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

Maybe Not Celiac?

minton

Recommended Posts

minton Contributor
minton
Posted

Okay so yes my symptoms since birth fit celiac disease, but given my genetic history (to date nobody in my family even carries the genes much less has symptoms), and a few other things, I'm wondering if I should try reintroducing gluten?

Here are things bringing me to wonder:

-There are major case studies about ingesting gluten via dust and skin contact. I owned a horse the last 9 years of my life and I hand mixed his grain (gluten), practically rolled in barn hay and dust with him, and honestly, I was healthier before he passed away, forcing me to get out of the horse world.

-My symptoms are back and I'm sick again like hell but my only diet change is my inability to afford my raw milk for the last 3 weeks or so. I am still gluten-free though.

-I was never tested. No biopsy, blood, or genetics. The doctor just took my medical history and said it fit celiac so I should start the diet.

-The genetics of course

-My parents and I cook using the same utensils. They eat gluten, I don't and the cross contamination has never been an issue. Ever.

-my symptoms started coming back after i returned dairy to my diet, but disappearred again when I switched to raw milk. My initial start going gluten-free was also dairy free.

Is it possible I have a dairy allergy and not celiac? Or something else that acts similar to celiac? I plan on asking my doctor at next visit but I would love opinions. Should I try adding gluten back in but stick to only raw milk products? Any suggestions or ideas would be appreciated.

Sidenote: I'm not anti-celiac, but it's been 2 years and I'm still pretty sick...

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I noticed you have DH is that still active? If it is then you may not be as safe sharing a kitchen with gluten eaters as you think you are. You say you are sure you are not being glutened but if the DH is active you are.

minton Contributor
minton
Posted
  • Author
I noticed you have DH is that still active? If it is then you may not be as safe sharing a kitchen with gluten eaters as you think you are. You say you are sure you are not being glutened but if the DH is active you are.

As I said in the DH thread, it was said it probably was DH. I have not been eating at home too much lately. When I do, it hasn't been cooked. I will thaw out gluten-free brownies on the counter and eat the or something but I haven't been home enough to cook.

ShayFL Enthusiast
ShayFL
Posted

If you still have the DH or it is coming back....get it biopsied. Super easy and not painful. 10 minutes at the Dermo. Genes mutate. You could be the first one if EVERYONE else has been genetically tested in your family and dont have Celiac Genes. PLUS a very small % of people have GOLD STANDARD DX Celiac without either DQ2 or DQ8. So I wouldnt rule it out just yet.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    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

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Finding gluten free ingredients

      By trents · Posted

      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
    • knitty kitty
      Gluten related ??

      By knitty kitty · Posted

      @Colleen H, I have had similar reactions and symptoms like yours.  I started following the low histamine Autoimmune Protocol diet developed by a doctor with Celiac Disease herself, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, is very helpful in understanding what's going on in the body.   Not only do you have antibodies attacking the body, there are mast cells spreading histamine which causes inflammation.  Foods also contain histamine or act as histamine releasers.  Our bodies have difficulty clearing histamine if there's too much.  Following the low histamine AIP diet allows your body time to clear the excess histamine we're making as part of the autoimmune response, without adding in extra histamine from foods.  High histamine foods include eggs, processed foods and some citrus fruits.  The AIP diet allows meat and vegetables.  No processed meats like sausage, luncheon meats, ham, chicken nuggets, etc. No night shades (potatoes, tomatoes, peppers, eggplant).  No dairy.  No grains.  No rice.  No eggs.  No gluten-free processed foods like gluten free breads and cookies.  No nuts.  No expensive processed gluten-free foods.  Meat and vegetables.  Some fruit. Some fruit, like applesauce, contains high levels of fructose which can cause digestive upsets.  Fructose gets fermented by yeasts in the gastrointestinal tract.  This fermentation can cause gas, bloating and abdominal pain.   The AIP diet changes your microbiome.  Change what you eat and that changes which bacteria live in your gut.  By cutting out carbohydrates from grains and starchy veggies like potatoes, SIBO bacteria get starved out.  Fermenting yeasts get starved out, too.  Healthy bacteria repopulate the gut.   Thiamine Vitamin B 1 helps regulate gut bacteria.  Low thiamine can lead to SIBO and yeast infestation.  Mast cells release histamine more easily when they are low in Thiamine.  Anxiety, depression, and irritability are early symptoms of thiamine insufficiency.  A form of thiamine called Benfotiamine has been shown to promote intestinal healing.   Thiamine works with the seven other B vitamins.  They all need each other to function properly.   Other vitamins and minerals are needed, too.  Vitamin D helps calm and regulate the immune system. Thiamine is needed to turn Vitamin D into an active form.  Thiamine needs magnesium to make life sustaining enzymes.  Taking a B Complex and additional Benfotiamine is beneficial.  The B vitamins are water soluble, easily lost if we're not absorbing nutrients properly as with Celiac Disease.  Since blood tests for B vitamins are notoriously inaccurate, taking a B Complex, Benfotiamine, and magnesium Threonate, and looking for health improvements is a better way to see if you're insufficient.   I do hope you will give the low histamine AIP diet a try.  It really works.
    • Kara S
      Finding gluten free ingredients

      By Kara S · Posted

      Hello, my family is very new to Celiac Disease so forgive me for asking what Warrior Bread is and is there a recipe for it online?
×
×
  • 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.