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

Can't Trace Symptoms Back To Anything

Becky A.

Recommended Posts

Becky A. Newbie
Becky A.
Posted

I have been celiac and gluten-free since Jan. 2006. I was pregnant from Feb - 3 weeks ago when we lost our baby due to Trisomy 18. My question is I am having all kinds of what I call "celiac attacks" and can't trace them back to anything. I start to feel quesy, my stomach starts grumbling really loud and I get this horrible grumble/cramps that start in my upper left side and slowly go down until I get horrible diarrhea. I cannot shake it. It's happening several times a week. I cook for myself and have been home and am 99% positive I haven't ingested gluten---has anyone had this? Any thoughts? Any tests I should have my GI run??

Please help!

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

I am very sorry you lost your baby, you must be heartbroken. I've lost a few, and know what you are going through.

Are you dairy free? You may be reacting to something other than gluten. Many foods, if you have an intolerance to them, can produce pretty much the same symptoms as gluten, including dairy, soy, rice, eggs, potatoes, just to name a few. Many people here couldn't figure out how they got 'glutened' without gluten, until they figured out that other intolerances were the culprit.

ravenwoodglass Mentor
ravenwoodglass
Posted
I have been celiac and gluten-free since Jan. 2006. I was pregnant from Feb - 3 weeks ago when we lost our baby due to Trisomy 18. My question is I am having all kinds of what I call "celiac attacks" and can't trace them back to anything. I start to feel quesy, my stomach starts grumbling really loud and I get this horrible grumble/cramps that start in my upper left side and slowly go down until I get horrible diarrhea. I cannot shake it. It's happening several times a week. I cook for myself and have been home and am 99% positive I haven't ingested gluten---has anyone had this? Any thoughts? Any tests I should have my GI run??

Please help!

I am so sorry to hear of your loss. Like many Celiacs I have been there also and I know how hard it is. Your system has been through a lot, you may be seeing an excaberation of your sensitivity. Is your home gluten free? You need to be real, real careful of cross contamination. Also make sure you have checked all your toiletries and all your meds including over the counter and scripts. IF you showed up positive on blood work you may want to ask for another celiac panel to check your ttg and see if you are still getting gluten, also have them run B12, folate and iron levels to check for continued absorption problems. I hope you feel better soon (((((((hugs))))))

Becky A. Newbie
Becky A.
Posted
  • Author

My home is not 100% gluten-free because my husband and 5 year old still eat gluten. I do have a dedicated cabinet for my food, my own pots /pans, utensils, etc. I don't know why I'm having these. It's so hard for me to think about giving up more than just gluten (like milk, etc). I've not tried that stuff yet--but when I really react--I can't trace it to milk or anything. I use Colgate toothpaste, Garnier Fructise shampoo---I don't really know the medical ingredients well enought to know if they are the culprets or not. Any thoughts???

happygirl Collaborator
happygirl
Posted

Becky-I'm so sorry about your loss.

Your symptoms sound like either a glutening, another food intolerance (either temporary or permanent), or just the fact that you aren't fully healed.

What are some of the foods/brands you are eating? Maybe we can help.

Best of luck.

KaitiUSA Enthusiast
KaitiUSA
Posted

Have you changed your products such as makeup and shampoo?

kbtoyssni Contributor
kbtoyssni
Posted

I know Colgate toothpaste is ok. Not sure about garnier fructise shampoo.

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

Celiac.com Sponsor (A8-M):


par18 Apprentice
par18
Posted
I have been celiac and gluten-free since Jan. 2006. I was pregnant from Feb - 3 weeks ago when we lost our baby due to Trisomy 18. My question is I am having all kinds of what I call "celiac attacks" and can't trace them back to anything. I start to feel quesy, my stomach starts grumbling really loud and I get this horrible grumble/cramps that start in my upper left side and slowly go down until I get horrible diarrhea. I cannot shake it. It's happening several times a week. I cook for myself and have been home and am 99% positive I haven't ingested gluten---has anyone had this? Any thoughts? Any tests I should have my GI run??

Please help!

Becky,

I went to a seminar two months ago and this situation was mentioned. The person was sure they had not eaten any gluten. The doctor asked if this person paid the bills. The response was yes. He asked if the envelopes were licked and the answer was yes. That was the source of this person's problem. The only time I accidentally ingested gluten was this way. I started spitting immediately and did not have a reaction. I think the point the doctor was making was sometimes things happen and we can't make the connection because we were not eating or drinking at the time. Do you handle the gluten items your husband or son eat?

Tom

Tom

chick2ba Apprentice
chick2ba
Posted

I'm beginning to think that cooking in a 90% gluten free kitchen will NOT do the trick. I was soo sick last semester and most of the summer, even after totally giving up gluten and dairy. My roommates continued to eat gluten and would leave crumbs everywhere. I was SUPER strict with cleaning to protect myself, but I would still get glutened at least twice a week, even when eating everything fresh. I thought I would just have to live with the pain and misery, since I could never figure out where the gluten was coming from.

But then I moved into another apartment. I gutted the whole kitchen (like, cleaned every drawer, cabinet, range, knobs, etc..) and put down new contact paper. I also rewashed my own pots and pans and wiped down all of my own belongings.

Now I get sick like once every two weeks, and the reactions are much milder!! It's like night and day what a TOTALLY 100% gluten free kitchen will do. I was surprised what a difference it made and how sick I could get from just touching contaminated doorknobs!

I hope you get to feeling better.

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.