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

Where's The Gluten?


Sarahsmile416

Recommended Posts

Sarahsmile416 Apprentice

Not celiac, recently diagnosed with EE, but suspect I am sensitive to gluten so am trying a gluten free diet to see if it eliminates my problems.

Went to a restaurant and asked for their gluten free menu...if said they could do any of their burgers without a bun, so I figured I'd be safe as I'm not sure how sensitive I am to CC yet. Anyway, so I got a turkey burger with cheese and guacamole on top with brocolli on the side. I know the brocolli is okay, so I'm wondering where else the gluten could be because while my reaction hasn't been severe, I'm having tons of reflux and mild D. So where could the gluten be?? Can anyone help?


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

As incredible as it seems, some companies/people feel the urge to put gluten in guacamole. I was surprised myself when a know gluten freer asked if my guacamole was gluten free. I said yes (before I was eating gluten free) and he said "How do you know?" I said because I made it myself. He then decided to eat it. When in doubt, ask, or don't eat it.

Sarahsmile416 Apprentice

I was afraid of that, mushroom...that was the only thing I could think of short of CC..,only thing I am wondering is what type of gluten they might put in there...my mom makes it all the time and just adds lemon and garlic...well live and learn! I think I will avoid guacamole unless I or my mother makes it!!

kareng Grand Master

Have you checked what causes reflux? Fatty things, spicy things, large meal, eating to close to bed, etc. maybe it had nothing to do with gluten and that is what is causing you issues?

Sarahsmile416 Apprentice

I really don't do any of those things though. I don't eat large meals, almost never eat fatty foods and haven't eaten spicy foods in some times. And honestly, reflux is a side issue for me...the bigger issue is still C and D. Plus, there was inflammation in my intestines...

kareng Grand Master

Sorry. You said you had " tons of reflux" so I thought maybe, with the EE diagnosis, you would want to try that diet.

If I remember, you are getting the copies of the medical records to find out what the inflammation in the sm intestines is, correct? If I'm thinking of someone else, make sure you get them. And ask that GI what you are supposed to do about this EE and inflammation. There has to be a cause for the inflammation. It's nuts these docs that give you a " diagnosis" and no instructions.

Sarahsmile416 Apprentice

Sorry. You said you had " tons of reflux" so I thought maybe, with the EE diagnosis, you would want to try that diet.

If I remember, you are getting the copies of the medical records to find out what the inflammation in the sm intestines is, correct? If I'm thinking of someone else, make sure you get them. And ask that GI what you are supposed to do about this EE and inflammation. There has to be a cause for the inflammation. It's nuts these docs that give you a " diagnosis" and no instructions.

Hi Karen-

Yes that was me...I probably won't get them until the new year, but hopefully will talk to the doctor on Wednesday. The problem is exactly that - I know there is inflammation - but I don't know the extent of it. And yes , all diagnosis, but no instruction save, take this pill for the reflux...no word about everything else, which was my presenting problem and NOT the reflux. Kills me because I thought she was a good doctor..I was really impressed. Not impressed so much anymore. It always annoys me when doctors leave it to other people to talk to patients and not themselves!


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

I know that when my mother made hamburgers she added bread crumbs.

ajnemajrje Newbie

Many restaurant nowadays have food prepared off site. There might be gluten in the burger

OR

They might have had it prepared as usual, remembered all of a sudden that it was to be without a bun and then took the bun away.

That has happened to me at a restaurant once. The only reason I knew was that there was a crumb fromthe bun the they forgot to brush off or I would not have known.

Sarahsmile416 Apprentice

I admit I was pretty suspicious that something like that may have happened when I noticed a piece of lettuce on the burger when there was not supposed to be. At least made me suspect there was some error occurring there.

cavernio Enthusiast

BBQ sauce or regular spices can have gluten, and both could have been added to the patty itself. Furthermore, they're the sort of items wheat-heads might not even consider as having gluten.

It might not be gluten at all though. I know I didn't have any issues with lactose at all until going gluten free. (I've since discerned why, because gluten causes celiacs intestines to create much larger gaps than usual, so the lactose was probably getting into my bloodstream whole, whereas when immediately stopping the gluten and with the intestines not breaking lactose down or the lactose getting absorbed, that's when it causes problems.) The cheese (if not an aged cheese) may have been the culprit.

Sarahsmile416 Apprentice

BBQ sauce or regular spices can have gluten, and both could have been added to the patty itself. Furthermore, they're the sort of items wheat-heads might not even consider as having gluten.

It might not be gluten at all though. I know I didn't have any issues with lactose at all until going gluten free. (I've since discerned why, because gluten causes celiacs intestines to create much larger gaps than usual, so the lactose was probably getting into my bloodstream whole, whereas when immediately stopping the gluten and with the intestines not breaking lactose down or the lactose getting absorbed, that's when it causes problems.) The cheese (if not an aged cheese) may have been the culprit.

Actually I was thinking lactose might have been what caused it. Tonight I had chicken with polenta and corn and green beans and I had a reaction...then my SIL told me the sauce the chicken was in had sour cream. Thus, I have determined, I may need to cut out lactose as well. Sigh...

mushroom Proficient

Actually I was thinking lactose might have been what caused it. Tonight I had chicken with polenta and corn and green beans and I had a reaction...then my SIL told me the sauce the chicken was in had sour cream. Thus, I have determined, I may need to cut out lactose as well. Sigh...

Why don't you do a trial of totally dairy free? It could be coming from the casein or the lactose. Maybe not even gluten??? I don't know if you have trialled gluten without dairy? That could be a possibility.

Sarahsmile416 Apprentice

Why don't you do a trial of totally dairy free? It could be coming from the casein or the lactose. Maybe not even gluten??? I don't know if you have trialled gluten without dairy? That could be a possibility.

It's a possibility, although I have had reactions (horrible ones) from eating pretzels when no dairy was present. I do plan to cut out dairy after tonight though.

Though, this may be a stupid question - what are caseins?

mushroom Proficient

Not a stupid question. Milk is made up of milk sugars (lactose), protein (casein) and fat. You need different enzymes to digest the different parts of the milk. The milk enzyme is made in the part of the small intestine that is destroyed by gluten so the lactose part is not digestible until you heal your gut. The casein is digested by a different enzyme and some people do not have this enzyme and are therefore dairy intolerant and no amount of healing the gut will restore this enzyme.

So if you are celiac, you are generally temporarily lactose intolerant as well. Since you were fairly gluten light there is really no way of knowing if your test results were accurate, so I guess you are just going to have to experiment with your diet and find out what things are bothering you. The easiest way would be to eliminate both gluten and dairy, and then see what happens.

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
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    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.