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I ate 0.04 g of bread


Rita06

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Rita06 Rookie

I have an unofficially diagnosed, apparently immune disease, which includes reacting to gluten. I react to gluten with loose stools, gas, bloating, and especially with dizziness, anxiety etc.  At the beginning I had diarrea for a year and it gradually subsided (with the help of copious amount of homemade yogurt) , but was followed by the neurological symptoms. It looks like a type of hypersensitivity to food. Type II (antibody related) or IV (cell mediated). It probably is type IV because  at times I have high eosinophils. So I read that there is oral immunotherapy for type IV hypersensitivity to drugs (so why not for food?). There has been a trial where oral immunotherapy to gluten coupled with helminth therapy, succeeded in treating celiac. I don't host helminths, but all they do is dampen immune overreaction. There are other healthy ways to achieve this for the gut and brain (sleep, exercise, less food additives, etc.). 

So I ate 0.09 gram of bread three days ago. The next day I had dizziness. Therefore I took half that today, 0.04 grams. It is around 5 mg of gluten. They say that celiacs react to doses above 10 mg of gluten. 

I am feeling a little foggy, but no dizziness so far. Hopefully, this dose will not trigger symptoms. I plan to consume the same dose for several months. If no symptoms, I will increase the dose. 

Studies on low dose oral immunotherapy for food allergies (which is hypersensitivity type I) show that if one consumes a low dose for 2-3 years, the body will tolerate much higher amounts. So, the duration of consumption of the food is important. 

There are studies on very small number of people suffering from celiac where they spontaneously, after long time consumption, gained tolerance to gluten. Very small number, but it shows that it is possible. 

Since the reaction to gluten is basically a mistake and gluten is not in itself toxic, theoretically it should be possible to train the immune system to correct the mistake. Doctors manage to make people tolerate toxic chemo with desensitization therapy, there should be a way for gluten.  

 

 


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captaincrab55 Collaborator

Rita06,  I hope you're on to something, but meanwhile I suggest you get properly diagnosed!  

newtonfree Explorer
1 hour ago, captaincrab55 said:

Rita06,  I hope you're on to something, but meanwhile I suggest you get properly diagnosed!  

Agreed. Celiac and non-celiac gluten sensitivity are conditions that cannot be diagnosed and battled alone. The number of consequences to overall health, from vitamin and mineral deficiencies to elevated risk of lymphoma, mean that this needs the involvement of allopathic medicine.

Take it from a doctor with newly-diagnosed celiac disease!

Also...

6 hours ago, Rita06 said:

Studies on low dose oral immunotherapy for food allergies (which is hypersensitivity type I) show that if one consumes a low dose for 2-3 years, the body will tolerate much higher amounts. So, the duration of consumption of the food is important. 

There are studies on very small number of people suffering from celiac where they spontaneously, after long time consumption, gained tolerance to gluten. Very small number, but it shows that it is possible. 

Since the reaction to gluten is basically a mistake and gluten is not in itself toxic, theoretically it should be possible to train the immune system to correct the mistake. Doctors manage to make people tolerate toxic chemo with desensitization therapy, there should be a way for gluten.  

You cannot and should not be making these sorts of assumptions. Celiac disease is not an allergy, it is an autoimmune disorder, and "challenging" it with gluten causes persistence of inflammatory changes in the gut ratherthan desensitization. We can see this with how much longer it takes American patients to show resolution of villous changes on duodenal biopsy compared to Australians and Europeans on GFDs (American labeling and restaurant laws make it much easier for celiacs to get glutened). Gluten allergy is not autoimmune, but does involve the immune system, albeit in a completely different way.

Trying to self-design some sort of allergy desensitization protocol in the absence of a diagnosed allergy is misguided at best, and potentially dangerous at worst. There is a wide array of bloodwork and skin prick-based testing that can help a GP, gastroenterologist and/or allergist to differentiate between these vastly different conditions, at which point the therapeutic options become much clearer.

Nick Cheruka Contributor
19 hours ago, captaincrab55 said:

Rita06,  I hope you're on to something, but meanwhile I suggest you get properly diagnosed!  

I couldn’t agree more!👍Please try to get the proper diagnosis, per GI doctor or GI group of doctors! You owe it to yourself to know exactly what your dealing with to deal with it correctly without guess work! Good Luck Celiac of over 20yrs Bloodwork and genetic testing pointed to Celiacs, the endoscopy with biopsy was the concrete answer to Celiacs!

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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