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

Please Help!

horselover

By horselover
in Coping with Celiac Disease

Recommended Posts

horselover Rookie
horselover
Posted

Hi, I am new here but I have alot of questions. First of all I was dignosed with celiac about 2 months ago, once I went off gluten all of my symtoms stoped in 2 days. But now I have a problem all of my symtoms seem to be coming back, I have not changed anything I am extremly gluten free, I have all my meals made at a place called gluten free meals and that is all I eat. I don't know if I developed a new allergy or what is going on but I do not feel well and haven't for 2 weeks. Can anyone help????

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

have you checked your medications and personal care products? things like shampoos, lotions, even makeup all have to be gluten-free

also, many newly dx'ed celiacs have a problem with dairy initially. You may need to eliminate dairy for a while until your system begins to heal.

I have a newbie survival kit that I can e-mail to you if you want it... just e-mail me at nisla@comcast.net and in the subject put "request newbie survival kit"

Megan Rookie
Megan
Posted

jumping on this question thing....what is whey flour and can we eat it? I guess I don't understand what it is and it's not listed as something we can't eat.

OH and found my first box that said GLUTEN free...Wal-mart Brand mashed potato flakes! :lol:

shellbean Apprentice
shellbean
Posted
jumping on this question thing....what is whey flour and can we eat it? I guess I don't understand what it is and it's not listed as something we can't eat.

OH and found my first box that said GLUTEN free...Wal-mart Brand mashed potato flakes! :lol:

I just found some of WalMart brand stuff that said gluten free on it too and you should have seen me! I just about embarrassed myself! I was sooo happy! People started looking at me funny when I yelled out "LOOK IT SAYS GLUTEN FREE!!!!!! I CAN EAT IT!!!!!!!!!!!!" :lol: I made myself laugh at that one! LOL. One question I have too is how do you know when shampoos, lotions, etc have gluten? I don't know what ingredients are gluten infested. Do you know how I can find out without calling all the manufacturers?

Rusla Enthusiast
Rusla
Posted

Don't worry I get all excited and bounce around and dance when I see things are gluten-free.

I just realized something, it was horselover's name. I will never be able to kiss horses velvety lips again.

key Contributor
key
Posted

horselover,

This also happened to me. Felt great and that felt bad. I think what happens is that we get more sensitive to VERY tiny amounts of gluten and at first our bodies are just happy to be rid of the majority of it. Just go over what you are eating and be sure that nothing is being contaminated by gluten. Also check your lipsticks and if you are touching any gluten throughout the day. Also what you drink, etc. Hopes this helps. Also like someone said it could be dairy, but usually as you heal for six months or so you can reintroduce it to your diet. Hope you start feeling better.

Monica

TCA Contributor
TCA
Posted
I just found some of WalMart brand stuff that said gluten free on it too and you should have seen me! I just about embarrassed myself! I was sooo happy! People started looking at me funny when I yelled out "LOOK IT SAYS GLUTEN FREE!!!!!! I CAN EAT IT!!!!!!!!!!!!" :lol: I made myself laugh at that one! LOL. One question I have too is how do you know when shampoos, lotions, etc have gluten? I don't know what ingredients are gluten infested. Do you know how I can find out without calling all the manufacturers?

Call the manufacturers. Garnier Fructis is ok. Unilever (Suave, salon selctives, dove....) will list things, but some don't. Garnier sent me a list of chemical agents that can have gluten in them and most of them don't look glutenous. Softsoap, lubriderm, and baby magic are ok. My daughter had severe reactions to a curel lotion I was using. You can also get the Delphi list. It has a lot of saft stuff on there. If you don't, PM me and I'll try to find my electronic copy. Someone here was kind enought to send it to me.

horselover - I thought I was doing so good on the diet at first and then I started learning more and found htings I was eating had gluten in them. I takes a while to get it down pat. I don't know if this is happening to you, but it did to me. What kind of horses are you into? My dad used to train show horses, saddlebreds mostly. I miss them so much! My last horse passed 3 years ago.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.