Saw Gastro #3

[Eclara]

Hello! To recap: I was gluten-free at the suggestion of my then-doctor, but was not careful and not avoiding CC. I did this for about one to two years. I did a gluten trial from mid-October to early December in 2012. Biopsies all came back normal but the trial made me very very sick, triggering gastritis, fibromyalgia, a spike in my thyroid levels, and about a dozen new food intolerances (among other things) for months afterwards. I am about 8 months gluten free now and the fibro FINALLY went away and I don't curl in the fetal position for hours after I eat anymore, so progress! Unfortunately I've been stalled at this point for months now and I'm drastically undereating, which is no good, especially now that I've taken up jogging.

 

I am still unable to eat any kind of grains whatsoever without triggering stomach cramps, diarrhea or really bad gas. Basically every time I eat my stomach bloats and feels uncomfortable, no matter what kind of food it is. I have to eat small amounts of food at a time because my stomach revolts if I eat what would have been a normal sized meal for me before. I'm getting really angry, these were not problems I had before the gluten trial and they are taking over my life now!

 

I went to see gastro number 3 today and when I asked her why all of this was still happening so long after the trial she said, "Your symptoms could only be from celiac, but you can't have celiac because with your symptoms your entire intestine would have had to have been very damaged and smooth like a pipe. If you have gluten intolerance, you shouldn't be having symptoms from the trial at all anymore so it has to be unrelated." I don't know why my intestines would have to be "smooth like a pipe", my symptoms are pretty average or even below average in terms of severity- they're just extensive.  I brought up spotty damage and she again said that with my symptoms it would HAVE to be really obvious, and that NCGI just can't cause problems once you stop eating gluten. She also didn't care to hear me try to explain how sick I was during and after the trial. Anyway, I am now 0 for 3 in the category of 'gastros who listened when I told them the gluten trial triggered long-lasting issues'. At least this one didn't tell me it was IBS or depression.

 

I asked for gallbladder testing, which she granted in the form of an ultrasound later this month. She also prescribed me carafate because she suspects bile reflux (but WITH ABSOLUTELY NO RELATION to the gluten trial). Does anyone have experience with carafate? Is it any good? Has it affected your thyroid medication at all? There was a warning in the pamphlet about decreased effectiveness of thyroid medication. I'm on Armour.

 

I mean, I'm glad to be getting my gallbladder checked out anyway, but I left feeling very disappointed. I had too much riding on this one appointment, I guess. I didn't even get through my whole list of symptoms! I had so many unanswered questions when I left, it was really infuriating. I'm thinking three strikes is enough for gastros. Any recommendations for other types of doctors who help with weird stomach etc. issues? Also, can anyone recommend a good probiotic? I was going to ask at my appointment but it completely slipped my mind.

 

Wow, this got long and ranty and little disjointed. Thanks in advance!

 

 

[mommy2krj]

Hugs to you! Wish I had more to offer than that but I don't know anything about either the carafate or the thyroid meds and the mixing of them.

 

I do know that someone with more knowledge than me will be along with good advice!

Doctors just make me want to smack them upside the head lately....so I feel your pain there.

Good luck and I hope you're feeling better soon!

[nvsmom]

I'm not trusting of doctors anymore either, they are just a tool I use to treat myself... My family doctor is a "tool" too. 

 

Hopefully your symptoms will slowly settle back down soon. Many of us take months or years to regain our health. I think that all you can do for celiac disease is eat well, possibly avoid dairy, take that probiotic (I just by whatever looks best) and possibly try L-glutamine to speed up healing.... and give it time.

 

I hope you start feeling better soon.

[Gemini]

I'm not trusting of doctors anymore either, they are just a tool I use to treat myself... My family doctor is a "tool" too. 

 

OMG......this is what I do.  You are so funny!  Isn't it sad we have to do things this way?  Although, my PCP is better than many and she does think outside the box.  The problem I have with her is that she is more focused on screening tests than the 4 AI diseases I have.  Her reply was that I am doing so well and as I know the diet inside and out, she needn't focus on that. She did run the repeat ANA and RF testing for me when I asked her to, though.  She rarely argues with a requested test so I can't complain too much.  But I view them as a tool to get the things done I want done.