy holidays!

Nicole

IrishHeart Veteran
IrishHeart
Posted

Good for you.

One step at a time. This is a learning process. And with all you have on your plate right now, I would say you are doing a fantastic job, hon! You had to accept this DX, plan a cruise and complete the semester. As a former college Prof., I know the pressure you are under!

Do talk with your brothers about it and tell them what you have learned about the genetic aspect. Yes, irritable bowel--we ALL heard that. :rolleyes: The question is WHY is it irritable?? My guess? GLUTEN!

And yes, they were very sweet to get you the gluten-free noodles. ;)

I am glad you took my advice about the cruise meals. ;)

Have a good time, hon--and DO tell us all about it when you return.!! Happy holidays!!

Cheers,

IH

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      Son's legs shaking

      By knitty kitty · Posted

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