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

Figuring Out Intolerances?


GIJane

Recommended Posts

GIJane Rookie

I have been on the gluten-free diet since June 2005. I still have trouble, which does not seem to be related to cc or any kind of gluten exposure. I suspect that I am intolerant to certain foods, though I'm not sure how to figure out what is giving me grief. I have kept a food journal but don't see any noticable correlation between what I eat and the reactions I have. Is an elimination diet the best approach? And how does an elimination diet work?

Any advice would be helpful. Thanks!


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



Celiac.com Sponsor (A8-M):



kabowman Explorer

I used an elimiation diet, sort of. I went to plain meat and plain veggies then added a few things in and noticed problems as they came and went - not the best way but at the time that is all I knew. NOW, I would go to plain foods for up to a week (BORING but necessary--others will say longer), then start to add other things back in. One of the things I noticed right away, my soy milk was making me sick every day, now that I was healthy enough to notice, so I did a soy challenge - that was definitly out.

Once I got the basics then I really did a thorough diary with all foods and symptoms to narrow down the last items. I still go through problems and just recently eliminated all non-dairy (except for the Vance's I haven't tried yet) and meat on styrofoam from our meat people, other styrofoam doesn't seem to bother me, yet, but theirs does so I get my meat behind the counter.

Once you have a nice simple diet, which will get so much better, you can identify any problem foods.

Guest southgoingzax

I had the same problem - for two and a half years! I could never figure out what was causing my symptoms because it just seemed to hard to eliminate anything else from my diet and sometimes symptoms seemed to be delayed, so how could I tell what it was from?

The best thing I ever did was spend the money on an extensive allergy test (not a skin test, a blood test). It was about $900, but it checked 90 common allergens. Turns out I am allergic to a lot of the foods I was eating (soy, dairy, eggs, shellfish, lettuce!) and that my allergic reaction was intestinal. I also discovered on my own that I have a reaction to fructose, so I can't eat too much dried fruit or other sugary foods. Even though I kept a food journal, it seemed like sometimes I would have a reaction and sometimes I wouldn't, even eating the same things every day. It was too hard to figure out.

I would suggest asking your doctor for this kind of allergy screen. If you simply can't make heads or tails of what is making you sick (like me), then it is worth the money. I FINALLY am starting to feel "normal".

jenvan Collaborator

I was going to recommend both of these. I did both to figure out my food intolerances. The blood test is helpful...but depending on your results you may still need to do a food journal to sort out the results. ie. my food intolerance test came back highly allergic to a myraid of foods. I kept a food/symptom journal that helped me confirm issues with certain foods, ie. dairy. The research surrounding blood testing for IgG food intolerances is still 'shady' and experts aren't yet sure exactly what it all means or what harm is done. ie. The only other food I gave up was dairy b/c it was the one I could confirm intolerance via symptoms.

mle-ii Explorer

Yeah, I'm struggling with this as well. Doing an elimination type diet I found some of the things that affected me, but not all. For example I didn't figure out fructose malabsorbtion until I did a food diary and saw that the increased honey was pointing towards too much fructose in my diet. (Symptoms were achy belly, crampy, gassy and sometimes diarrhea).

I think dairy is an issue, but I'm still not sure. Tried some cheeses (supposedly low in lactose) and D 8 hours later. Lactaid milk was ok, but still felt a bit off. Whey and Casein (protiens in milk) seemed ok though so I'm still not sure. :(

Corn I'm not sure about either. Frozen corn had me feeling ill with a terrible headache and belly ache 8 or so hours later, but it appears I can eat popcorn and tortilla chips without a problem. So who knows there as well.

I'm also guessing that no matter how "clean" I try to eat there is still the potential for CC in so many things. :(

I'm thinking of ELISA food testing, but not sure on it's abilities for figuring this out. Perhaps bacterial overgrowth testing, but who knows.

Why does this have to be so difficult?

Thanks,

Mike

BBadgero Newbie
I was going to recommend both of these. I did both to figure out my food intolerances. The blood test is helpful...but depending on your results you may still need to do a food journal to sort out the results. ie. my food intolerance test came back highly allergic to a myraid of foods. I kept a food/symptom journal that helped me confirm issues with certain foods, ie. dairy. The research surrounding blood testing for IgG food intolerances is still 'shady' and experts aren't yet sure exactly what it all means or what harm is done. ie. The only other food I gave up was dairy b/c it was the one I could confirm intolerance via symptoms.

I don't have a lot to offer yet (but will I hope soon!), but find your suggestions interesting. I just began going gluten-free, but seem to be getting tagged (TAG - totally ate gluten!) too often yet. Perhaps a complete elimination diet is the way to go. I have read that the dairy can piggy back on the symptoms of gluten though - anyone know about this (ie. lactose intol. as a result of gluten intol?).

mle-ii Explorer
I have read that the dairy can piggy back on the symptoms of gluten though - anyone know about this (ie. lactose intol. as a result of gluten intol?).

Well since gluten does damage to the villi in us. And lactase is produced in and around the villi in the intestine. Damaged villi would produce less or no lactase. And lactase helps us digest lactose. Then there is a link.


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



Celiac.com Sponsor (A8-M):



rinne Apprentice
I have read that the dairy can piggy back on the symptoms of gluten though - anyone know about this (ie. lactose intol. as a result of gluten intol?).

I've heard that sometimes once the villi are healed it is possible for those who have had a problem to tolerate dairy again .

Guest southgoingzax

Yeah, dairy can be a big problem! I am STILL hoping I can get back on the dairy bandwagon someday (I LOVE cheese and miss it so much!), but so far, no dice. For those of you concerned about dairy, I would definitely cut it out. I continued to eat dairy for two years following my diagnosis because I thought having one intolerance was enough, thank you very much. I didn't want to face giving up anything else. But all I did was keep myself sick for another two years.

As for the cross contamination issue, the best thing I found was to shop only at health food stores (Whole Foods, Wild Oats, Vitamin Cottage). They have products that are clearly labled gluten-free or "made in a dedicated facility". Anytime I eat something that is made by regular (non-organic) food corporations (like Tostitos) I get nervous, so I just make sure to buy foods with no preservatives or anything I can't recognize on the label from health food stores. I think I can honestly say I haven't been glutened (or tagged - I like that) in at least a year and a half. Of course, I spend way more on food than most normal people would believe, but I feel better knowing I am eating as healthfully as I can with little risk of cc.

zax

Clark Bent as Stupor-Man Contributor
I had the same problem - for two and a half years! I could never figure out what was causing my symptoms because it just seemed to hard to eliminate anything else from my diet and sometimes symptoms seemed to be delayed, so how could I tell what it was from?

The best thing I ever did was spend the money on an extensive allergy test (not a skin test, a blood test). It was about $900, but it checked 90 common allergens. Turns out I am allergic to a lot of the foods I was eating (soy, dairy, eggs, shellfish, lettuce!) and that my allergic reaction was intestinal. I also discovered on my own that I have a reaction to fructose, so I can't eat too much dried fruit or other sugary foods. Even though I kept a food journal, it seemed like sometimes I would have a reaction and sometimes I wouldn't, even eating the same things every day. It was too hard to figure out.

I would suggest asking your doctor for this kind of allergy screen. If you simply can't make heads or tails of what is making you sick (like me), then it is worth the money. I FINALLY am starting to feel "normal".

what lab did you use for the food panel test? I'm leaning towards getting a test of 100 or so allergens done through Immunolabs in florida soon.. I'm trying to get it covered through my insurance but wouldn't be surprised if I have to pay out of pocket..

Ashley Enthusiast

Yeah I'm havin' this problem too.

Mind if a question on this topic while all the knowing folks are here?

Isn't Enterolab the blood test or system that checks for the intolerances? I was Dxed by an upper endoscopy, so, I wouldn't know. Thanks!

-Ash

jenvan Collaborator
I don't have a lot to offer yet (but will I hope soon!), but find your suggestions interesting. I just began going gluten-free, but seem to be getting tagged (TAG - totally ate gluten!) too often yet. Perhaps a complete elimination diet is the way to go. I have read that the dairy can piggy back on the symptoms of gluten though - anyone know about this (ie. lactose intol. as a result of gluten intol?).

As has been said here, there is a link. However, there is a difference between lactose and casein (milk protein) intolerance. Lactose intolerance is not an "intolerance"...just an inability to break down milk sugar. Taking a lactaid or supplement can help with that and is a good way to experiment. And yes, as villi heal, some people find their lactose issues to go away. (However, a majority of folks lose the enzyme needed to digest this when they are young, Celiac or not...) Casein intolerance is not necessarily something that will go away like lactose intolerance upon intestinal healing. If your intolerance is to casein, you must simply avoid milk. Symptoms can be GI related but also signs such as headache, brain fog etc. Milk gives me brain fog. I am still amazed at my reaction to this day. I avoid it like the plague now! I hope that explains thing a bit more for you...

GIJane Rookie

Thank you all for the helpful responses.

I have tried a food/symptom journal and found it hopelessly murky--no clear correlations between food consumed and symptoms, though I suspect my probably in identifying links lay in the fact that I was still consuming a diverse array of foods. I think I will try the blood test and maybe return to the journaling...

Guest southgoingzax

Re: the blood allergy tests - I'm at work right now, so I'll have to post again when I get home and see which lab did the tests. Some insurance companies may cover it, but as I don't even have health insurance, I felt my only option was to take out a loan and get it done.

jenvan Collaborator

I used Great Plains Lab b/c I thought their tests were comprehensive, less expensive, and they billed partially to my insurance, anthem. Heres info on their food allergy/intolerance testing. You can get IgE and IgG or either.

BBadgero Newbie

Thank you for sharing all of your experience and troubles in identifying - I will try the journaling, but I think it might be wise just for the test as well. Next step - check the insurance carrier for coverage. And to add my 2 cents for whatever I am truly intolerant of - it takes me about 2 weeks to "recover" from being tagged as well.

~Bill

Gluten free since June 2006

jenvan Collaborator
Thank you for sharing all of your experience and troubles in identifying - I will try the journaling, but I think it might be wise just for the test as well. Next step - check the insurance carrier for coverage. And to add my 2 cents for whatever I am truly intolerant of - it takes me about 2 weeks to "recover" from being tagged as well.

~Bill

Gluten free since June 2006

Yup, it can take me several days at a minimum to get over a dairy incident.

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. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    2. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

    3. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

    4. - KathyR37 posted a topic in Coping with Celiac Disease
      2

      New here

    5. - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Celiac attack confusion and anxiety


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,808
    • Most Online (within 30 mins)
      7,748

    mhendy123
    Newest Member
    mhendy123
    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

    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      This article, and the comments below it, may be helpful:    
×
×
  • 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.