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

Severely Glutened...


JenHarris

Recommended Posts

JenHarris Apprentice

I got cross contaminated from the peanut butter jar and didn't have symptoms until the middle of the night. Now I feel like I've got stomach flu... complete with body aches, terrible backache, horrible cramping and nausea. I'd made it over a month without even getting slightly glutened. :( (I was on a gluten challenge til the middle of April and then went back to gluten free but got glutened at a restaurant by salad dressing.)

I'd almost forgotten how bad I can feel. THIS SUCKS!!! I only discovered I'm gluten intolerant about 6 months ago (although I've had the symptoms all my life.) We've discovered my 2 year old son is gluten intolerant as well, so at least we caught it early for him.

I guess I can be thankful that my throat hasn't swelled up like it does sometimes, but at least that goes away with benadryl. I haven't had body aches and the whole list of symptoms since April when I was constantly eating gluten for the challenge.

Just needed to vent a little. I get so frustrated I want to cry. I'm still getting used to the fact that there are so many things I can't eat anymore without checking labels, and it's hard to realize that I can't trust anybody when they say something is gluten free. My in-laws were visiting and contaminated the jelly jar right in front of me and I didn't notice until my husband caught me before I put it on my gluten-free bread. I mean it was a lesson for them how sensitive I am and they were nice and understanding about it, but it's still hard to constantly be educating other people.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

I got cross contaminated from the peanut butter jar and didn't have symptoms until the middle of the night. Now I feel like I've got stomach flu... complete with body aches, terrible backache, horrible cramping and nausea. I'd made it over a month without even getting slightly glutened. :( (I was on a gluten challenge til the middle of April and then went back to gluten free but got glutened at a restaurant by salad dressing.)

I'd almost forgotten how bad I can feel. THIS SUCKS!!! I only discovered I'm gluten intolerant about 6 months ago (although I've had the symptoms all my life.) We've discovered my 2 year old son is gluten intolerant as well, so at least we caught it early for him.

I guess I can be thankful that my throat hasn't swelled up like it does sometimes, but at least that goes away with benadryl. I haven't had body aches and the whole list of symptoms since April when I was constantly eating gluten for the challenge.

Just needed to vent a little. I get so frustrated I want to cry. I'm still getting used to the fact that there are so many things I can't eat anymore without checking labels, and it's hard to realize that I can't trust anybody when they say something is gluten free. My in-laws were visiting and contaminated the jelly jar right in front of me and I didn't notice until my husband caught me before I put it on my gluten-free bread. I mean it was a lesson for them how sensitive I am and they were nice and understanding about it, but it's still hard to constantly be educating other people.

Have 2 jellies, butter tubs, PB, etc. Put some bright colored tape on the gluten-free one & put your name on it. Anyone who misses hot pick tape with Jen on it is just inconsiderate or mean. Probably shouldn't be in your house. :blink:

lovesaceliac Newbie

I am so sorry. I have felt the same frustration (cried some of the same tears) as I've tried to prevent cross contamination issues from making my gluten-free husband so ill. He's been gluten-free for two years and last year I finally convinced him that the entire house needs to be gluten-free as well. We do great at home, but even when we bring our own food to eat dinner with family he inevitably comes home sick. We're planning a trip to visit family next weekend and I'm already anxious about it. We've never made it through a trip w/o him gettin glutened at least once. So discouraging.

JenHarris Apprentice

Weird thing is, just after writing the above post I started chilling and running fever. Ran fever (little over 100) for about 16 hours, couldn't eat, and then fever was gone. Woke up yesterday morning feeling better except for a headache and my stomach's still very very sensitive, and I had a round of extremely loose stool yesterday too. Stomach is still sensitive today. I am starting to think the fever may have been gluten related???

Can super sensitive gluten intolerant patients run fever with being glutened?

As of right now I've only been diagnosed Gluten Intolerant. My initial round of Celiac testing came back negative (including biopsies, but only 2 were done). I was not happy with the first doc at all and went to a new GI doc. My new doctor says I wasn't on a proper gluten challenge and the right blood tests weren't done to be completely conclusive. He wants to redo all of the testing (including biopsies- getting 7 this time) and go ahead with the genetic test. I'm not starting that all until this fall.

By the way.... I hadn't been out of the house to be exposed to anyone in the previous 72 hours, and I had not been around anyone who was sick at all in the past 2 weeks that I know of.

dilettantesteph Collaborator

I am so sorry. I have felt the same frustration (cried some of the same tears) as I've tried to prevent cross contamination issues from making my gluten-free husband so ill. He's been gluten-free for two years and last year I finally convinced him that the entire house needs to be gluten-free as well. We do great at home, but even when we bring our own food to eat dinner with family he inevitably comes home sick. We're planning a trip to visit family next weekend and I'm already anxious about it. We've never made it through a trip w/o him gettin glutened at least once. So discouraging.

You wonderful woman. Your husband is so lucky. All our worrying and persuading has to come from the other direction. It isn't taken very well either.

I agree that with super sensitives the whole house needs to be gluten-free. We tried very hard to do it shared and just couldn't.

  • 3 weeks later...
Marz Enthusiast

Can super sensitive gluten intolerant patients run fever with being glutened?

I get a low grade fever when I get glutened, either a few hours after, or the next day sometime, along with chills and the big D. Low grade fever can continue even when D has stopped, it's quite weird. Before I went gluten free, I kept on getting the chills/fever feeling, and wondering what the hell was wrong with me!

melikamaui Explorer

Weird thing is, just after writing the above post I started chilling and running fever. Ran fever (little over 100) for about 16 hours, couldn't eat, and then fever was gone. Woke up yesterday morning feeling better except for a headache and my stomach's still very very sensitive, and I had a round of extremely loose stool yesterday too. Stomach is still sensitive today. I am starting to think the fever may have been gluten related???

Can super sensitive gluten intolerant patients run fever with being glutened?

My son runs a fever when he has been contaminated. Sometimes they are even pretty high. Scares me to death!


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



Celiac.com Sponsor (A8-M):



jebby Enthusiast

My son runs a fever when he has been contaminated. Sometimes they are even pretty high. Scares me to death!

[/quote

I run a fever for a few days after getting glutened too. Usually 100.8 to 101F.

Skylark Collaborator

Luv, you might just have a bout of stomach flu. Remember that not everything is gluten.

Feel better!!!

  • 2 weeks later...
Laurarose Newbie

I got cross contaminated from the peanut butter jar and didn't have symptoms until the middle of the night. Now I feel like I've got stomach flu... complete with body aches, terrible backache, horrible cramping and nausea. I'd made it over a month without even getting slightly glutened. :( (I was on a gluten challenge til the middle of April and then went back to gluten free but got glutened at a restaurant by salad dressing.)

I'd almost forgotten how bad I can feel. THIS SUCKS!!! I only discovered I'm gluten intolerant about 6 months ago (although I've had the symptoms all my life.) We've discovered my 2 year old son is gluten intolerant as well, so at least we caught it early for him.

I guess I can be thankful that my throat hasn't swelled up like it does sometimes, but at least that goes away with benadryl. I haven't had body aches and the whole list of symptoms since April when I was constantly eating gluten for the challenge.

Just needed to vent a little. I get so frustrated I want to cry. I'm still getting used to the fact that there are so many things I can't eat anymore without checking labels, and it's hard to realize that I can't trust anybody when they say something is gluten free. My in-laws were visiting and contaminated the jelly jar right in front of me and I didn't notice until my husband caught me before I put it on my gluten-free bread. I mean it was a lesson for them how sensitive I am and they were nice and understanding about it, but it's still hard to constantly be educating other people.

I am very new to this, was just diagnosed two months ago and I am having the hardest time. I am beginning to feel like there is gluten everywhere. it seems worse now that I know. I have chronic hay fever and want to cry all the time, but I am too exhausted. Please tell me its gets better.

dilettantesteph Collaborator

It gets better. I felt like giving up on life pretty often at the beginning because it is so hard and I kept getting glutened. Plus, I think my brain was messed up from all that gluten. If I hadn't had children depending on me I might have done something about it.

Now life is beautiful and I feel like I have the energy and enthusiasm of a child.

Hang in there. It will get better!

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. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

    2. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

    3. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    4. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,252
    • Most Online (within 30 mins)
      7,748

    Judy Solomon
    Newest Member
    Judy Solomon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
×
×
  • 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.