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

Struggling


Magda

Recommended Posts

Magda Newbie

Hi everyone, 

 

ive been gluten free for 3 years now (presumed coeliac as have all the symptoms just I was already gluten-free when they tested)  and usually I am so disciplined in what I eat. I have been super sensitive for a while, if I eat anything cross contaminated i vomit, my face puffs up and my mood changes also b12 and folic deficient. However I don’t know what’s happened but go some reason I can suddenly eat a bit of gluten and I’m not that bad? I still get moody and puffy but I don’t vomit or anything, the thing is though I’ve become moody again from eating it but I can’t seem to get my head back on track! I’m traveling at the moment so It’s harder for me to get the proper food but still it’s not worth it as each morning I wake up feeling groggy , promise I won’t do it again and then come night time I binge. I don’t know why I’m doing it but I was hoping I could get a bit of support that might scare me back into my diet! Is there a reason I can suddenly tolerate a little bit of gluten or am I going to damage myself again? 

 

Thanks everyone ! 

 


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

If you have celiac disease it doesn't go away. Symptoms may change but the damage is still being done.  Have you been tested for wheat allergies?  A puffy face could be an allergy symptom.  It could be a celiac reaction too though.  Dang celiac disease symptoms can vary widely.

cyclinglady Grand Master

Only YOU can decide if you are going to maintain the diet which means being strictly gluten free.  A hassle for sure when traveling, but that is the way it is.  Consider learning to fast to help you avoid situations where you do not have access to safe food or carry gluten-free non-perishable food with you at all times.  

While I am diagnosed, my hubby is not.  He went gluten-free 12 years before my diagnosis.  The first year was hard, but after that, he never cheated and he took great pains to avoid gluten.  It can be done.  

Consider a gluten challenge (12 weeks of consuming gluten before the blood tests — entire panel even if you pay for it yourself).  Maybe you need a formal diagnosis.  

It is choice.  Your choice.  

 

Beverage Proficient

Magda, I am so sorry to hear you are having so much trouble sticking with being gluten free.  You might investigate why you are either in denial or if it's a rebellion thing. 

Just go hang around someone with dementia or alzheimer's disease...  yea, that was my Mom's fate because she was not diagnosed, but we found classic symptoms all over her medical records...after she died.

I have 2 friends with Celiac's that was not diagnosed for a long time that then got fibromyalgia .... oh boy, is that a fun one to have ... NOT.  One had pain so bad she would hit her head against the wall until her head and the wall were all bloody, just to have something else to think about because the other pain was so bad.

How about my step son Type 1 Diabetes and refuses to go gluten free, and he almost scratches off his skin every few months from DH, then has to be on prednisone all the time, which is so good for you...NOT.

How about this wonderful older lady friend of mine, crazy, life loving, full of energy, always had that glint in her eyes to do something to get in trouble, always the grand kids favorite, whose sister has Celiac's, doctors never tested her in spite of classic symptoms and family history.  She finally got confirmed with Celiac's, but unfortunately also MS and I haven't seen that glint in her eyes for awhile now, shakes so bad she can't get into anymore trouble unfortunately.

Print out a list of all the things that are connected to Celiac's and carry it around with you; pull it out every time you get a crazy urge to eat gluten.  These diseases happen to real people.  Seriously, it's a no brainer.

By the way, I did not need the endoscopy to confirm I had it in order to commit to going gluten free. I didn't even have any intestinal symptoms, but my organs were failing, serious life threatening asthma, and I was dying. Finally a naturopath in 15 minutes figured out what doctors couldn't over decades.  My blood tests were positive on all the glutens, DNA test positive, and response to gluten free diet was amazing (and all the asthma GONE now). I'm 63, diagnosed at 58, probably had it since I was 19.  Don't feed your body gluten and then be messed up so bad like me.  It's been almost 5 years now since going gluten free, but because I was undiagnosed for so long, the climb back is a long one.  I'm committed to restoring my health bit by bit and making what's left of my life as healthy as possible and not tempt the fates to get those other nasty diseases. 

 

 

 

Richard D Rookie

I'm going to second GFinDC and say this doesn't sound like Celiac, or at least prototypical Celiac.  Celiac disease symptoms occur in the small intestine.  Usually that means you don't have any symptoms at all for a little while (for some people, 20-30 minutes, others an hour or two), but during that time, your body is working up an autoimmune reaction.  That usually means two things happen: 1) extreme unexpected fatigue from your body trying to attack itself and 2) your body doing what your body always does when something is "wrong" in your digestive track, i.e., get ready to shove everything you've eaten recently out the other end.  Sometimes that includes vomiting too, but it'd be unusual for it to happen without a delay.  But it'd be very, very unusual to get sick sometimes and not other times.  That points to misdiagnosis, i.e., you're reacting to commonly eaten with gluten but is not actually gluten.

And if you're getting immediate reactions in your stomach, i.e., your stomach feels bad within a minute or two of eating, then you much more likely are allergic to something you are eating.  Allergies are much worse than Celiac in some ways, because whereas Celiac just makes you want to die, allergies can actually kill you.  :)

The most common allergy for people who think they have Celiac disease is a wheat allergy, but if you can sometimes eat wheat and sometimes can't, it's probably something else.  You could for example be allergic to specific pesticides or herbicides commonly used in wheat fields, so sometimes they get washed off and sometimes they don't, depending on the brand.  You could be allergic to some other additive, like a food preservative.  I would strongly recommend writing down every single time you eat something with gluten, including brand names, and then recording when you get sick and when you don't.  Show that to a gastroenterologist, and you might figure out what's actually hurting you.

Some people, including a lot of people on this forum, will just go fully gluten free, since that does stop the problem.  If you're allergic to a pesticide used on wheat and stop eating wheat, you're going to get better, even if it's not Celiac disease causing the problem.  But if you're having trouble going fully gluten free, or you just really want to be able to eat whatever your body will let you eat, then you owe it to yourself to figure out what the problem really is.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748

    MLucia
    Newest Member
    MLucia
    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.