Symptoms that Come and Go

[Lsue]

So, my husband has been eating gluten free for 18 YEARS.  His younger sister was officially diagnosed with a scope before that.  And his mother has responded to the diet as well (no diagnosis).  He has not pursued an official diagnosis because a Doctor advised against it at the time, recommending the "response to the diet" as the proof.  Having said all that, his symptoms and responses to gluten have changed over the years.  When he was first followed the diet and would accidentally eat something with gluten, he would what I would call more classic symptoms of celiac disease, like back spasms and diarrhea, feeling sick.  Three different times, though, he has gone completely off the diet, for up to 6 months with NO symptoms at all, making us wonder if he has it at all.  His mom and sister eat a speck of gluten and have a response within hours.  They could NEVER go off the diet for even a few hours.  Why can he go gluten free for SO LONG, with ZERO symptoms? Thoughts?

[ironictruth]

2 hours ago, Lsue said:

So, my husband has been eating gluten free for 18 YEARS.  His younger sister was officially diagnosed with a scope before that.  And his mother has responded to the diet as well (no diagnosis).  He has not pursued an official diagnosis because a Doctor advised against it at the time, recommending the "response to the diet" as the proof.  Having said all that, his symptoms and responses to gluten have changed over the years.  When he was first followed the diet and would accidentally eat something with gluten, he would what I would call more classic symptoms of celiac disease, like back spasms and diarrhea, feeling sick.  Three different times, though, he has gone completely off the diet, for up to 6 months with NO symptoms at all, making us wonder if he has it at all.  His mom and sister eat a speck of gluten and have a response within hours.  They could NEVER go off the diet for even a few hours.  Why can he go gluten free for SO LONG, with ZERO symptoms? Thoughts?

Might be time for a new GI doc. To officially rule it out. 

I am seeing a celiac specialist to rule it out and he informed me that people do not always get symptoms on a gluten challenge. 

[Pocah]

I would be concerned about possible long term damage rather than short term symptoms. Not everyone gets a response within hours of eating gluten. I certainly didn't. Even at the peak of trouble for me it took many weeks for things to change not hours. Certainly it's feasible in my mind that symptoms could take months when in the early stages. 

[Dawn-Ambrose]

I can eat a gluten based diet for a short period of time but it's not too long before things get worse again and i start to show symptoms. My answer to your question is that celiac is an autoimmune disease that causes gradual damage to the digestive tract, not an allergy like response that is instant. Therefore:

It is perfectly feasible that your partner can eat gluten for a period of time (after being on a gluten free diet) before they starts to show symptoms from it.

Why?

When you eat gluten the immune system is activated and, through various processess, attacks and causes damages to the digestive system. At first, when the damage is minor, there will be few symptoms (in my experience, acid reflux and bloating are the first to appear) and so you feel that you are ok eating gluten. After a period of time however, the damage accumulates so the syptoms worsen. Not only now do you have bloating etc but you also have bowel/gut damage causing problems with malabsorption, bloating, flatulance etc as well.

 

Basically if you stay away from gluten your gut will heal (this is NOT an allergy where you get instant symptoms if you eat gluten based foods, in this instance if you eat gluten your gut will be gradually damaged and real symptoms wont show untill that damage is sufficient. If your gut is gradually damaged, this will result in digestive (and other) issues over a long period of time.

The reason your partner, to my mind, can eat gluten for 6 months or more after a gluten free diet is because it takes this long for sufficient damage to occur to the digestive tract after the consumption of gluten. The majority of symptoms wont appear until the digestive damage is sufficient enough.

I grew up with a brother with celiac disease, have a family history of it and have to eat a gluten free diet myself (as an adult and as a baby). Even I can eat it for a limited amount of time before i start getting sick from eating it, but after all is said and done I do best on a permanently gluten free diet all the same.

 

On saying that i also have issues with oats, cows dairy, soya and allicin (onion family foods).

 

The gut is a sensitive system it seems......Although thats ok by me.