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

[Raquel2021]

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. 

[gffoodie]

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]

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 January 10 by trents

[Scott Adams]

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]

@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 January 13 by knitty kitty
Typo

[Scott Adams]

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]

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. 

[Flash1970]

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.