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gottaBGfree

Just Diagnosed Last Week, Need Help With All Of This!

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I was just diagnosed with celiac disease last week during my very first (an 8 day) stay in the hospital. I had never even heard of celiac until after my endoscopy confirmed that I have it and Barrett's esophagus. I am so malnourished, even after a transfusion, many IV's potassium, calcium and all the other things that were supposed to pep me up in the hospital. I still feel tired and run down! Now I'm on more vitamins and medications than my Grandmother is! I am concerned that I am taking so many things that cause can constipation that I may not be able to tell if I have eaten something unsafe. I am also having the wierdest feeling in my head. I'm often dizzy, having headaches and just can't concentrate/seem to get my brain to work at times.

How concerned do I need to be with cross contamination? Do I really need to get rid of the pots and pans that are in my kitchen?? Please anyone give me some words of wisdom on how to begin to tackle all of this!


Teri

gottaBGfree

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How are you feeling now? You must have been really sick as now a days they don't put you in hospital and keep you there unless you're near death.

As to pots and pans, mostly any pot or pan that has a smooth surface that steel wool can clean, can be cleaned thoroughly enough to use for gluten-free cooking. The problemic surfaces are: cast iron, especially when "seasoned", silverstone finish, non stick finish, etc. as gluten can hide as residue.

Toasters have to be replaced (or have a new toaster for gluten-free and toaster for all others in household

I have a feeling that those new rubbery bakeware might be problemic too.

Wooden spoons , spatulas, colanders and all cutting boards are now suspicious as places where gluten can lurk. It would be best to replace these items and label the new ones as gluten free only. This is necessary if you share your living space with a "gluten" person; if you live alone you can just throw the "bad" stuff away and not worry about cross contamination from a "gluten" person.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I know this is all so overwhelming but it gets much better, really. Especially since you will start to heal and get better.

As to cc, I didn't think much about it until after I made me something to eat on a counter that I didn't clean and ended up with a bread crumb, yes a crumb, and was sick for days. OK, reality check, need to clean.

I also didn't replace my non-stick pans until after one almost ruined camping vacation where I spent every night after dinner in the port-a-potty in the middle of the night and living on imodium during the day after breakfast. I did get my own cast iron skilliet right away though.

However, I am not offically dx with celiac disease, I didn't go in for testing until way after and refused to go back on gluten for the test.

I now use separate pots and pans, separate sponges for cleaning the non-dishwasher safe stuff, etc.

I get a fuzzy head feeling when I eat yeast and I know some people get that with gluten. There are so many different symptoms that just about anything you can think of could be a symptom of celiac disease or glutening.

I threw out all the flour products in the house, anything that might be suspect, old spices, etc. and it felt great. I kept stuff for the kids and dh like pizza, mac & cheese, etc. but anything that could produce stuff that I could potentially inhale and get sick from, gone!


-Kate

gluten-free since July 2004

Other Intolerances:

Strawberries and Banannas (2007)

Nitrates (April 2006)

Yeast (which includes all vinegar so no condiments) (Oct. 2004)

Peanuts (Nov. 2004)

Soy (Oct. 2004)

Almonds (Sept. 2004)

Corn (Sept. 2004)

Lactose/Casein (1999)

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You want to be very gentle with your system right now. It is going to take a while for you to heal but hopefully you will start feeling a diffeence soon. If you have not dropped dairy from your diet please do so for at least a couple of months. As sick as you were you most likely are not able to digest it either.

For now stick with pure naturally gluten free foods, don't go out and get a bunch of gluten free specialty items until you have healed a bit. Go with natually gluten free foods for now. Meats, chicken, fish, fruits and veggies, nuts, beans etc. Whatever your system will tolerate. As sick as you have been I would start out by throughly cooking your veggies and even your fruits. This will help to make them easier to digest at first. Stay away from things like lettuce and raw veggies until you heal a bit more.

If you are still not holding much in a short course of a modified brat diet,

Bananas,

Rice (plain, cooked in gluten-free broth is okay but stay away from sauces),

Applesauce, (either homemade or nothing added). A half a teasoon of cinnamon added to the applesauce will help your digestion and blood sugar and tastes good.

As your tummy calms down add in chicken and then the aforementioned naturally gluten-free foods.

Make absolutely sure all your meds and vitamins are gluten free, check them even if your doctor gave them to you. And if you are not taking a gluten-free sublingual B12 you may want to add one in, unless your doctor is giving you B12 injections.

I hope you start to get some relief soon, ask any questions you need to.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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