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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
Posted
  • Author

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!

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.

luvrdeo Apprentice
luvrdeo
Posted
  • Author

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!

luvrdeo Apprentice
luvrdeo
Posted
  • Author

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...

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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      ttg iga high (646 mg/dl) other results are normal

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      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
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