Update And Venting

[SunnyDyRain]

Hey all, I've been away for a while. Life has been crazy I went on a cruise earlier this month (didn't get glutened once... Yes Carnival Cruises are safe! )

Now I'm back and back to doctors in force. I went to my GP and she ran alot of tests. I am low on folic acid, and what I concider low on B12 (will be calling her about that tomorrow). My Celiac tests came back negitive so I'm adhering to the diet! (Gold star for me!)

However she sent me to a Gastro and a Derm. The Gastro is worried about my continued D even though I am on the diet and testing "clean" for gluten. I have to have a colonosopy on Wednesday She is testing me for some sort of colitis that is common in people with auto immune diseases. Bah! She is not doing a endoscopy and or making me do a gluten challenge... thank god!

The Dermatologst was looking into my hair loss, but now he is worried about Vitamin C deficency due to hair loss and rough skin.

So as my doctor ruled out celiac, seems like the specialists are finding ways to blame it on celiac 14 months after I stopped eating gluten.

I just sort of feel frustrated, I say "celiac disease" and they blame that for all my problems. I'm really feeling as if none of them are really looking outside of the Celiac box.

I really am much more than a "Celiac Pacient"!!

Oh, today the Derm asked what sort of medications I was taking for Celiac Disease... i almost laughed until I realized he was prolly a med student and it's not nice to laugh at med students as they are really just learning.

Ok that's the end of rant.. i welcome comments and ideas!

[ravenwoodglass]

I am glad you had a good safe cruise but it is too bad you are still struggling with issues. The only thing that struck me was the note in your sig that said you are lactose intolerant. Could you be casien intolerant and not lactose? Casien is in a lot of 'nondairy' items and in many dairy replacement cheeses and that sort of thing. Casien intolerance is pretty common with us and that would be the first thing I would look for along with an intolerance to soy, also common with us. You may have already eliminated these as issues but figured I would mention them as both could cause continued GI distress even when gluten-free.

[RiceGuy]

Well, all I can add is that I think you're right about the B12 deficiency, since you mentioned the hair and skin problems. You can't overdose on B12, so I say go ahead.

[pele]

Oh, today the Derm asked what sort of medications I was taking for Celiac Disease... i almost laughed until I realized he was prolly a med student and it's not nice to laugh at med students as they are really just learning.

I was chatting with a Chiropractor/acquaintance recently and mentioned celiac disease. She, too, asked me about the meds. I saw her a few days later and she had obviously looked it up and was embarrassed. I'm happy she is better educated now!

Is your colonoscopy to check for microscopic colitis? I was just reading Dr. Fine's essay on enterolab and he says 4% of celiacs have it, and it is a major reason for continued D.

[sickchick]

I am off of EVERYTHING (including vinegar, soy lecithin, soy, nightshades, carageenan, potatoes)

and I am still struggling with chronic 'D'

I actually ordered Dr Fine's Microscopic Colitis stool test but it's been sitting on my table for like a MONTH! I am so bad I need to DO IT and send it in already... trying to psych myself into doing it HAHAHA

Good luck to you.

Oh and for my gi trouble I eat psyllium every day. Metamucil plus Calcium. I get the pills.

lovelove

[SunnyDyRain]

Hey everyone, I had a colonoscopy yesterday.... my colon looks stunning (got the pictures to prove it!) however... i have inflamation and an ulcer in my ileum!

From what i have read does that mean Crohns Disease?

Anyone have any experince with this?

I have to wait until the end of the month for the follow up, but this wait is killing me! I'm so worried about this!

[Jestgar]

I don't think one ulcer is worrisome.

I wanted to tell you that when I stopped eating soy, my hair stopped falling out, and finally, after cutting back to only vegetables and meat, my bowel movements are somewhat normal. You may need to investigate other foods (sorry )

[gfpaperdoll]

yes, be careful about getting labeled with something like Crohn's. A friend of mine was misdiagnosed with Crohn's for years - she really had celiac disease - DQ8 & DQ2 & positive thru Enterolab. she said her "Crohn's" was gone at day 5 of the gluten-free diet...

Are you eating any gluten-free grains? That could be a problem for you, also dairy & soy. Look into the SCD diet... I would totally be looking at your diet as the cause of your problems? Are you eating a lot of white potatoes? eggs? nuts? just a few of the common problems... I would cut back to no processed foods.

also, are you sure you are totally gluten-free including skin cream, & all personal care products? Do you live in a house that is gluten-free? Are you on any meds or vitamins that you have not checked?

Hope you are better soon.