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2 Years Later And Still Dealing With Major Symptoms...

luvrdeo

By luvrdeo
in Coping with Celiac Disease

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1desperateladysaved Proficient
1desperateladysaved
Posted

Two years in and I feel like I am still in transition.  I had to make many changes.  I cut out many foods that I didn't tolerate.  I am currently doing the Specific Carbohydrate Diet.  That is grain free.  I picked up some new foods.  I am contacting food producers before I buy.  Don't give up.  It can be very complicated, but there is hope.

 

Dee

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luvrdeo Apprentice
luvrdeo
  • Author
Posted

Blood tests came back showing that I do, in fact, adhere to a very strict gluten-free diet (which I knew)...doctor did some biopsies from the endo/colonoscopy, but said it's obvious that being gluten-free is not healing anything internally. 

 

In response to some of the above posts, I have tried Align, but got no relief :/  I've definitely considered going to a naturopathic doctor, and depending on what my biopsies show, that might be the route I take.  All my vitamin levels have always come back ok, which surprises me considering food literally goes through me like water.  Definitely not lactose intolerant, gave that up for 6 months and slowly reintroduced with no reaction.  Could it be a fructan issue?  Maybe.  Before being diagnosed with celiac I had looked heavily into the FODMAP diet, might be something I go back to.  Hopefully I'll have more results in a few days, and can start to move forward!

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HavaneseMom Explorer
HavaneseMom
Posted

Hi luvrdeo,

I'm glad to hear your blood test came back fine, but sorry to hear your endoscopy didn't turn out as well.

I just wanted to mention that I tried the low FODMAP diet for a couple of weeks after my GI Dr. suggested it and it really helped my system to calm down. I think my symptoms are different from yours, but I was struggling to feel better and it made a difference for me. I would guess that you would know if it helps you within a couple of weeks on the diet. I really hope you feel better soon.

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luvrdeo Apprentice
luvrdeo
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Posted

Hi luvrdeo,

I'm glad to hear your blood test came back fine, but sorry to hear your endoscopy didn't turn out as well.

I just wanted to mention that I tried the low FODMAP diet for a couple of weeks after my GI Dr. suggested it and it really helped my system to calm down. I think my symptoms are different from yours, but I was struggling to feel better and it made a difference for me. I would guess that you would know if it helps you within a couple of weeks on the diet. I really hope you feel better soon.

Going to the store today with a list of foods that are FODMAP safe - minor changes (have to swap some fruits and veggies) since I am paleo anyway - but it's worth a shot.  I'm beyond anxious to get my biopsies back, simply because I don't like what I read about the damage that is still happening inside.  It's flat out scary!  I'm pretty sure I'll end up back on steroids and immunosuppressants, that's always fun!

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luvrdeo Apprentice
luvrdeo
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Posted

Looks like it's just the colitis giving me hell...non-stop - and no matter what I eat it makes me sick.  They want me on steroids again, and I said no - didn't work the first time, and that was an awful experience.  So then they suggested Uceris, which I just got done with 60 days of...it helped some when I was on it, but the day I stopped everything fell apart again.  This has to be the most frustrating thing ever!  Sorry, needed to vent...

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HavaneseMom Explorer
HavaneseMom
Posted

Looks like it's just the colitis giving me hell...non-stop - and no matter what I eat it makes me sick.  They want me on steroids again, and I said no - didn't work the first time, and that was an awful experience.  So then they suggested Uceris, which I just got done with 60 days of...it helped some when I was on it, but the day I stopped everything fell apart again.  This has to be the most frustrating thing ever!  Sorry, needed to vent...

Sorry to hear this. I sure do hope your colitis calms down soon. I mostly have "C" and I feel so bad for people with "D". Yours sounds like a really bad case of it that has lasted a very long time. Hope you feel better soon.

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