High TTG, Negative Biopsy, Family History - Is the gluten challenge worth the confirmed diagnosis?

[QuietRowing]

I'm 8 days into a gluten challenge and my constant inner debate (about whether to keep going or not) is distracting and stressful. I'd like a few opinions from others who have been in a similar situation, or perhaps know more than what my Googling has come up with.

Some facts:

- I have a family history of Celiac... my father (with confirmed biopsy), and then ~16 other second and third degree relatives on that side.
- I had a positive TTG blood test (149) a little under 2 years ago, and went on the Gluten-free diet (I know that's far from ideal before getting a biopsy, but the pros outweighed the cons - there's a long wait time here in Canada - I was told up to 3 years). A few days on the diet and I felt more energetic, and felt like there were some symptoms that I didn't even notice before that went away. (though placebo is powerful as well... I expected to feel better)
- After 6 months on the gluten-free diet, I had another TTG blood test and it was negative. Good. The diet felt good.
- Long story shorter, I finally had an endscopy/biopsy almost 1.5 years later that came back normal/negative.... however, circumstances (short notice) meant that I only had an 11 day gluten challenge before the biopsy. 

Currently: The GI doctor (who I only saw for 5 minutes on the day of the endoscopy) recommends 6 months back on gluten and then re-do the blood work. If it's positive, then he'll see me again. My family doctor agrees but suggests I could do only 4 months and she'll test then. It would rule out a false-positive on the original blood work. (She is also supportive if I decide to not do it at all and stay gluten-free).

8 days back on gluten and I've been feeling bad... not myself. I can't say whether it's just the 'feeling bad' of re-introducing something into my diet after not having it there for almost 2 years... but I feel some bloating, extra gas, brain-fog, tired, upset stomach daily. I think I could persevere through this, but the inner debate is stressful and upsetting.

So... hit me with it... would you bother doing the challenge? Or just stop here and declare myself Celiac without the paperwork.

Thanks in advance!

 

[cyclinglady]

You are between a rock and a hard place!  

Why would they even allow an endoscopy to check for celiac disease with only an 11 day challenge when a full 14 to 28 days are recommended by all celiac centers?  Why did they not follow the GI Association of Canada’s guidelines?  

I do not know whether to congratulate you on doing a good job adhering to the gluten-free diet or not!  

Only you can decide if it is worth getting a formal diagnosis from a GI.    Since you have a strong family history, you can simply go gluten free.  At least you will get family support.  

While I have a formal diagnosis, my hubby does not.  He has been gluten free 12 years longer than me.  He admits that I get better support from medical or friends, but it works out.  We know gluten makes him sick (me too!)

Keep us posted and welcome to the forum.  

 

[QuietRowing]

Thank you for your thoughtful response! A rock and a hard place describes it nicely :) I'm not sure if the GI knew about my challenge timeline ahead of time or not (I tried to communicate this through his assistant, I just don't know if he was told). Though at the beginning of the endoscopy he said that given my high TTG result, any amount of gluten would probably show a result. Perhaps the fact that it didn't means I'm one of those rare false positives, but I'm doubtful.

I do feel slightly less awful than last week, so at the moment I'm thinking I might see this through the 4 months and see what the new blood work shows.

Thanks again.