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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.