Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Still Having Issues, Where Do I Go For Help?


jdater

Recommended Posts

jdater Newbie

I was diagnosed celiac about 6 months ago by a doctor who seemed just a little bit clueless (I went in to get tested after my mother's diagnosis, blood tests and endoscopy both were positive for celiac). I went back in 3 months ago for a check up and told him I wasn't feeling much better and asked if I migt be having problems with milk. His response was to say, "I guess a celiac could have some trouble with milk. You might try some lactase pills." And that was it. I did try cutting my milk intake down some (though it's been hard!) and taking the lactase pills. I still feel pretty sick all the time. My question is, should I cut it out completely? Are there other things that could be causing reactions? Should I be going to a different doctor? Are there tests for these other allergens he never thought to consider might also be causing me problems? I just want to feel better. My parents are both in the medical field and have always self-diagnosed and referred, so whenever I have problems I don't know where to go for help. Honestly, I feel akward going to doctors even for yearly physicals (probably why it took me so long to get diagnosed)--as if I don't have a right to be there if I'm not suffering from a life threatening disease ... and tummy issues never seemed to count.


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



Celiac.com Sponsor (A8-M):



Guest j_mommy

I'm sorry you are not feeling better!

It's casien not lactose that most celiacs have a problem with and there's no pill for that! I would try cutting milk and diary out for awhile and see if that helps!

You could see an alergist...they will check for numerous things....but they won't check for casien just lactose but atleast you could find out if you have a problem with that!

Have you tried keeping a food diary???? I did that when I was having problems and was able to find out that it was Mt. Dew causing my tummy issues(not from gluten but my tummy just didn't like Mt. Dew anymore!)

Have they done 6 month blood work to see if your antibody levels have come down???

Offthegrid Explorer

I experienced that, and *thought* I was getting glutened all the time. I was drinking all Lactaid when I used milk at all and didn't know what was making me sick. By trial and error, I've figured out recently that it is the casein in milk I am reacting to, not lactose.

I tried goat's milk for myself, because *some* can tolerage goat when they can't tolerate cow, but that didn't fly with me either.

Try switching to Blue Diamond Almond Milk for now. It's *delicious*. I don't know that I'd drink a glass by itself, but I forgot it wasn't real milk on my cereal.

Instead of butter you can use some margarine. Just make sure it's gluten and casein free. Fleishmann's *unsalted* is OK. There are some other brands that are fine, too. I got my spread from Wegmans so it is labeled gluten and dairy free.

Also, be careful of *anything* that says non-dairy. If it has sodium caseinate and you can't have casein, then you're going to react to it. (That means no International Delight in the coffee, sadly.)

You can also get gluten and dairy free chocolate. Some dark chocolates don't use milk fat.

I will warn you that it's possible you may also be sensitive to soy. I think I might be, but it's going to take some time and further experimentation for me to find that out.

Best of luck. But I'd say for now go off all dairy altogether.

hathor Contributor

It could be you are regularly and inadvertently glutening yourself. Are you operating from a good comprehensive list of safe, unsafe, and "need to be investigated" ingredients (like natural or artificial flavors), or just recommendations from your clueless doctor? Have you gotten rid of items in your kitchen that might harbor gluten, like cutting boards, and instructed other family members how not to contaminate shared items? Have you checked out all supplements & medicines to make sure they don't contain gluten -- you can't rely on the label here, unless it says "gluten free." What about personal care items, like toothpaste, lip balm, etc.?

Assuming no glutening, another food intolerance is a likely reason for your symptoms. Casein seems to be the most common, with soy coming in third. It may be other things, unfortunately. This is where a food and symptom diary can be useful. (Or drive you nuts <_< ) If your symptoms don't seem to wax and wane, it would seem that something you have all the time is bothering you.

What are your symptoms BTW and a typical day's diet? That might help in giving you advice.

The other testing I am most familiar with is that of Enterolab, which can test for intolerances to casein, egg, soy & yeast.

There are other tests out there for food intolerances, ranging from blood tests to something done by kinesiologists which involve muscle reactions or something. But those who have tried these or researched them will have to tell you more.

It won't hurt you to go casein-free and see how you feel. If you feel better but still not completely better, then try cutting out soy.

If this doesn't do it, you can go on an elimination diet. Here is a link with a description of one such diet. It also mentions the most common food sensitivities. I suppose it would be worth it to try eliminating just these items before doing the entire long and tedious elimination diet.

Open Original Shared Link

UR Groovy Explorer

There are a lot of things that could be issues. Hate to throw another one into the mix, but one of the things that I never would have guessed for me was monosodium glutamate - MSG (watch for yeast extract while testing it - if you decide to test it, that is). It's a long shot, but you may want to check your labels and see if there's a trend that coincides with that - keeping a food journal is the way to catch that one (I believe). If you don't have issues with it, that'll be one more thing you don't have to worry about.

Casien is probably more likely though.

I hope you find your culprits - it can be an arduous task, but it's worth it in the end.

hathor Contributor

Many celiacs test positive for antibodies to Sacc. cer. (I abbreviate because I'm too lazy to look up the spelling right now), also known as baker's or brewer's yeast. Whether they react adversely to consumption of that yeast is not something I've been able to find out despite my research.

I have such antibodies, but haven't tied yeast consumption to any symptoms in myself. But then I haven't been truly yeast-free until recently, not having realized that I should have cut out wine. Maybe I didn't want to know B)

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. - chrish42 replied to chrish42's topic in Doctors
      2

      Doctors and Celiac.com

    2. - Scott Adams replied to shirlane's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Is AG1 safe for Celiacs??

    3. - Scott Adams replied to chrish42's topic in Doctors
      2

      Doctors and Celiac.com

    4. - nataliallano replied to MagsM's topic in Related Issues & Disorders
      28

      Inflammation and Menier’s disease link?

    5. - Wheatwacked replied to Betsy Crum's topic in Related Issues & Disorders
      5

      Chest pain from celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,260
    • Most Online (within 30 mins)
      7,748

    Madisonmahayla
    Newest Member
    Madisonmahayla
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • chrish42
      All I can say is this site is great!
    • Scott Adams
      From their website I see "organic barley leaf powder" as an ingredient. Keep in mind that the gluten is in the kernel, and not in the leaves. https://drinkag1.com/about-ag1/ingredients/ctr
    • Scott Adams
      Before the rise of social media we were well known by a lot of doctors and were recommended by many, especially our Safe & Forbidden Lists, but as doctors get younger and younger this is probably not happening as much as before. 
    • nataliallano
      Thanks Scott I will definitely check my vitamins and minerals to see what I am missing so then I can supplement. I was very concern about my Meniers syntoms and i tryed to find some alive. Now im just realizing that my celiac is provably the root cause of my Meniers none of the 12 doctors I saw told me anything about this.  This web site is so helpful, thanks to people like you we can get answers. 
    • Wheatwacked
      Vitamin D deficiency can contribute to rib pain. Chest pain stemming from the ribs ccould be costochondritis, which involves inflammation of the cartilage connecting the ribs to the breastbone. This pain can range from mild to severe, potentially mimicking heart attack symptoms, and is often worsened by breathing or movement. Other potential causes include muscle strain, rib fractures, or even referred pain from other conditions.  It will also help to chose vegetables low in omega 6.
×
×
  • Create New...