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

New To Forum, New To Gluten Sensitivity/casein Sensitivity


AZKat

Recommended Posts

AZKat Newbie

Hello,

I am new to the forum and would like to say Hello! I have been reading the forum for a few weeks, and learned so much already! Now hubby and I are going to go gluten/casein free after getting our Enterolab results on Wednesday. I'm feeling a bit overwhelmed...he wants to start already...I haven't quite adjusted yet.

Anyone have any advice on how quickly to make this change?


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

AzKat--just jump right in and do it. Going a little gluten free doesn't help at all, if you are going to eat any gluten, then you are defeating your purpose. Good luck.

Guest cassidy

It might take a while to get all the gluten out of your life. It is hidden in so many places that if you start now hopefully you will be feeling better in a week or so. Once you get to that feeling better point it really makes all of it worth it and you don't want to go back.

You could start helping your husband and then I would think you would just get into the diet once you don't have any other choices at home. This is a very emotional situation as well. I went through a grieving process and it took a while for me to come to terms with everything. If you need a couple of days, then take them, I can't imagine that would make a difference in the long run and it might make it easier on you now.

I did have a binge day the day before I went gluten-free. We went to a football game where I drank beer and ate pizza. Then we went home and ordered a pizza. I never used to eat like that and I got very sick but it was my farewell to gluten.

I did go gluten-free the day I took my blood test, which was negative. By the time I got the results I was feelilng so much better that I didn't care that the test was negative - I knew there was no way I was eating gluten again.

Good luck!

celiacgirls Apprentice

I'm sure there are many people here who disagree, but consider taking a short period of time to eat the things you will miss.

I planned a week long adjustment period to eat my last regular pizza, bagel, etc., but I noticed after I ate the bagel on day 1 of my binge, that I didn't feel right. I felt bloated. Before my test results, I never noticed any symptoms. I was only tested because of my daughter's results. After I noticed that with the bagel, I haven't intentionally eaten anything with gluten in it so I ended up not doing my binge after all.

CarlaB Enthusiast

Start with the foods that are naturally gluten-free/casein-free -- meat, chicken, fish, eggs, fruit, vegetables, nuts, potatoes, rice. Then build from there. Starting with naturally gluten-free/casein-free will give you stuff you can eat right away while you research what else you want to have.

Download Nini's newbie survival kit ... she has a lot of good information. I'm sure she'll post on this thread, but if she doesn't, look for her under members and click the link in her signature.

tarnalberry Community Regular

There are a couple things I think are important when starting out (and whenever, really)

  • try to stick to whole foods, that are naturally gluten-free
  • make sure you have foods you want to snack on available in your house
  • when you do transition to the diet, remove all the temptations you can from your house
  • accept that you are not just changing a diet, but a habit, and that's *hard*
  • keep on reading this board - lots of friendly and helpful people :)

You'll get to try new foods you hadn't before, and new ways of making things (casein free ranch dip from raw cashews, water, lemon juice, salt, and italian spices, for instance). I find casein harder to eliminate than gluten - I miss it more - but it is what it is.

Welcome!

CarlaB Enthusiast
I find casein harder to eliminate than gluten - I miss it more - but it is what it is.

Welcome!

Me, too!! I have found substitutes for all my "must have" gluten items (except for those stupid fried onions in that green bean casserole for Thanksgiving!! :P ), but replacing dairy is nearly impossible. I'd almost be sick for a few days for a triple organic latte!!!! While I'm at it, cheese sounds good, too!


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor

I have found dairy hard to give up, compared to gluten also. It's a mind set and there will probably be times when you are sorely tempted to cheat.

Take a little bit of time to adjust if you need it and continue reading and learning as much as you can.

Welcome to the forum. :)

par18 Apprentice
Hello,

I am new to the forum and would like to say Hello! I have been reading the forum for a few weeks, and learned so much already! Now hubby and I are going to go gluten/casein free after getting our Enterolab results on Wednesday. I'm feeling a bit overwhelmed...he wants to start already...I haven't quite adjusted yet.

Anyone have any advice on how quickly to make this change?

Right now I would say you are already 3 days behind. Listen to your husband and get to it. The more you try to adjust the harder it will be. Personally I started the minute I hung up the phone after being told this was my option. I have never looked back. I will admit there were times in the beginning I did not exactly like what I was doing but I was never tempted to try anything I did not trust being gluten free. In my case the results were perfect. Stick to mostly naturally gluten free foods and listen to your body! Good luck.

Tom

AZKat Newbie
Right now I would say you are already 3 days behind. Listen to your husband and get to it. The more you try to adjust the harder it will be. Personally I started the minute I hung up the phone after being told this was my option. I have never looked back. I will admit there were times in the beginning I did not exactly like what I was doing but I was never tempted to try anything I did not trust being gluten free. In my case the results were perfect. Stick to mostly naturally gluten free foods and listen to your body! Good luck.

Tom

Thank you all for the warm welcome and the great advice. I know we have to do it, and we have already gone through the pantry. It's just that I hadn't expected the results I got....

My husband has always had trouble with wheat, and we basically did the enterolab expecting him to have a celiac gene. I had the test on myself too just to see. I've had chronic fatigue for many years, and some discomfort in the digestions department, but I didn't think I was celiac. It turns out we both have two celiac genes (he has 2 copies of DQ2, I have one DQ2 and one DQ8, plus we both have antibodies to gluten and casein). I was going to go gluten free at home and maybe have something once in a while outside the home...I wasn't expecting my results to be so serious. It's the dairy on top of the rest that is really throwing me for a loop. I just wanted to have a few days to have a few favorites one last time as this is a permanent change...I think I would be less angry and less apt to cheat later if I have that time. I just wondered if you guys thought it better to do that or go his route and dive in immediately.

I forgot to mention that he has malabsorptiuon (I found this board when he turned up low in Vit D as they were trying to figure out his osteoporosis), but I do not have malabsorption yet according to enterolab test.

mouse Enthusiast

I did not have any choice for when I went gluten free. By the time my doctor thought of this disease I was dehydrated, had been sleeping about 20 hours a day for a month and had lost 53 pounds. The doctor said that another 2 weeks he figured I would not have had any recovery (his words). So, I did not have time to say goodbye to any foods. I think that with your husband's malabsorption that the sooner the better. But, that is only my opinion. You both have to decide for yourselves.

About the dairy. I am also allergic to dairy and I use Vance's non dairy milk. They have a website and it is real tasty. I don't drink it, but I use it in my coffee and for mash potatoes. Any recipe that calls for dairy. I also cannot have corn and so I add roasted garlic olive oil to the mash potatoes and my husband likes them better then regular pototoes (he can eat gluten). Vance's also sells a chocolate milk and that is a wonderful drink. These come in powdered form and you make it up.

And before I forget - Welcome to the forum. You will find recipes, advice, etc. here. And we never consider any question dumb.

BTW, I forgot to mention in my PM, that if you need a Rheumy, I go to one in faaaaaaaar West Phoenix and I look at the new stadium from his office. He is familiar with Celiac. Maybe your husband already goes to him - Dr. Tessor?

AZKat Newbie
I did not have any choice for when I went gluten free. By the time my doctor thought of this disease I was dehydrated, had been sleeping about 20 hours a day for a month and had lost 53 pounds. The doctor said that another 2 weeks he figured I would not have had any recovery (his words). So, I did not have time to say goodbye to any foods. I think that with your husband's malabsorption that the sooner the better. But, that is only my opinion. You both have to decide for yourselves.

About the dairy. I am also allergic to dairy and I use Vance's non dairy milk. They have a website and it is real tasty. I don't drink it, but I use it in my coffee and for mash potatoes. Any recipe that calls for dairy. I also cannot have corn and so I add roasted garlic olive oil to the mash potatoes and my husband likes them better then regular pototoes (he can eat gluten). Vance's also sells a chocolate milk and that is a wonderful drink. These come in powdered form and you make it up.

And before I forget - Welcome to the forum. You will find recipes, advice, etc. here. And we never consider any question dumb.

BTW, I forgot to mention in my PM, that if you need a Rheumy, I go to one in faaaaaaaar West Phoenix and I look at the new stadium from his office. He is familiar with Celiac. Maybe your husband already goes to him - Dr. Tessor?

Wow mouse, sounds like it was in the nick of time for you. I am glad that you got the diagnosis in time. It must have been very scary. I can see why you didn't hesitiate. I hope you are feeling alot better now.

At the moment my husband is seeing a doctor at an osteoporosis clinic...the name starts with a V but I can't remember the whole thing. She is the one who finally found he was low in Vit D. She ordered a ttg test but the blood test came out negative and she didn't want to do a celiac panel. She said since the blood test was negative he didn't have it. Luckily, I already suspected that the malabsorption of D was related to celiac and had found this board by then. We ordered the enterolab tests before even getting the blood result.

My husband had gone off of wheat for about 5 years before he broke his ankle and was diagnosed with osteoporosis. Apparently the first endocrinologist did test him for celiac but since he hadn't been eating any wheat or other gluten grains it came back negative (found a copy of his lab work). So for the past 5 1/2 years the doctors couldn't figure out the cause of the osteoporosis. His parathyroid hormone was elevated the entire time, but his blood calcium level was normal. After we moved to this house he wanted to go on a raw food diet, and he began eating whole grain bread....so when this doctor tested his vitamin D it finally showed up below normal. She gave him a massive dose of Vit D to take for six weeks, and said that if he didn't absorb it she would test him for celiac. Turned out he did absorb the vit D and the ttg was neg.

I knew the wheat had made the difference since he'd been eating it again for over a year by this point. So that's how I began researching celiac and found this board, and learned about enterolab. Now we have the results, and we know celiac is the reason.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,080
    • Most Online (within 30 mins)
      7,748

    SheenaG1
    Newest Member
    SheenaG1
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.