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Newly Diagnosed Celiac- Have Removed Gluten But Still Having The Primary Symptom!


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9 replies to this topic

#1 tscc

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Posted 19 October 2012 - 07:40 PM

Hi and thanks for reading this.

I finally had an endoscopy done last month which confirmed that I do have celiac. She sad my intestine was wrecked from it and had to start gluten-free immediately. So of course I have. But my main symptom, lower abdominal distention and pain (not stomach pain, but intestinal pain) continues.

So, I wondering what the hell is going on!

Is it because I'm having an issue with dairy now too? Or because I'm not really strict in the sense of having a gluten-free kitchen- I mean, I can't have my family go gluten-free too. I use the toaster they do...

or, is it the dairy

or, am I having other things that trigger the same response from my body that gluten does? Like does gluten-free steel cut oats not work for me?

And thoughts will be much appreciated.

Thanks!
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#2 tarnalberry

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Posted 19 October 2012 - 08:31 PM

If you are using shared condiments, a shared toaster, and other sources of contamination, you are not yet gluten free, and cannot really expect to get better until you go completely gluten free.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#3 rosetapper23

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Posted 19 October 2012 - 09:23 PM

Yes, living in a household where others eat gluten, using a shared toaster, and eating oats can all cause your symptoms. Many of us with celiac cannot tolerate oats regardless of whether or not they are certified as being gluten free. Also, many of us cannot tolerate soy and/or dairy. Sometimes as our autoimmune systems are producing a lot of antibodies, they can mis-identify other foods as containing gluten when they don't.

In the beginning, it's very important to make your household as gluten free as possible and to eat only natural, whole foods. Is there a reason why your household cannot go entirely gluten free? It's easy to do....and it can be a very healthful diet for everyone. Cannot the other members of your household simply consume gluten outside the household? If you eat whole foods, we're only talking about things like bread, pasta, crackers, and desserts that might contain gluten. These can all easily be replaced with gluten-free alternatives. Eating a gluten-free diet isn't like eating "bad" food--really, everyone can enjoy eating a gluten-free diet.

It sounds as though you'r trying to go "gluten light," and, quite frankly, this will not alleviate your symptoms. Please read as much as you can about celiac--I believe you'll begin to understand very soon why your present arrangement can only spell disaster for your recovery.
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#4 Juliebove

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Posted 20 October 2012 - 12:46 AM

You have to be really strict. If you can't get your own toaster then you could try those toaster bags. I don't know that they work because I haven't tried them. Or make your toast on a cookie sheet in the oven.

We got my daughter her own little fridge for condiments and such. We had to because there just wasn't enough room in the big fridge which really isn't all that big.

Hard to say on the oats and dairy. Some people can. Some people can't. But bottom line you need to be really strict.
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#5 sa1937

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Posted 20 October 2012 - 05:04 AM

I agree with what others have already said. You could pick up an inexpensive toaster for yourself, which would probably be cheaper than buying toaster bags.

Some of us did have to give up dairy for awhile. I'd definitely suggest you do that and hopefully after you have healed, you may be able to successfully incorporate dairy products into your diet. Others have problems with casein, which is in all dairy products, but for now you might want to just give up dairy products to see if you get to feel better.

Personally I didn't consume any oats right away but you could try reintroducing them later (gluten-free oats, that is). A small percentage of us cannot tolerate oats at all.

If you stick to a whole foods diet right away, you'll have a whole lot less labels to read, too. In the meantime you might want to check out the Newbie 101 topic here.
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Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#6 shadowicewolf

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Posted 20 October 2012 - 01:29 PM

You cannot use their toaster at all. Period. That right there is probably your issue.
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#7 tscc

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Posted 21 October 2012 - 08:15 AM

You cannot use their toaster at all. Period. That right there is probably your issue.


Thanks for all your insights. I guess their is a learning curve when it comes to this. I guess the idea of living so rigidly kinda sucks, and I don't want to do it. I will, because I want to get better- but it sucks. Okay, done feeling sorry for myself.

I am so grateful for this forum. I'm going to read as much as I can and meanwhile, consume meat, veggies, and fruit- only.
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#8 shadowicewolf

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Posted 21 October 2012 - 12:30 PM

oh trust me, we understand fully. :ph34r:
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#9 T.H.

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Posted 21 October 2012 - 04:25 PM

Also, there's a good chance that you won't always be the only gluten free member of the family. Much easier to make the family gluten free after that!

Your doctor should have told you (but most don't) that if YOU are diagnosed, everyone in your family should now get tested, with or without symptoms (because the disease can be doing damage for a while before symptoms develop). And if they test negative, they are supposed to get tested periodically for the rest of their lives, like every 5 years or so, or if they ever develop symptoms.

Your siblings, children, and parents are in a category where 1 in 22 people have this disease. Your aunts/uncles, cousins, and granparents, it's 1 in 56.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#10 1desperateladysaved

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Posted 21 October 2012 - 04:44 PM

A note to that you may go through some withdrawl symptoms while healing. Any reaction your body makes is a good one. It is a sign of healing to come. How long exactly that it takes to heal depends on many factors.

How long you have been suffering damage.
How completly you avoid gluten.
If you can absorb the nutrients you need.
I believe supplements are important to add nutrition.
If you can stay on your diet regardless of social pressure.
If you can discover other intolerances and avoid them, for as long as it takes.
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