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

Sometimes I Wonder If I Don't Have Celiac Disease


shai76

Recommended Posts

shai76 Explorer

I know I am allergic to wheat and oats. When I would eat those things I would have asthma attacks and hives, but not too terrible stomach problems. Sometimes a belly ache, but rarely any D. I am just confused. The first time I had a blood test a couple years ago the doctor said it was slightly positive, but my new doctor showed it to me and it said "NEGATIVE." I saw a GI doc because I had blood and mucus in my poop (I know, gross, but you all are probably used to it so what the heck), which my family doc thought was from my food allergies. They said I have positive celiac antibodies, but the biopsy was fine in my small intestine. So they said I don't have it, but I have a predisposition for it. My ENT did more extensive allergy testing and found out the cause of my asthma, hives, and swollon esophagus was wheat, as well as oats and other foods (I've know I was allergic to milk and eggs for years). My ENT says it doesn't matter if I have celiacs or not because I am allergic to those things anyway, but I would love to just know, you know? I really want to know if this is why I have all these food allergies and if being gluten free means some day I can eat those others things?

Plus I have to challenge for my food allergies all the time, and if I have celiacs I don't want to challenge that and run the risk of re-deloping my other food allergies if I end up getting rid of them. Anyone else have similar problems?


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



Celiac.com Sponsor (A8-M):



jnclelland Contributor

Well, you could challenge with rye and/or barley. If you can't tolerate those, then does it really matter whether or not you're celiac? Either way, you have to avoid the gluten-containing grains, right?

Jeanne

penguin Community Regular

Food allergies are bad news and can get worse with each exposure. Your athsma attacks could turn into anaphalaxis. Not to scare you, it's just not something I'd screw around with.

It doesn't matter if you have celiac, does it? If your food allergies ever get better (and you should only test under the supervision of a doctor), then worry about celiacs. Your gluten intake is nil now, and isn't likely to change any time soon.

nikki-uk Enthusiast

When you had your biopsy was you avoiding Wheat and Oats already?(as you experience allergic reactions to them).

If you were,then that would explain the negative result .

Ok,positive antibodies to me =celiac disease.

I would imagine if you carry on eating wheat and oats,you would eventually get a 'positive' biopsy-but you know they make you ill,and would you really want to put your health at risk by doing that?

Some docs are sooo reluctant to give a diagnosis of celiac disease without the 'gold standard' definition (positive biopsy) and actually think they are doing you a favour-by not condemming you to a gluten free diet for life.

Whatever happened to preventative medicine?? :huh:

I really don't like the sound of you having to do food challenges .If you are getting anIgE (allergic) reaction to certain foods,then this could seriously put your health at risk.

There are plenty of people on this board who have been given a diagnosis of celiac disease by their (more enlightened)docs just from positive antibodies.

BTW,do you ever get a reaction from Rye?

Good Luck :)

tarnalberry Community Regular

as has been noted, you can test with barley and rye. barley would probably be easiest, as you can get pearl barley from the store and cook it up as a side dish and eat it. it's harder to find rye bread without wheat, though I believe you can get rye crackers without wheat in them.

Ursa Major Collaborator

The REAL, black, coarse pumpernickel bread (the German kind) is made from rye without wheat. Try eating that as well as barley. And while you're at it, have some for me, it used to be my favourite bread!

CarlaB Enthusiast

Have something malted for me!! Vanilla malt ... malted milk balls ... yum. :D


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



Celiac.com Sponsor (A8-M):



shai76 Explorer

Well, I had some spelt bread last month and I had a violent reaction to it. I even thought I was going to crap my pants.

Ever since I was a kid I would get tummy aches, at least once a month, and feel like I have to go and not be able to and then when I finally did I couldn't stop. I don't know if that was from my food allergies, or a sign of celiac disease, but it has stopped since I have eliminated all the foods I tested positive for on my allergy test. The problem is I stopped all allergens and gluten at the same time, so I don't really know. Being that I am class 2 or more for most of my allergies I don't want to risk trying wheat for awhile. I'm scared to use the epipen, and I carry benadryl wherever I go because I am anaphelectic to mold spores.

I'm not even allowed to eat things with yeast in it because I am so allergic, so I can't eat anything malted. Most breads are out of the question. Even those rice breads have yeast. I tried one that didn't once and it tasted like cardboard.

A couple problems I have believing it is I am overweight (I am 5'4 and 190 pounds), I've always had a difficult time losing pounds. It makes it hard for me to believe I have a malabsorption problem, even though my sisters doc says she had a 400 pound woman with anemia and celiac disease. And I see lots of people here that have problems gaining weight and I just have a hard time making sense of it.

Why do some people not lose weight from celiac disease? Why are some of us having problems taking weight off, not putting it on?

tarnalberry Community Regular
Well, I had some spelt bread last month and I had a violent reaction to it. I even thought I was going to crap my pants.

Spelt is very closely related to wheat, and hence not suitable for testing with. (Some who are allergic to wheat cross-react with spelt. It looks like you do.)

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. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    2. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    3. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,368
    • Most Online (within 30 mins)
      7,748

    GStrutton
    Newest Member
    GStrutton
    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
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
×
×
  • 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.