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Michmap
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Michmap Rookie
Michmap
Posted

Hi, 

I've been gluten free for 15 months after diagnosis from very high blood levels (iGA I think). There was no question from doctors or consultants that I am celiac, so I didn't have the camera investigation. Now my new consultant seems concerned that I am not 100% better. I still get discomfort below my ribs sometimes; I have oesophigal burning; my stomach can be uncomfortable and I get bloating. All of the above is manageable (apart from when I accidentally get glutened) and part of what I expected as a celiac. It's not getting in the way of my everyday life that I still have these low-level issues. My new consultant has different ideas to consultant 1 and wants me to have the camera investigation which would mean eatting gluten for 6 weeks. I get very strong reactions to ingesting gluten so I really don't want to do that. My questions are: 

1) How realistic is it that I would have no digestive issues at all after 15 months of being gluten free (with occasional accidents)? 

2) How realistic is it that I would ever fully feel 100% healthy when off gluten even years after? 

3) I read on a blog here that I shouldn't touch gluten. Is that right? Is that because I might then touch my mouth or because it is ingested through skin? How far do I need to go with kissing my kids/ husband? Where do I draw the line? 

 

Thanks in advance

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RMJ Mentor
RMJ
Posted

It can take some time to heal on the gluten free diet, especially if you’ve had occasional accidents.

That said, I don’t see why your new consultant would want you to do a gluten challenge before the camera (endoscopy). Some doctors just don’t seem to believe other doctors celiac diagnoses and want to do tests themselves.  It sounds like you know gluten bothers you, since you’ve said you’ve been accidentally glutened.  So you know you need to be on a gluten free diet for life. Your current symptoms could be from celiac disease still, or something else.  If you do a gluten challenge and have an endoscopy there will likely be celiac damage but what would it tell you about your current symptoms?

RMJ Mentor
RMJ
Posted

I didn’t answer your questions!

1. Not realistic, especially since you’ve had gluten accidentally.

2. Fairly realistic, as long as any nutritional deficiencies have been addressed.

3. Touching gluten should not be a problem for most with celiac disease, unless you then put your fingers into your mouth before washing them. Kissing someone on the mouth who has eaten gluten can be a problem until that person has brushed their teeth. 

Hope this helps.

Michmap Rookie
Michmap
Posted
  • Author

Thank you. That is really helpful and your thoughts about the endoscopy were my thinking too. I don't understand how it will help since I know I'm celiac. Your answers to the other questions are also really helpful. I think my ongoing issues might be a reult of the amount of time I've been off gluten, other intolerances (I am definitely intolerant to cow's milk, yeast, egg yolk and citrus...) and potentially other things. Thanks again. 

Mari Contributor
Mari
Posted

Hi Mitchmap,

I've been gluten-free for 18 years. The Dr. did not tell me about the gluten challenge before taking the Celiac Panel blood test. The IgA was elevated but the TTG was in the normal range. I was eating very little gluten foods at that time.

When I see a new provider they want to do the endoscopy (camera) but I tell them that if I'm glutened I get painful lower abdominal cramps and diarrhea. Also have the DQ8 gene which predisposes me to Celiacs.

Michmap Rookie
Michmap
Posted
  • Author

Thank you. My TtG was very high too even though I'd started a gluten-free diet. I'm hoping it will have improved. I think I will tell him I don't want the endoscopy. 

 

 

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