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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    2. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    3. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    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

    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled 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.