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

Just Need A Little Help And Tlc


newceliac

Recommended Posts

newceliac Enthusiast

I was diagnosed in Sept. 2007 with celiac disease and I have been gluten free for about 6 months. I feel a lot better although I still have some bad days. I am still periodically having trouble with chronic constipation, nausea & some joint pain. Other than a few episodes of possible cross contamination, I am on a strict gluten free diet. I have been dairy free off and on during the past 6 months because I thought I may be casein intolerant. But, I think I was in a state of denial because I love chocolate and ice cream, etc. It is so depressing to give up gluten foods and I was truly hoping that I was not casein intolerant too.

I finally sent off for the casein intolerance test with Enterolab. I got my results back today and it was definitely not what I was hoping for. This is my results:

Cow's Milk Protein Sensitivity Stool Test

Fecal anti-casein (cow's milk) IgA antibody 22 Units (Normal Range <10 Units)

It just doesn't seem fair to be dealt food intolerances. Here are a couple of questions that I am hoping someone can help me with.

1) Is casein intolerance permanent? After a few months of being CF, is it possible to reintroduce?

2) Are there any foods that I can still eat if I am CF.....such as cheese, yogurt? I am an extreme lover of chocolate and assume I will have to give it up because it has casein?

3) I know with celiac disease, you cannot ever eat gluten. But is it possible to eat dairy sometimes if you have a casein intolerance?

It just doesn't seem fair that a lot of people with people with celiac disease don't have to go CF. Just look at lot of the gluten free cookbooks.....most of them have many recipes with dairy products.

Oh well, enough of my pity party.......I just hope ya'll can shed some light on these questions....or give any advice that would make this easier.


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



Celiac.com Sponsor (A8-M):



Glutenfreefamily Enthusiast

Im sorry about you needing to go CF too. From what I understand, layman here, casein intolerance doesnt go away like lactose intolerance can. There are casein free and soy free chocolates out there. Enjoy life chocolate chips are really good. Ricera yogurt is okay for you but it does have a different texture, more like jello but with a good amount of probiotics in it. There are some gluten free casein free cheeses out there but I havent found a substitute I like. I know some people do cashew cheese or soy cheeses.

Extra intolerances are hard to take especially in the beginning but it does get easier knowing how crappy you will feel and the damage you are doing to your body if you do cheat. I am soy, casein, gluten intolerant and I cannot tolerate nuts, seeds, oils or meats. Beans and rice make my arthritis flair up and give me headaches. Look around for gluten free vegetarian recipes for casein free meals and just add meat if you want too. Vegiac has loads of recipes and different product reviews. I have some too if you want I can pm you some :)

dbmamaz Explorer

I dropped all dairy at the same time I dropped wheat, and expanded to gluten a few weeks later. It hasnt been too bad ... soy sour cream is good enuf for tacos, I LOVE almond milk in my coffee, and my husband bought me some great vegan chocolates for xmas, I think it was from Chocolate Decandance. There is soy yoghurt, but some of them have dairy in them, and i hate the taste of soy milk, so I just avoid them. My standard breakfast had been grits with cheese and margerine, and occasionally some ham. I just changed it to more ham, and some dairy-free margerine, and it was totally yummy!

Of course, its hard at first - every time i realize i have to give something up, i dont start until my currently planned menus have been eaten . . . then i just plan my next several meals with my new restrictions in mind.

also, it helps to splurge on the foods you love that you CAN eat . .. buy better fruit or something else you really love.

Hang in there - feeling better will make it worth it.

Mom23boys Contributor
1) Is casein intolerance permanent? After a few months of being CF, is it possible to reintroduce?

2) Are there any foods that I can still eat if I am CF.....such as cheese, yogurt? I am an extreme lover of chocolate and assume I will have to give it up because it has casein?

3) I know with celiac disease, you cannot ever eat gluten. But is it possible to eat dairy sometimes if you have a casein intolerance?

1) Treat a casein intolerance like a gluten intolerance. These are the two you don't mess with.

2) No cheese. No yogurt. Not all chocolate has casein. Look for dark chocolates.

3) No cheating. Treat it with the same respect you treat celiac. You may not see symptoms within 2 minutes of ingesting something but it is still doing damage to your body.

gfpaperdoll Rookie

I use Sunspire Chocolate Chips, I get them at Whole foods. I use coconut milk in place of milk for homemade fudge and baking. I can eat butter - use it in my fudge. Butter is low in casein. Some people can tolerate it, some cannot. But, I will say that I do not use it much, just for baking & I rarely bake...

I would avoid soy milk products, if you use them you could develop a sensitivity to soy. better to just go with almond or coconut milk.

I also use the coconut milk in my cornbread. Just take your regular cornbread recipe & use corn flour in place of wheat flour & use coconut milk in place of milk, you can drop an extra egg in the liquid measure if you want the cornbread "lighter" also in case you do not use corn flour & use all cornmeal. You do not need to use xanthan gum in cornbread. It is hard to ruin cornbread :D

I do eat the occasional See's chocolate - but not the candy bars, & do not have a problem with them. But I have been gluten-free for 4 years & wheat light for 10 years before that & I do not eat grains often. I think it also depends on how many other irritants you are eating... I drink only water, eat mostly whole foods, have no corn syrup in my diet (except the See's chocolates) do not eat soy, do not eat beef, unless it is the twice a year antibiotic/hormone free steak, eat no grains except for the occasional corn tortilla & a little rice when eating out at Pei Wei. I do not cook rice at home anymore. If I make a stirfry, I eat it without rice...

everyonce in awhile I cheat on dairy, but it is never worth it. I have mostly quit doing it. I was out of town recently & had a gluten-free pizza with cheese. I did not react to the cheese until about two days later... Next time I will just have something else...

dairy is more addictive than gluten & if you have it once you will crave it again. For ice cream I suggest you get an ice cream maker & make fruit sorbets. that is on my wish list for this year...

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. - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    2. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    5. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,909
    • Most Online (within 30 mins)
      7,748

    Hmart
    Newest Member
    Hmart
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.