I think my doctor has lost it

chefkaren · Joined: 22 Nov 2005 Posts: 8 Location: Russell, Ky

First of all, I'm glad I found this site. I was diagnosed in may 2005 after severe neuropathy had me hospitalized for 19 days unable to walk. In the process of diagnosing and confirming the source of neuro issues (CIDP) they learned of family's history of CD and biopsy confirmed mine as well. I was glad to finaly have answers to my decades of GI problems labeled as many things but resolved by no treatments, until GF diet. I'm sure many are familiar with that.

Ok, so i went for my second followup with local gastro (was diagnosed and university hosp 2 hours away) today. Once again he didn't even do any type of exam, only read my chart, asked me to repeat my questions as he was distracted and then said due to the severe inflamation and ulcers i had at time of scope that I'd be on prilosec 20 mg forever. So i asked him, since from what I've read about CD, the villa replaces itself quickly (like 3 days?!) so what would the harm be in having occassional cheat, like daughter's birthday cake? I think i was partly asking to test him but now I'm really confused and NOT sure what to do. Exclamation

He answered, get this, it's fine to have some every once in a while, you'll just have to deal with the results and not plan on working for a couple days till it clears back up.

Is he TOTALLY off his rocker or if I wasn't having any real GI issues when in hospital, would it be ok to cheat at times? Anyone else had a doctor tell them that or do i REALLY need to find a new one? i have been doing everything possible to stay 100% GF since dx, even when cant' afford GF from nutrition store, I've begged grocery to carry things, and they have some. I read every label, everry time I go to buy things, called or emailed companies to confirm info and then he acts like it's "no big deal". I KNOW it IS a big deal. HELP!!!!!
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new single parent who was diagnonsed with CIDP and Celiac in May 2005. Trying to juggle everything on my plate and stay afloat while diasability come through (I hope)

Professor · Joined: 19 Oct 2005 Posts: 757

aklap · Joined: 02 Oct 2004 Posts: 12530 Location: WI, USA

Hi ChefKaren,

Welcome to the board! I am glad you found us!

I am sorry to hear of your neuropathy. I have PN (not CIDP), so I can understand what you are going thru.

I am surprised no one connected your gastro problems with your Mother's dx of CD. (well...I guess I'm not THAT surprised actuall...appalled is more the word I'm looking for).

No it is not acceptable for anyone to cheat on their GF diet. The GFD is a zero tolerance diet. It's not like a diabetic's diet that can be balanced out. Sure, looking at it from the surface...yeah, you could wait out the symptoms of a glutening. But once you dig a bit below the surface, you'll find that you open your self up for the risk of cancer and a whole host of auto-immune cascading diseases. (I know you know this...In my head I'm addressing your Doc). Speaking of your doc...if you look in the Diagnostic Forum here, I have several studies and documents you might like to print out and give to him on the next visit....if there is a next visit Wink

Yup - Lexi's right...it need not be expensive if you stick to the basics. It also helps a lot to be able to bake GF goodies at home. It's the specialty foods that are expensive - the cakes, cookies, donuts, breads. It's a lot cheaper to make them at home. Sure, the flours are still more expensive than wheat flour...but it's still cheaper. I thank God that Peg (my wife) loves to bake and is very good at it. As a matter of fact, she just pulled a couple of GF pumpkin pies out of the oven Very Happy

Thanks for stopping by...hope you hang out with us for awhile. There's lots of info, help & caring here!

Good luck in your GF Journey!
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

cruelshoes · Joined: 23 Sep 2005 Posts: 4059 Location: Washington State

One thing I have learned about doctors in the last year is that if they do not take a special effort, they will know very little about Celiac. Last week I had a doctor tell me that I was still having acid reflux because I needed to cut my meat up into smaller pieces because Celiacs have trouble digesting meat. Huh?

While it may sound a bit melodramatic, small amounts of cyanide would probably not hurt too much either, but you wouldn't want to eat it. Gluten is like poison to our celiac bodies. Al is right, a zero tolerance policy is the only way to go. Maybe it's just because I am pregnant, but I am being hyper-careful not to get any gluten at all. They symptoms are just not worth it.
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-Colleen

Diagnosed 8/05 via bloodwork and biopsy
11-YO son diagnosed 11/05 via bloodwork and biopsy

Guest

Lexi,

I am, or am still trying to be, a pampered Chef Kitchen Consultant. So i don't work in a resturant, just home kitchens. Due to my CIDP and neuropathy I havent' been able to do one in a long time. I have difficulty just cooking a quick GF Wink

meal for me and my daughter at home. My hands get so numb and weak that I've even had to get assistance opening a jug of milk. To say the lest, i really miss it (and the money!!!) but I just can't risk the falls and wouldn't look very convincing that the tools are easy to use. Laughing

Al,

My Mom wasn't dx until after i was. they told me to have family checked and she came back CD. She has not had a scope to confirm but as long as she eats GF her stomach is fine. She used a chilli mix from pantry after she thgouht she had removed all non GF items. Well, I pointed out to her at the store when she went to get more of same type, that it had wheat starch and she realized that was why her tummy was messed up 12 hours after eating chilli. her brother actually was the family connection that had it. He was near death when it was finally dx and he is still in very bad health over 2 years after going GF. He was too out of it to realize that it was hereditary and that others needed checked. Right now another of their brothers is waiting on results of tests. I have 2 sisters one is not and other waiting on results.

My daughter's first blood work showed positive but when referred to pediatric gastro she said that toddlers under 3 y/o can have that level be low and not CD so she is ordering a genetic test and said that once that comes back (not gotten it yet as told to wait until she needed stuck for something else first) it will tell us if she could become CD or not. She said that both parents have to have the genetic predisposition or you can't get it. So we're still waiting on that. in the mean time mentioned that it made sense to me to feedher GF and that way maybe she won't get the damage and complications that can arise. But i was told the nutrients were more important to her atthis age than worry over something that may or may not happen. So I fix 2 meals for a 2 person household, like many of you I'm sure.

Ok, I've rambled enough. I"m glad to know I'm not crazy about my doc... he IS.. I wanted to get in with a different one that was referred to me my dx doc at university hosp but he wouldn't take me as patient because I had already been scoped this year. i think my whole medical community is taking something VERY wrong with their Wheaties in the morning. Exclamation

chefkaren · Joined: 22 Nov 2005 Posts: 8 Location: Russell, Ky

Guess you figured out by now, it was me... ok, so my brain wasn't working and I didnt' log in.. oh well, you get the info anyways
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new single parent who was diagnonsed with CIDP and Celiac in May 2005. Trying to juggle everything on my plate and stay afloat while diasability come through (I hope)

Professor · Joined: 19 Oct 2005 Posts: 757

chefkaren · Joined: 22 Nov 2005 Posts: 8 Location: Russell, Ky

uuuuuughhhhhhhhhh, turning ar keys!!!! i know exactly what you're saying. that was when I finally decided i wasn't waiting any longer for neuro to get to the bottom of things. That, and I had to call my mom to travel about 20 minutes from home to buckle my daughter into her carseat. We had been doing running and I was craving a specialty salad at regional resturant, Bob Evans (they are awesome). So when I got her, then 18 months old, out of car seat, she had overflowed her diaper. I tried to change her in the van but she was fussy and got away from me. I didn't have the overall bodily strength to win the fight of "I"m NOT getting into my seat" to buckle her in. That was one of my lowest days, and I wasnt' even dx yet.

The key thing is when I know I'm past due for my IVIG treatment (monthly) for the CIDP and PN that it causes. I wish my CD was contributing to more of it, then I'd know I could do something myself to fix it. No such luck. Crying or Very sad

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new single parent who was diagnonsed with CIDP and Celiac in May 2005. Trying to juggle everything on my plate and stay afloat while diasability come through (I hope)

aklap · Joined: 02 Oct 2004 Posts: 12530 Location: WI, USA

Hi Karen,

You might checkout the Braintalk PN board. You might find some use info there.

Also don't miss their Useful Websites

When I was going thru my dx'ing of PN (ideopathic), CIDP was one of the possible dx's. My heart goes out to you!!
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

maria 1223 · Guest

My Dr. told me that I had PN. I couldn't move but to go to the bathroom for 3 days he put me on flexaril & moraphine which I hate taking. It starts in my hips than the small of my back & down my legs to my toes it is not muscle pain It is the bones that hurt so bad Crying or Very sad

I do cry. at first my husband thought that I was playing it was no joke. It feels like you'll never be able to get up again. I got a phone call from my GI Dr.saying it is time to get another colon osc. done. does anyone know how many times you have to get a colon osc. done?