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

Not Sure If I Am Celiac And Dont Want The Test


Guest tntownley

Recommended Posts

Guest tntownley

I have been gluten free now for about two months, i had a biopsy that came out fine, I had Hpylori but after two horrid bouts with some wicked antibiotic blends that seems to be gone.

I have had chronic loose stool and chronic abdominal bloating and pain most of my adult lfe, but it was tolerable.

This past year I have lost control of my bladder, had my gall bladder removed, been tested for lupus, and gone thru tests for liver disease, and colon disease, I am going in for a DC and hystoscpy (not sure of spelling) on Tues due to problems with my uterus, and I am diabetic, my blood sugars were uncondtrolable with all meds, I am taking meds for just about everything )last year at this time was just one med) I am falling apart. Well I went gluten free, my loose stools became more normal almost to constipation. my blood sugar is leveling out and I am feeling a bit better.

I have these clear blisters that itch like crazy and show up just about everywhere, the dr said it was excema, those have lessened but I still get them.

I dont know if I am gluten intollerant or Celiac, and I wont pursue an positve test, if I do, then I am labled with a disease that could make it hard to get insurance, and two... I feel better not eating it, so who cares if I have a label or not, I dont.

I have found that gluten is in so much it is no wonder so many of us are having symptoms, mderation is the key to food, and gluten is not in moderation any more, its in excess.

So I will continue to be gluten free just because I feel better. I also have tried to limit ingredients to 5, with no partial hydration. And I refue to eat chemical sugar.

I eat organic raw cane juce dehydrated.

Since I have eliminated so many of thise things I have lost wieght with out trying, and feel better.

So I could be called a Diabetic Celaiac but insted I call my self a consious eater.

If the pain isnt enough or problems from eating foods is not enough for you to change your diet, you will develop more problems I am sure of it, even if you are not diagnosed with celeac or other diseases.

I felt compelled to post this after reading so many post of folks who are unsure... 90% of the time the doc's are giving you and EDUCATED GUESS, it seems that every doc I went to thought it was something different and none ever did anything to make it better, I am not saying you should not seek medical attention, just understand they can only give you test results and an educated guess, or they can tell you its stress and send you out the door with out even trying.

YOU need to take your problems in your own hands, if eating gluten makes you sick, then in my oppinion you should stop, if it doesnt then you need to ask more question and get more assistance.

We think we need Dr's to give us the last word, I used to, but if it feels better go with it!

I hope I dont sound negative, but I know I was once where some of you are, and until I trusted myself and did not depend on others to clairify or agree with my claim, I was in a limbo, and it was not helping any.

I am hoping I helped, even if its just one of you, can feel a bit more confident in making choices that can better your life, no matter what anyone else says.

Gluten Free is good for me =).


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor

You don't need an official diagnosis if you don't want one. Dietary response is indicative of a problem.

The blister you are getting could be dermetitus herpetiformis. If you're still getting them you may want to double check personal care products for cc issues.

par18 Apprentice
I have been gluten free now for about two months, i had a biopsy that came out fine, I had Hpylori but after two horrid bouts with some wicked antibiotic blends that seems to be gone.

I have had chronic loose stool and chronic abdominal bloating and pain most of my adult lfe, but it was tolerable.

This past year I have lost control of my bladder, had my gall bladder removed, been tested for lupus, and gone thru tests for liver disease, and colon disease, I am going in for a DC and hystoscpy (not sure of spelling) on Tues due to problems with my uterus, and I am diabetic, my blood sugars were uncondtrolable with all meds, I am taking meds for just about everything )last year at this time was just one med) I am falling apart. Well I went gluten free, my loose stools became more normal almost to constipation. my blood sugar is leveling out and I am feeling a bit better.

I have these clear blisters that itch like crazy and show up just about everywhere, the dr said it was excema, those have lessened but I still get them.

I dont know if I am gluten intollerant or Celiac, and I wont pursue an positve test, if I do, then I am labled with a disease that could make it hard to get insurance, and two... I feel better not eating it, so who cares if I have a label or not, I dont.

I have found that gluten is in so much it is no wonder so many of us are having symptoms, mderation is the key to food, and gluten is not in moderation any more, its in excess.

So I will continue to be gluten free just because I feel better. I also have tried to limit ingredients to 5, with no partial hydration. And I refue to eat chemical sugar.

I eat organic raw cane juce dehydrated.

Since I have eliminated so many of thise things I have lost wieght with out trying, and feel better.

So I could be called a Diabetic Celaiac but insted I call my self a consious eater.

If the pain isnt enough or problems from eating foods is not enough for you to change your diet, you will develop more problems I am sure of it, even if you are not diagnosed with celeac or other diseases.

I felt compelled to post this after reading so many post of folks who are unsure... 90% of the time the doc's are giving you and EDUCATED GUESS, it seems that every doc I went to thought it was something different and none ever did anything to make it better, I am not saying you should not seek medical attention, just understand they can only give you test results and an educated guess, or they can tell you its stress and send you out the door with out even trying.

YOU need to take your problems in your own hands, if eating gluten makes you sick, then in my oppinion you should stop, if it doesnt then you need to ask more question and get more assistance.

We think we need Dr's to give us the last word, I used to, but if it feels better go with it!

I hope I dont sound negative, but I know I was once where some of you are, and until I trusted myself and did not depend on others to clairify or agree with my claim, I was in a limbo, and it was not helping any.

I am hoping I helped, even if its just one of you, can feel a bit more confident in making choices that can better your life, no matter what anyone else says.

Gluten Free is good for me =).

Makes perfect sense to me. Consider yourself fortunate and good luck.

Tom

Guest tntownley
The blister you are getting could be dermetitus herpetiformis. If you're still getting them you may want to double check personal care products for cc issues.

Thank you both for your resposnse, I am also new at this and I suspected DH with the water blisters, but what did you mean I need to check personal care product for CC?

Could you elaborate please =) thanks!

Tina

Lisa Mentor

Tina,

I'll step in if you don't mind. Personal care products can be just as important as food. Shampoos, lotions, toothpaste, lipstick, lip balms, make-up, all have the possibility to find their way into your mouth which can trigger the gluten response.

Although, people do not eat shampoo, but it is highly likely that it can get into your mouth during a shower.

In addition, shared toasters, old wooden spoons, wooden cutting boards, scratch non-stick pots and pans all can hide gluten.

If you need some names of gluten free products to get you started, feel free to ask.

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.