Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

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

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
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

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

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

Have you changed your products such as makeup and shampoo?

kbtoyssni Contributor

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
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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,293
    • Most Online (within 30 mins)
      7,748

    Jschwind351
    Newest Member
    Jschwind351
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      I should point out that iodine is known to exasperate dermatitis herpetiformis blistering. It can take several months or even years of a strict gluten-free diet for the IgA-TG3 deposits to clear from the skin. After the skin completely heals, iodine may no longer trigger symptoms. "The circulating antibodies disappear and skin symptoms resolve as a result of gluten-free diet but the cutaneous anti-TG3 IgA deposits may persist for several years. " Missing Insight Into T and B Cell Responses in Dermatitis Herpetiformis
    • Wheatwacked
      I get my supplements f from Pipingrock.com close to 10 years now. Good quality, prices, ship  worldwide.  My 25(OH)D is at 93 ng/ml after 10 years taking. In 2019 it had still only gotten to 47 ng/ml.  Celiac Disease causes low D from malabsorption. High Potency Vitamin D3, 10,000 IU, 250 Quick Release Softgels 4.8 out of 5 stars, average rating value. Read 1662 Reviews. Sale price$10.70 Regular price$21.39 Basil Carcinoma.  Basil cell carcinoma is the result of failure of the immune system to recognize fauty DNA in cells. It is iodine that causes apoptosis, killing old and defective cells.  Not enough vitamin D to control the immune system and not enough iodine to do the job.  I had a sebaceous cyst, my seventh facial cyst, in 2014.  It started looking like a blackhead, but grew (Third eye blind).  All my 7 previous cysts had drained and healed normally.  When I drained this, there was a hairball the size of a BB and it would not heal.  This was one of many reasons I started Gluten Free.  I chose to not have it surgically removed, because I realized I had nutrient deficiencies that were causing slow healing.  By 2015 I realized it was Iodine deficiency and started eating seaweed, which helped my muscle tone, but not the healing.  The warnings on iodine from the gov't were so scary, I was afraid to use them.  Turns out it is all based on one study on rats in 1948. "The Wolff-Chaikoff Effect:   Crying Wolf?"   Last year I started taking 600 mcg a day and it is reversing my glaucoma and fixing muscle tone, hair nails and skin all returning to healthy,  Brain fog, which had improved dramatically on Gluten Free diet, my thinking got even clearer with the iodine. Finally the cyst my bellwether since 2014, began to heal.  So I had it biopsied  in July 2025, came back basal cell carcinoma.  With the Iodine (Piping Rock Liquid Iodine 12 drops a day 😃 = 600 mcg) is healing normally and I have a follow up in December.  By then it will have healed.  It is scabbing over like a normal wound.  In 1970 the US stopped using Iodine as a dough modifier.  The daily intake of Iodine dropped in the US 50% between 1970 and 1984.  Also, prescriptions for thyroxine have doubled.  150 mcg the RDA is not enough for anything more than preventing goiter.  Growing up in the sixties just 2 slices of bread had 200 micrograms of iodine, add a glass of milk and iodized salt and you're at 300 mcg a day.  The safe upper tolerable limit in the US is 1000 mcg.  In Japan it is 3000 mcg and the average Japanese, traditional diet, averages above 1000 mcg.  Remember when in the 80's our schools were loosing competitions to Japanese schools?  Iodine.  And Japan has 50% less breast cancer.  Nicer hair nails and skin.  It the US our kids are getting dumber, more flabby.  Fertility is dependant on enough iodine, also. 600 mcg.
    • numike
      69yo M I have had skin cancer basal  I use a higher quality Vit D https://www.amazon.com/Biotech-D3-5-5000iu-Capsules-Count/dp/B00NGMJRTE
    • Wheatwacked
      Your high lactulose test, indicating out of control Small Itenstinal Bacterial O,vergrowth is one symptom.  You likely have low vitamin D, another symptom.  Unless you get lots of sun.   Celiac Disease is a disease of malabsorption, often leading to subclinical vitamin deficiencies.  A lot of people have these symptoms just before an acute phase of Celiac Disease.  Each of the symptoms can have multiple causes that are not celiac disease,  but when you start having multiple symptoms,  and each symptom is treated as a separate disease,  you have to think, maybe these are all one cause. celiac disease. There is a misconception that Celiac Disease is  a gastrointestinal disease and symptoms are only gastro related.  Wrong.  It is an autoimmune disease and has many symptoms that usually are disregarded.  I made that mistake until 63 y.o.  It can cause a dermatitis herpetiformis rash,  white spots on the brain.  It caused my alcoholism, arthritis, congested sineses, protein spots on my contacts lenses, swollen prostate, symptoms that are "part of aging". You may be tolerating gluten, the damage will happen. Of curiosity though, your age, sex, are you outside a lot without sunscreen?  
    • trents
      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
×
×
  • Create New...