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

When


FootballFanatic

Recommended Posts

FootballFanatic Contributor

I first started having symptoms October 06, and I got diagnosed in July. It's December. Another month gone and I still have not gone a whole day without feeling terrible. It's just getting worse and worse. I'm living off xanax and pepto. My grades and my social life have gone to hell because I don't want to leave my house, but I don't want to be in my house either.

I just want to break out of my skin. I don't want to die but I don't want to live this life.

What's wrong, There is NO way I'm getting gluten. I have replaced every single thing I cook with, I only eat 3 different meals that are all gluten free. I wash my hands like gluten is a poison on everything I touch. I moved out of the kitchen and do everything in my room - except when i use the stove and I cover my pot that I'm cooking with.

When am I going to get better?


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Maybe you are not eating a balanced diet with your 3 meals. List what you are eating and we can suggest some healthy/balanced meal choices.

AndreaB Contributor

Have you looked into other food intolerances? Soy and dairy are often culprits....especially at the beginning if you've had damage to the instestines.

If you continue to have fewer things you can eat then you'd really need to look into the reason behind it.....which could be one of many things. For my family it's metals, for many others it's lyme, parasites, viruses. There is almost always something behind numerous intolerances, the tricky part is finding what.

If it's just a few foods then you could always reintroduce them at a later time.

If you've not had a good day since you started the diet......absolutely no improvement, then I would suspect something else along with the gluten intolerance/celiac that is keeping you down.

happygirl Collaborator

Are you under a doctor's care? I would guess that you are having "beyond gluten" problems based on what you are describing.

sickchick Community Regular

I am going Soy & Dairy free as of today....

I feel for ya FF...

Breathe and keep positive. You can get control it just might take a few hits or misses

I can't take Pepto, it has no effect on me at all...nor Immodium

:P

loraleena Contributor

I would seriously look into candida overgrowth. Try taking probiotics. Find a good digestive enzyme to take before meals. Maybe get checked for small bowel bacteria as well. And ditto the above suggestions about other intolerances. Xanax and pepto will only worsen your condition in the long run. They are bandaids. Pepto also constipates you as well.

Offthegrid Explorer

Didn't somebody just post somewhere that Xanas is not gluten-free?


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



Celiac.com Sponsor (A8-M):



Yenni Enthusiast

Hang in there. Like others have mentioned, maybe you have other food intolerances as well.

It took me a long time to start feeling better. Months before I noticed some changes actually. It came on gradually and one day it hit me I wasn't as tired any more. Then later I realized other symptoms were better or less too.

Now, over a year after I got my diagnosis I feel pretty good. Kinda little like my old self.

It can take time to heal and some feel better sooner than others. Just do as best as you can and you will get better. Make sure to read and learn about the diet. Learn from mistakes and such.

It will get better. I know how hard it can be.

Carafate has helped me lots when I feel sick. I do get cross-contaminated now and then (thank Gd not as often as it used to be) and the Carafate always helps me.

ENF Enthusiast
Didn't somebody just post somewhere that Xanas is not gluten-free?

Just a reminder:

Xanax contains gluten, as does the generic version of it by Greenstone, a subsidiary of Pfizer.

GlutenWrangler Contributor

Well there you go!

scotty Explorer

i don't take meds---eexcept prilosec--wondering if i should stop that---all others gave me trouble, even probiotics eventually bothered me---oh but i don't want the flaming gut roaring up my esophagus again......

JNBunnie1 Community Regular
Just a reminder:

Xanax contains gluten, as does the generic version of it by Greenstone, a subsidiary of Pfizer.

Just wanted to make sure you got this info, Football Fanatic. How uncool is that? Hope you can just stop taking it.....

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

      Related issues

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

      Airborne Gluten?

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

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,246
    • Most Online (within 30 mins)
      7,748

    IRENEG6
    Newest Member
    IRENEG6
    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

    • 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!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.