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NotMollyRingwald

Member Since 15 Apr 2013
Offline Last Active Feb 25 2014 07:03 PM
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Topics I've Started

Biopsy Results Inconclusive; Early Celiac, Sibo, Something Else?

28 May 2013 - 11:33 AM

Just got the word from my GI – the biopsy results are inconclusive. <_< I don’t have a copy of the report yet, but my doc explained there was a small amount of damage to my villi.  However, it was not full villus atrophy as would be expected from a full blown Celiac.   He believes the damage could be from “early Celiac disease” or it could be the result of a severe gastrointestinal virus (I had a nasty stomach bug last Christmas).   Given my significant positive improvement on a gluten-free diet, he leans towards the early Celiac theory, but doesn’t want to official diagnose that at this point as my blood work (tTg IgA) was negative (8 with 1-10 being normal).   He doesn’t want to exclude Celiac at this point either, as I was 6 weeks gluten-free at the time of the blood work and it’s possible my tTg would have been higher before going gluten-free.   ARRRRRRGH.   Anyone have a time machine that I could use to go back to February and see a doctor BEFORE going gluten-free?? :P *Sigh*

 

So, we also discussed options.  1) take the gene test and hope it is negative (so we could positively rule out Celiac),  2) treat as Celiac/NCGI and go along my merry way on the gluten-free diet (complete with a referral to the hospital dietician), 3) go back to eating gluten for EIGHT MORE WEEKS and run a full panel of bloodwork again in August.

 

So here’s the thing.  If I have Celiac, I want my son to be tested.  When it comes down to it, the diagnosis/ruling out of Celiac is only important to me for that reason.  I already know gluten is poison to my system…the gluten challenge proved that beyond a doubt.  I can’t go through another 2 weeks (much less *8* weeks) of gluten hell.  I just can’t do it.  :wacko:   So, I opted for #1 & #2.  Hopefully, the gene test is negative & Celiac is ruled out.  If it’s positive, well, I guess I cross that bridge when/if I come to it.  (Sidenote: if this is what “early” Celiac is like, I cannot imagine the misery so many of you endured when eating gluten!!!)

So, long story even longer, I’m wondering about the possibility of the villi damage being done by a stomach virus/SIBO/lingering stomach virus.  The GI originally planned to take a sample to test for SIBO during the EGD, but wasn't able to (the only tube they had for the procedure is made of latex, I'm allergic).  He mentioned a breath test as an alternative, but doesn't feel like that is a strong option at this point.  Thoughts?  Any insight?

 

Once again, I am so appreciative of you all - the opinion of those who have been- there-done-that- and-should-have-a-medical-degree-from-the-experience is HIGHLY valued by this girl!!

 

 


Tips On Helping Family/friends Understand Cc

22 May 2013 - 05:42 AM

'Morning,

 

Apologies if this is a duplicate post...I've looked around a bit and didn't really find what I was looking for...but that could be operator errror (I'm capt of the space cadet squad today).

 

I was wondering if you gluten free veterans have some words of wisdom or maybe have favorite websites/resources for helping family and friends understand cross contamination.  At this moment, I'm the only one in my family gluten free, and most of my family has never had to worry about something as small as a random bread crumb.  Especially my husband.  I'm going to be an absolute nazi about "safe" cookware, kitchen space, etc...but I can't seem to find the right away to explain how careful Celiacs/NCGSs need to be and am a little worried about him accidentally using my gluten-free butter/jam/etc and not realizing what he's done.

 

Any advice/experience/resource information is appreciated!

 

Thanks!

 

Amy


Gi Apt - Endoscopy Scheduled For Next Week

17 May 2013 - 01:49 PM

Wow can't believe how well that went. I think. Lol

GI was on the up & up w/current Celiac/NCGS research, and immediately started talking about scheduling an endoscopy/biopsy (such a relief to me as I was very nervous about being brushed off). Apparently, my PCP was incorrect about my blood tests, or I misunderstood her interpretation. The only test she took (aside from the total IgA to verify I wasn't deficient) was the tTg IgA, which was negative (my level was 8, when range was <10 being normal), but the GI said that test could have been false neg as I had been gluten-free for 6 weeks when it was taken. He listened to my symptoms and concerns & did a brief physical exam of my mid section. Spent a decent amount of time explaining the basics of Celiac/NCGS (little did he know I had already been schooled by you fine folks ;)) and discussing other possible issues. They ran some additional blood work (thyroid and the celiac gene test) and were able to get me in for the scope next week! Only 5 more days of gluten challenge for this girl. Yahoooooooooooooo!!! *happy dance conga line*

One weird thing, when he was checking my stomach, my lower right quadrant hurt like heck when he pushed on it. I guess my face showed the pain, caz he asked me to confirm my discomfort. My lower left quadrant was tender, also, but the right side HURT. Anyone know or want to take a guess what that could mean?

Just Venting

14 May 2013 - 06:29 PM

Please excuse my pity party but its either post on this website full of prople who get it or run screaming through the neighborhood and get locked in the looney bin.

I've had about all I can take of this gluten challenge. Admittedly I've let of go too far (eating too much gluten), partly because I'm desperate for confidence in a diagnosis (+ of -, idont care, i judg want to be sure my test results are accurate) and partly because I'm mourning the loss of my childhood comfort diet (processed junk food). My head is such a mess. Headache and brain fog so thick I cant thnk straight, exhausted despite more sleep than usual, dark circles under my eyes, horrible smells all around me (body odor and gas, despite stict hygiene measures), it hurts to lie down, it hurts to sit up. Stomach acid boiling, constant acod in the back of my throat. Everyone at work has noticed, they keep asking me if m ok, that I look sick. And I AM sick. The worst part is the Ffect on my fmily. I'm missing out on time with my son, breaks my heart when he asks me if I'm still sick..."you not sick anymore mommy?" He's not even four yet...i don't remember telling him I as sick, but he obviously gets that something is wrong with mommy. :*( My marriage is strained. Hubby is trying to understand, but he just doesn't. My libido is gone, all I want to do is sleep/lay down... He is being as supportive as he can, but its not fair to him... Plus i just realized that i most likely ahve to keep eating gluten for longer thN i was thinking, unless the GI is able to schedule for an endo right away, ive got AT LEAST 2ore weeks of hell i fromt of me. Ugggggggggh. I just want to curl into a ball and hide. My optimism and positivity are gone. I hope they come back.
Sorry for the negativity. Just had to get that all out. Maybe looking back at this post will help me stay gluten free someday....

Recovery Meal Plan/grocery List

13 May 2013 - 12:21 PM

I’m a mess today *shakes angry fist a gluten* and decided planning for the aftermath of this gluten challenge would be a positive coping mechanism (vs. screaming, kicking, and/or cursing). :lol:  
 

I’d really like your suggestions/advice on my recovery food plan.   First couple days I’m going to focus on liquids…I’m thinking smooties, broth soup, maybe some juice, coconut water, and then just water, water, and more water.  After that, fresh whole foods (dairy free), and try to stay away from anything processed, for as long as I can hack it.  Here’s my list so far:

 

steamed/roasted veggies (are there any I should focus on or stay away from?)

avacado
berries
banana
fruit smoothie 
baked sweet potato w/a little coconut butter or olive oil
steamed rice

rice cooked in coconut milk
grilled or baked chicken breasts/tenderloins

grilled or baked cod
grilled or baked ground beef
chicken eggs

 

Are any of the above a bad idea?  Anything you would add to this list? Also, I take my lunch to work everyday, and only have a microwave for warmups, any recommendations? 

 

As I mentioned, I’m feeling rather dumpy today, so I have to admit it’s possible I’m taking this plan to an unnecessary extreme :blink: …I’m open to constructive criticism and appreciate any/all suggestions and personal experiences. B)