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

Gluten Sensitivity To Full Blown Celiac !?!

NorthernElf

By NorthernElf
in Coping with Celiac Disease

Recommended Posts

NorthernElf Enthusiast
NorthernElf
Posted

A brief history...

My 'journey' began with sinus issues, after a history of stomach complaints from my teenage years on that was chalked up to IBS. The sinus problems started at 35 years of age, and were followed by headaches, joint pain & fatigue, irritableness, etc. I had xrays and a CT scan of my sinuses, tried various nasal sprays, had an allergy test - nothing worked. Thank God for the internet - I eventually found info on gluten sensitivity and celiacs. At about the same time, I developed GERD and roseacea. I take zantac daily and use a cream on my face to control the rosacea.

My doc gave me a transglutamase blood test (not the celiac panel) after I had mostly quit gluten. I had to wait just over 3 months to get an endoscope and by then I was gluten-free and the doc only ordered the scope to follow up on the GERD, so no biopsies were taken. I didn't know to keep eating gluten at this point -wish I had !

Anyway, my symptoms have increasingly gotten worse. I am mom in a family of 5 and cross contamination can be an issue. I did turf the breadmaker because the crumbs got everywhere and I was always feeling ill. A couple of days ago I ate some Terra chips, accidentally buying the Mediterranean flavor instead of the plain ones. In the time it took me to drive from one store to another I had eaten 2-3 handfuls, realized they were flavored, and read the label - "contains maltodextrin (wheat)". ARGH ! I spent the night and most of the next day with stomach cramps and nausea. Now, I seem to be able to handle some cross contamination but this was enough to give me quite a reaction, worse I've ever had.

So - in order to go to work last night I took a Reactine for my sinuses and a couple of Pepto Bismol tablets to stop the nausea & cramping...which worked for about 4-5 hours, enough to get me through. I also ate very light because food (or coffee) just started up the cramping again. Ugh.

Is this a typical development for celiacs ? I had always considered myself gluten sensitive. I know the transglutimase test is sort of one dimensional, mostly targeted at folks that have quite a bit of intestinal damage, which isn't the case for all celiacs. It's weird to me that my reactions are getting worse and I am gluten-free, except for the odd screw up or CC.

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

Celiac.com Sponsor (A8-M):


DebNC84 Apprentice
DebNC84
Posted
. It's weird to me that my reactions are getting worse and I am gluten-free, except for the odd screw up or CC.

I'm experiencing the same thing - gluten free since June of this year - it seems now I react more severely intestinally than I did before - my guess is that my gut is healing and just sensitive - your small intestine atrophies in later stages of celiac disease so I would guess that it just doesn't "feel" the gluten. Then when you begin healing... it more prone to knowing when the gluten is present. I'm not a doctor - but it makes sense to me.

hathor Contributor
hathor
Posted

It seems to be fairly common that one's reaction to a substance is stronger when it has been generally eliminated from one's diet. I know this is what has happened to me with gluten, casein, egg, and soy. (Don't get me started on yeast. I can't see a reaction whether I eat it or not.)

Archived

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

Go to topic listing
  • 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

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      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
      New (possible) celiac diagnosis

      By Judy M · Posted

      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
      Patiently Waiting to See Results

      By Scott Adams · Posted

      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
      Gluten free beer ?

      By Scott Adams · Posted

      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.
×
×
  • 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.