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

Need Help With Best Diet To Start Off W/in Case Of Otherintolerances


jensey

Recommended Posts

jensey Apprentice

Recently diagnosed by blood work. Dad has both genes is diagnosed with Celiac and he was recently diagnosed with casein and soy allergies as well.

I am trying to figure out the best, most simple diet that is as nutritionally sound as possible to rule out all other intolerance's. I have been living as Gluten free as possible but because I still work in a bakery some exposure is currently out of my control. In the beginning stages of my disease, before I was diagnosed, DAIRY became an OBVIOUS issue. I lived in denial about that a little longer than the denial I had about gluten.

At this point I have been as gluten free as I can be but often take 2 steps forward and 1 back with regards to my digestive issues. It's better some days and others I feel as though I am still filled with gluten. I KNOW about the free flowing flour in the area I work in so no need to address that specifically, I am working to change that exposure.

What are a few simple things that will sustain me and are a good starting point to have as my diet. How long before I introduce any new foods into that spectrum? I recognize now that a food diary is no longer OPTIONAL and because I am making most items I ingest at home now it wont be as difficult as I thought it might be.

I have been eating meats, soy items, vegan/gluten free items, veggies, fruits, eggs, nuts, beans, quinoa, brown rice... is white rice easier on the digestive tract and on that same note given my main symptom of constant D should I eliminate fiber for awhile?

I do drink on occasion and I wonder if that is hindering my healing as well.

Any suggestions/experiences would be appreciated. Currently I am using many of the diagnoses my father gets about food issues from his doctor as a starting point because I am SOOO his daughter genealogically speaking...he is the one who I likely inherited this from. When we speak his issues are so similar to mine that it seems silly to pay for a Doctor to tell me what he has already paid to find out.

I look forward to hearing from you.

Jen


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



Celiac.com Sponsor (A8-M):



mommida Enthusiast

Our family's experience with elimination diet..

Eliminate all top eight (fish, shellfish, soy, peanuts, tree nuts, wheat, and eggs) and peas along with the gluten free diet (we exclude gluten free oats too).

Keep a food journal.

Two weeks after the elimination, add one of the suspect foods in for a week or two weeks for the test trial.

Try to add in the suspect food as plain as you can, and at a more convenient time for possible reactions.

It is very time consuming and frustrating. Good luck!

ang1e0251 Contributor

That is excellant advice. I only will add that you shouldn't assume you'll be just like your dad. My daughter is very like me but I totally missed her lactose intolerance as her symptoms were very different from my own. She does tend to be like me but react differently. And she suffers from headaches which I have never had.

I would also say if you suspect something you are eating could be bothering you, challenge it just like the PP outlined. You said you thought alcohol might bother you. I would elimanate it then challenge it. You know our body does speak to us and it might be hinting to you. Can't hurt to check it out.

burdee Enthusiast
Recently diagnosed by blood work. Dad has both genes is diagnosed with Celiac and he was recently diagnosed with casein and soy allergies as well.

I am trying to figure out the best, most simple diet that is as nutritionally sound as possible to rule out all other intolerance's. I have been living as Gluten free as possible but because I still work in a bakery some exposure is currently out of my control. In the beginning stages of my disease, before I was diagnosed, DAIRY became an OBVIOUS issue. I lived in denial about that a little longer than the denial I had about gluten.

At this point I have been as gluten free as I can be but often take 2 steps forward and 1 back with regards to my digestive issues. It's better some days and others I feel as though I am still filled with gluten. I KNOW about the free flowing flour in the area I work in so no need to address that specifically, I am working to change that exposure.

What are a few simple things that will sustain me and are a good starting point to have as my diet. How long before I introduce any new foods into that spectrum? I recognize now that a food diary is no longer OPTIONAL and because I am making most items I ingest at home now it wont be as difficult as I thought it might be.

I have been eating meats, soy items, vegan/gluten free items, veggies, fruits, eggs, nuts, beans, quinoa, brown rice... is white rice easier on the digestive tract and on that same note given my main symptom of constant D should I eliminate fiber for awhile?

I do drink on occasion and I wonder if that is hindering my healing as well.

Any suggestions/experiences would be appreciated. Currently I am using many of the diagnoses my father gets about food issues from his doctor as a starting point because I am SOOO his daughter genealogically speaking...he is the one who I likely inherited this from. When we speak his issues are so similar to mine that it seems silly to pay for a Doctor to tell me what he has already paid to find out.

I look forward to hearing from you.

Jen

I have celiac disease and 6 other food allergies. I do NOT recommend using an 'elimination' diet to guess your other allergies/intolerances. Although many people can have allergies to those 8 common allergy foods, they can have allergies to almost anything. The elimination diet is too 'iffy' and requires unnecessary restriction, which may feel more like deprivation. Restriction without immediate answers may seem overwhelming.

Instead I recommend getting delayed reaction food allergy blood tests, like the ELISA (enzyme linked immunosorbent assay) test for over 100 different commonly eaten foods. I also took the Enterolab stool tests to diagnose my casein and soy IgA mediated allergies. Every diagnosis I received from those 2 kinds of tests matched my empirical evidence. So, when I ate those foods, I experienced excruciating gut pain or 48 hour tachycardia and nausea (with cane sugar). Knowing I have a medical/lab test diagnosis plus my own empirical experience with the diagnosed allergens helps me confidently and consistently abstain from my allergens. When I abstain, but still get gut reactions, I know that my symptoms come from bacterial dysbiosis in my intestines, rather than allergen reactions. I've had and been treated for 3 different bacteria, a parasite and a fungus. If I had used elimination diets to find my allergens, I might have assumed those bad gut bugs were really allergy reactions.

SUE

katie may Newbie

"Instead I recommend getting delayed reaction food allergy blood tests, like the ELISA (enzyme linked immunosorbent assay) test for over 100 different commonly eaten foods. I also took the Enterolab stool tests to diagnose my casein and soy IgA mediated allergies. Every diagnosis I received from those 2 kinds of tests matched my empirical evidence. So, when I ate those foods, I experienced excruciating gut pain or 48 hour tachycardia and nausea (with cane sugar). Knowing I have a medical/lab test diagnosis plus my own empirical experience with the diagnosed allergens helps me confidently and consistently abstain from my allergens. When I abstain, but still get gut reactions, I know that my symptoms come from bacterial dysbiosis in my intestines, rather than allergen reactions. I've had and been treated for 3 different bacteria, a parasite and a fungus. If I had used elimination diets to find my allergens, I might have assumed those bad gut bugs were really allergy reactions."

Sue,

How is your GI system now? I've read some of your earlier posts and we seem to have some similar problems; I have C and even on gluten-free/DF and other allergen free diet I get bad gut reactions. Did the treatments make a big difference? I'm planning on going on the SCD when I get settled back at school, as it seems like it would address all my problems, but I'm curious about your naturopath experience. Have you tried the SCD? Is there anything else that works for you? Thank you!

Katie

  • 5 weeks later...
jensey Apprentice

Sue,

I really appreciate your advice. Your reply sounds more like the answer I was looking for. Having C I recognize that many foods may cause me issues that are not "common allergies". I am so new to this that the names of the tests are helpful so that when I speak to my doctor I can have specific ideas of what I would like to try rather than expecting him to have the best suggestions.

In the mean time what would you suggest as a starting point? Honestly I am getting to the point where eating is no longer enjoyable and I try not to do it unless absolutely necessary. I don't want to run my body down any further, but I can't imagine that my chronic type 7 stools (extreme d...mainly fluid) is getting much nutrients from what I eat anyway. There is a vegan gluten free protein powder type product "Vega" that I am considering making a main staple of my diet as well as simple chicken, rice, potatoes, bananas, peanut butter and apples. My hope is maybe I will get to a type 6 or lower stool, but right now I am frustrated.

I still work in a bakery and I know the flour exposure there, as limited as it is, is likely still causing me issues as well. I am working to change jobs but it won't likely happen until after January unless I get too sick. I don't mean to sound hopeless and sad, I am cool with my diagnosis I just want to know what ELSE is causing me such trouble.

Thanks again for your informative reply.

I wish you well!

Jen

I have celiac disease and 6 other food allergies. I do NOT recommend using an 'elimination' diet to guess your other allergies/intolerances. Although many people can have allergies to those 8 common allergy foods, they can have allergies to almost anything. The elimination diet is too 'iffy' and requires unnecessary restriction, which may feel more like deprivation. Restriction without immediate answers may seem overwhelming.

Instead I recommend getting delayed reaction food allergy blood tests, like the ELISA (enzyme linked immunosorbent assay) test for over 100 different commonly eaten foods. I also took the Enterolab stool tests to diagnose my casein and soy IgA mediated allergies. Every diagnosis I received from those 2 kinds of tests matched my empirical evidence. So, when I ate those foods, I experienced excruciating gut pain or 48 hour tachycardia and nausea (with cane sugar). Knowing I have a medical/lab test diagnosis plus my own empirical experience with the diagnosed allergens helps me confidently and consistently abstain from my allergens. When I abstain, but still get gut reactions, I know that my symptoms come from bacterial dysbiosis in my intestines, rather than allergen reactions. I've had and been treated for 3 different bacteria, a parasite and a fungus. If I had used elimination diets to find my allergens, I might have assumed those bad gut bugs were really allergy reactions.

SUE

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.