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

Possibility Of Food Intolerances? Suggestions Needed!

jamiecasabellameeks

Recommended Posts

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted

Hi, everyone!! I was diagnosed with Celiac Disease approximately 1 month ago, and I have been gluten free 1 1/2 months! I really do feel a lot better but still not "normal".  I know and understand that it takes a WHILE for your body to heal from all of the damage.  I am trying to be patient, but I really do feel that I have some intolerances to other foods as well (possibly soy, dairy, sugar).  I have been in denial...because well, I felt like I had already given up so much!!  :unsure:

 

I now realize, however, that I just have to do this 100%, regardless, if I want to feel 100% better! I just need advice on the best way to go about it!  Should I go to my GP and ask to be tested for other food intolerances (or do they even do that)?  I must add that I live in Mississippi...The Celiac diagnosis, from my personal experience, is not always well accepted and is thought of as a "fad".  Feel a little lost at times...not knowing where to turn...

 

I don't REALLY want to just cut everything out without actually KNOWING what is causing me to not feel well?? I just want proof, I guess.

 

What are your experience?? I would really like to hear...I have learned more from the stories on this forum than from any doctor or dietician that I have seen!

 

Thanks in advance for your help!!!!!!!

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

You could try removing dairy for a while and see what happens. Some celiacs don't handle dairy very well when they are healing.

kareng Grand Master
kareng
Posted

Don't you have an actual diagnosis from a doc? If you have a doctor that thinks Celiac isn't real, you should get another doctor.

The best way to see if you are intolerant to a food is an elimination diet and food diary. I think you should give the gluten-free diet a few more months before you try to eliminate most all foods and try them on at a time. Don't eat dairy and gluten-free oats ( if you are eating them) and give it a few months.

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted
  • Author

Don't you have an actual diagnosis from a doc? If you have a doctor that thinks Celiac isn't real, you should get another doctor.

The best way to see if you are intolerant to a food is an elimination diet and food diary. I think you should give the gluten-free diet a few more months before you try to eliminate most all foods and try them on at a time. Don't eat dairy and gluten-free oats ( if you are eating them) and give it a few months.

I do have a diagnosis from my GI doc.  My GP is actually the one who referred me for testing, but even he admitted that he didn't know much about it.  I was referred to a dietician.  I felt like I found more on google and was more prepared for the meeting than him.  He has actually only worked with one other Celiac.  My family members (who have symptoms and SHOULD get tested) are hesitant to believe that it's as serious of a condition as I make it out to be...Sad, really, but true.  So, now I feel like I just have to PRETEND to feel better just to not have to listen to anyone saying anything about how I'm overreacting, etc...

 

I guess the weirdest thing about it is...I was feeling SO GOOD last week...so much so that I thought I was "healed".  What changed!?! Why do I feel bad all of a sudden?  This is the most confusing disease, truly.  I mean, I can't figure if I've glutened myself somehow (my kids still eat it) or if I have some other intolerance...

dilettantesteph Collaborator
dilettantesteph
Posted

I read up on testing for food intolerances.  It seemed like the tests are expensive and not very accurate.  You can use them as starting points for challenge/elimination dieting, but you still have to do those diets to be sure of what bothers you.  Your problem may not be other food intolerances anyway.  It may be that you are sensitive to the low levels of gluten allowed in gluten-free foods.  The levels tolerated vary widely.  In any case, it helps to keep a food journal and do challenge/elimination dieting.  Basically, if you think that something bothers you, stop eating it and see what happens.  If you are uncertain, start eating it again and see what happens.  

 

I also felt much better when I first went gluten free and then started having problems again.  I had to learn a lot more about avoiding gluten before I could be completely symptom free.  I hope that you feel better soon.

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted
  • Author

I read up on testing for food intolerances.  It seemed like the tests are expensive and not very accurate.  You can use them as starting points for challenge/elimination dieting, but you still have to do those diets to be sure of what bothers you.  Your problem may not be other food intolerances anyway.  It may be that you are sensitive to the low levels of gluten allowed in gluten-free foods.  The levels tolerated vary widely.  In any case, it helps to keep a food journal and do challenge/elimination dieting.  Basically, if you think that something bothers you, stop eating it and see what happens.  If you are uncertain, start eating it again and see what happens.  

 

I also felt much better when I first went gluten free and then started having problems again.  I had to learn a lot more about avoiding gluten before I could be completely symptom free.  I hope that you feel better soon.

Thank you for your comment!  I think at the beginning of this I thought I wouldn't be one of the "sensitive ones"...I'm starting to feel otherwise now.  Like tonight, my husband's family cooked dinner...Of course, I couldn't eat a thing and DIDN'T! BUT...my 3 kids DID! Despite thorough hand-washing and trying to not touch anything, I feel HORRIBLE! I just don't think I can even go over there anymore.  It all seems ridiculous, but I know that's why I'm feeling this way...because I haven't eaten anything! How do you stay away from it completely?? That's what I'm having the hardest time with right now.  I feel like I need cover myself in plastic wrap when I go in public!  So hard to explain that to "non-Celiacs".  That's why I'm so thankful for this forum.  It's at least a little relief to just know you are not alone!

mushroom Proficient
mushroom
Posted

You have to learn to carry safe food with you wherever you go.  Always keep gluten free food in the car, in your purse, and take a meal with you when invited out to eat.  Always make sure your food is on a clean plate or on a paper towel on the counter, just take precautions, cover food you microwave.  You don't have to talk to anybody about it or explain anything to anyone beyond saying that you are intolerant of gluten and cannot eat food prepared by people who dont know how to keep it gluten free.  You can say it is hard enough for you to keep yourself gluten free without expecting someone else to be able to do it for you. :)

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

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

I find that it really helps to control gluten intake where I can.  That way if I get some accidental gluten from elsewhere, it doesn't bother me as much.  I have a little bit of wiggle room.  Also, once you are well healed, you don't experience symptoms as easily.  I am not less sensitive at all, unfortunately, but it takes awhile to get re damaged enough to notice it.  I can take a hit from airborne gluten at the farmer's market, for example, and still go on with my life.  It just takes while to figure out your individual level of sensitivity and how to manage it.  There are a lot of ups and downs along the way, but you can get there.

 

I actually don't carry food around with me unless I am going on an overnight trip.  I just don't eat when I'm out.  I'll eat before I go or when I get back.  That's easier and safer for me.

julissa Explorer
julissa
Posted

after I went gluten free I felt worlds better, but not fully. I was still nauseous and had terrible heartburn at times. I suspected dairy and soy. I tried an elimination diet for those one thing at a time. I then went to an allergist and found out I am allergic to both. so now, knowing that, I am gluten, dairy and soy free, and feel pretty darn great!

 

as far as the other issue, I know how hard that is. just carry your own food if you are going to social situations. it's hard around kids when they are eating. my grandkids always want to hand me their gluteny food with their precious gluteny fingers.

  • 2 weeks later...
Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Hello Jamie,

 

I felt better after going gluten free but in the following year my fibromyalgia pain returned.

I discovered it was the red kidney beans and later other foods.

Later, I did that expensive food intolerance test and I'm glad I did it because it pointed out other problem foods like peas which I never would have suspected.

But if you don't want to take this test, I recommend cutting out dairy, eggs, oats, and even all beans and peas.

Then reintroduce them one at a time once you feel better.

 

I understand about those dinners.

I wasn't invited to dinner parties after I went gluten free even though I could have eaten the vegetables and meat.

Also no one believed me, because I wasn't skinny.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Haugeabs
      - Haugeabs replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil. Gluten free but not certified gluten free. Soy free, GMO free.
    2. trents
      - trents replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even...
    3. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    4. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    5. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,413
    • Most Online (within 30 mins)
      7,748
    EBeloved
    Newest Member
    EBeloved
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Haugeabs
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Haugeabs · Posted

      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil.  Gluten free but not certified gluten free. Soy free, GMO free.   
    • trents
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By trents · Posted

      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even though celiac disease and gluten sensitivity are, technically speaking, not allergic responses, it would seem, nonetheless, appropriate to include "gluten" in that list for the present purpose. That would insure that food companies would be consistent with including this information in labeling. Best estimates are that 1% of the general population, many undiagnosed of course, have celiac disease and more than that are gluten sensitive."
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
×
×
  • 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.