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

DH and ongoing high antibodies despite strict gluten-free diet.. feeling hopeless

gffoodie
 Share

Recommended Posts

Raquel2021 Collaborator
Raquel2021
Posted
37 minutes ago, Russ H said:

Eggs and oats won't raise tTG2 antibodies. Are the oats certified gluten free?

I know that. Is the iodine in the eggs that can make DH worse. There are some postings about iodine and DH getting worse on the DH forums. I was just referring to the DH part of her post. Her antibodies must be high for some other reason. There is also a percentage of celiacs that react to gluten free oats. I am one of them. Everybody is different. 

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

Celiac.com Sponsor (A8-M):


gffoodie Rookie
gffoodie
Posted
  • Author
19 minutes ago, trents said:

Could this be a legitimate case of refractory celiac disease?

gffoodie, I understand you to say that you have never had any celiac symptoms apart from DH. Is this correct? Have you ever had an endoscopy/biopsy?

I am not sure.. my doctor wants to give it more time before making that assessment. I do get acid reflux (and always have) which I do not think is linked to my celiac, but I received an endoscopy to make sure I did not have a stomach ulcer when my acid reflux was really bad for a month and when they were in there they noticed the damage to my small intestine indicating celiac disease so they biopsied then I did blood work. I also had an endoscopy 4 years prior to that (due to the same GERD symptoms) and it was negative. 

trents Grand Master
trents
Posted
(edited)

Okay, so you are biopsy positive for celiac disease. Most with DH also have gut manifestation of celiac disease but a small percentage don't.

Have you ever tried a general immuno suppressant like prednisone to see if it pushes down those tTG-IGA numbers?

Edited by trents
Scott Adams Grand Master
Scott Adams
Posted
19 hours ago, Raquel2021 said:

Also don't trust spices. I react to paprika, cinnamon, cumin. Spices might have undeclared gluten. I hope I can have these again one day but for now I had to take them out.

Besides the risk of gluten in spices, at least one study has shown that there are spices that "cross-react" and trigger celiac-like symptoms in those with celiac disease:

 

knitty kitty Grand Master
knitty kitty
Posted
(edited)

@gffoodie,

Dairy can cause the same antibody production reaction as gluten.  A segment of casein, the protein in dairy, is the same as a segment in gluten.  It's called molecular mimicry.  

About half of people with Celiac react to dairy the same as to gluten.  

Try dairy free and see if symptoms improve.  

Yes, it is trial and error, but sharing what we've learned the hard way can remove some of the stumbling blocks for others on our journey.

Keep us posted on your progress!

Interesting Reading:

Mucosal reactivity to cow's milk protein in coeliac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

 

Edited by knitty kitty
Typo
Scott Adams Grand Master
Scott Adams
Posted

While it is true that some individuals with celiac disease may also have a sensitivity or intolerance to dairy (known as lactose intolerance), the reason is not molecular mimicry. Molecular mimicry refers to a situation where the body's immune system reacts to a foreign substance because it is similar to a component of the body's own tissues.

In celiac disease, the immune response is triggered by specific components of gluten, particularly gliadin, which is a protein found in wheat and related grains. The immune system of individuals with celiac disease recognizes these gluten proteins as foreign invaders and launches an immune response that damages the lining of the small intestine.

While there may be structural similarities between some proteins in casein (a protein in milk) and gluten, the immune response in celiac disease is primarily directed against gluten, not casein. The reactions to casein in some individuals with celiac disease are more commonly described as cross-reactivity or sensitivity rather than molecular mimicry.

The protein in dairy that some individuals with celiac disease may react to is called casein, not because of molecular mimicry with gluten, but because of the similarity in the structure of certain proteins.

Not all individuals with celiac disease react to dairy in the same way. Some people with celiac disease may be able to tolerate dairy without issues, while others may have lactose intolerance or a separate sensitivity to dairy proteins. Individual responses to both gluten and dairy can vary.

Beverage Proficient
Beverage
Posted

Doing any home remodeling? I got glutened bigly tearing into old walls.

Any pets? My pets eat gluten free, but I've gotten glutened petting neighbor's dog and forgetting to wash my hands. Also feeding their chickens got me, there are grains in the feed and dust from that was floating in their little house. 

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

Celiac.com Sponsor (A8-M):


Flash1970 Apprentice
Flash1970
Posted

Hi, you don't say whether your husband is gluten free and follows a strict diet.  If he doesn't,  you may be getting contaminated from him.  Even a small amount can hurt you.  Any ingestion will affect you.  If he drinks beer and you kiss him, you could be ingesting gluten that way.  If there's crumbs on the counter, and your food touches them you're getting gluten.  So many ways to get gluten.  No one understands because they can't see the physical symptoms.  

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
 Share
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.