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

Hidden Symptons

VRB

By VRB
in Coping with Celiac Disease

Recommended Posts

VRB Newbie
VRB
Posted

I am 45 and work out 6 days a week, lift weights,eat healthy and maintain a 5'4" 125 pound weight since I was 20. I just got diagnosed with Osteoporosis! And to boot , it is pretty bad- a negative 3.2 T score. I was just recently positively tested for Gluten Intolerance- I do not know if I have full blown Celiac because I can eat pretty much whatever I want and not get sick. I went Gluten free 3 weeks ago and it is so hard to know if I am accidentily ingesting the stuff because I don't get sick! I am scared however that if I am not 100% gluten free that I am not ever going to retain the calcium, vitamin D and even the weekly bone density meds I am on. This is totally frustrating. Making meals at home is not an issue. I buy all Gluten free items but eating out is really hard. How do I know the hamburger that I have asked for to be grillled on a "clean" surface is really cooked that way (even though I have asked for it) ? How do I know that the spatula they used was just not used to flip a breaded chicken patty? There are some places that have no clue what in the world I am talking about - even the restaurant at a Holiday Inn. The question is, how much or little Gluten can I ingest? There is no way that even a full blown Celiac does not get some Gluten in their weekly diet.

So confused,

VRB

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

Celiac.com Sponsor (A8-M):


confusedks Enthusiast
confusedks
Posted

VRB,

I am gluten free among with many other things. I am almost 100% I am as gluten free as possible. I can no longer eat out because of other food issues. But, when I was just gluten free, it's not that hard. You have to get things like salads with balsamic vinegar, etc. so you know it's gluten-free. I know almost immediately when I ingest gluten so it's a little different for me.

Good luck!

Kassandra

Red Bonney Jo Newbie
Red Bonney Jo
Posted

I have the same frustration as you, VRB. I have diagnosed Celiac disease and get sick from any amount of gluten but on a delay of a day or two. I try eating out at "normal" restaurants with friends and usually get sick a couple days later. In my perfect Celiac world I would cook all my own food all the time and feel better. In the real world I want to be as normal as possible and have to eat out, figure out my mistakes and learn from them for the next time. Some things I have learned so far are to visit restaurants that have gluten-free menus or know about the diet. There are several specifically gluten free restaurants in my area that I visit often. Another suggestion for eating at any restaurant would be the gluten free dining cards that have specific directions and can be taken to the chef of a restaurant. I look forward to other suggestions as I still have lots to learn. VRB, best of luck with your health and diet!

VRB Newbie
VRB
Posted
  • Author
I have the same frustration as you, VRB. I have diagnosed Celiac disease and get sick from any amount of gluten but on a delay of a day or two. I try eating out at "normal" restaurants with friends and usually get sick a couple days later. In my perfect Celiac world I would cook all my own food all the time and feel better. In the real world I want to be as normal as possible and have to eat out, figure out my mistakes and learn from them for the next time. Some things I have learned so far are to visit restaurants that have gluten-free menus or know about the diet. There are several specifically gluten free restaurants in my area that I visit often. Another suggestion for eating at any restaurant would be the gluten free dining cards that have specific directions and can be taken to the chef of a restaurant. I look forward to other suggestions as I still have lots to learn. VRB, best of luck with your health and diet!
VRB Newbie
VRB
Posted
  • Author

Thanks Red Bonney Jo for the kind words. I guess I am lucky that I do not have physical symptoms after eating cause it sounds like during this "learning process" I would be sick alot! I do have the restaurant cards and will give them a try. Good luck to you too

Confused in Iowa Rookie
Confused in Iowa
Posted
Thanks Red Bonney Jo for the kind words. I guess I am lucky that I do not have physical symptoms after eating cause it sounds like during this "learning process" I would be sick alot! I do have the restaurant cards and will give them a try. Good luck to you too

My son was diagnosed Celiac a little over a year ago. He's in the same situation as you that he doesn't get sick from getting gluten. Once going gluten free - I did notice an almost immediate result in his learning ability (he went from being a C-D student to an A-B student) and also his general state of mind and attitude became so much better. He is 12 now. We quit eating out - it's too hard to find places for him to eat so generally we eat at home 99.9% of the time. He is also diabetic so at our last appointment they did a blood test to check his Celiac's and the Dr. called and told me his levels (sorry for my ignorance, but I don't know all the correct words) but anyway, she said the levels are still too high and he must be getting glutened somewhere. So working on being more cautious. I was really disappointed because I felt that I was doing everything right for him.

My oldest son and no one else in our family are Celiac, so I do have products in the house that are not gluten free so evidently it's from crumbs, etc. It's a very challenging disease...Good luck to you!

VRB Newbie
VRB
Posted
  • Author
My son was diagnosed Celiac a little over a year ago. He's in the same situation as you that he doesn't get sick from getting gluten. Once going gluten free - I did notice an almost immediate result in his learning ability (he went from being a C-D student to an A-B student) and also his general state of mind and attitude became so much better. He is 12 now. We quit eating out - it's too hard to find places for him to eat so generally we eat at home 99.9% of the time. He is also diabetic so at our last appointment they did a blood test to check his Celiac's and the Dr. called and told me his levels (sorry for my ignorance, but I don't know all the correct words) but anyway, she said the levels are still too high and he must be getting glutened somewhere. So working on being more cautious. I was really disappointed because I felt that I was doing everything right for him.

My oldest son and no one else in our family are Celiac, so I do have products in the house that are not gluten free so evidently it's from crumbs, etc. It's a very challenging disease...Good luck to you!

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

Celiac.com Sponsor (A8-M):


VRB Newbie
VRB
Posted
  • Author

Wow... you are right this is a really hard disease to control. My heart goes out to everyone out there that has to do this. I met my husband 4 years ago and he loves to eat out. I can't imagine depriving him of that. It would be like "changing" him and I don't want to change anyone. I want to learn ways we both can live with this. He has been wonderful at home, we have gluten-free pastas and eat alot of rice so I don't ever have to cook two meals and he has been real understanding. But eating out has been a real chore. I hear most Celiac's just give up and don't eat out anymore. There has to be another way??? Thanks so much for your post and much good luck to both you and your son.

VRB

Eriella Explorer
Eriella
Posted

I also LOVE eating out, and I still do (sort of). Some things I have found is that when I call ahead and explain the situation, most nice restaurants can help you out. I also find that if I am at a restaurant where they are clueless, I don't chance it. I watch people eat and then go home and heat up leftovers. Some restaurants are great, others not so much. Once you find a great restaurant, tip well, and then become frequent customers. It means that you don't get a lot of variety, but you do get to eat out.

Confused in Iowa Rookie
Confused in Iowa
Posted

My son is 12 so he's at the age right now that if he can't have what he wants to eat - he doesn't want to go - He really misses the pizza places and eating chicken strips at restaurants...the rest he doesn't seem like he misses it - worse part is when you are traveling to find places to eat.

thank goodness they carry a lot of things in the grocery store..so can still make pasta dishes - the whole family eats gluten free except for the bread for sandwhiches. Just kills me tho how expensive things are. Spent like 6.00 a box for these gluten free crackers - which are awesome - but man - I buy them for my son cuz he likes that with ham and cheese on it, so don't think of the expense if he can eat them - but when he was first diagnosed you don't know how many loaves of that bread I threw away - and how many loaves I made and ended up tossing. Takes a while to get used to the different flavor and texture.

elye Community Regular
elye
Posted

You say you've only been gluten-free for three weeks. I have what may be considered good news for you, or perhaps not :rolleyes::huh: ...MANY celiacs who started out asymptomatic (I was a classic example--no GI or neurological symptoms at all), have had their lower intestines start to heal when eating gluten-free, and then will start feeling the symptoms after a while. This is what happened to me and a number of others on this forum. After I'd been on the diet for a couple of months, I started to know what everyone was talking about when getting accidentally glutened--bloating, cramps, diarrhea. So give it some time...if you start getting symptoms after eating gluten, it means you're healing, and that's good news!

mftnchn Explorer
mftnchn
Posted

Did I miss something? You said you were diagnosed with gluten intolerance, not that you were diagnosed as celiac. How were you diagnosed? What tests did you have?

If you are asymptomatic and don't have positive celiac blood tests or villi damage confirmed by a biopsy, then you might not have celiac disease.

If this is a gluten allergy, and you have no symptoms with or without avoidance (making sure it is absolute avoidance to test), then I would wonder about the validity of the tests. Allergy tests, skin or blood, or stool, are only for guidance. The ultimate test is dietary response.

Sarah8793 Enthusiast
Sarah8793
Posted

I agree with what elye said.

The longer you are gluten free, the easier it will be to tell when you get glutened. I am about a year gluten free now and I am just now beginning to get obvious gluten reactions.

Archived

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

Go to topic listing

  • 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
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,333
    • Most Online (within 30 mins)
      7,748
    Donna Chem
    Newest Member
    Donna Chem
    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.