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Gluten Free 1 Month, Questions

Newbie Breast Cancer Lupus

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11 replies to this topic

#1 tklp

 
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Posted 28 October 2012 - 06:23 PM

Not sure where to begin...
I'm 57, had BC 3 yrs ago (Double Mastectomy, no Chemo or Radiation) and diagnosed with Lupus last year.
I tried gluten-free a couple of years ago (because so much cancer info I read suggested it) and lasted all of 11 days. During that time I felt HORRIBLE, flu like, but going to the bathroom seemed to be what it ought to be.
I began bioidentical hormone therapy with a top specialist in that field a few months ago and the depression (that accompanied the 20-25 hotflashes per day) is gone. This doctor said that if I had such a strong reaction when I tried gluten-free, it would probably benefit me to do it.
So, I'm here now at about a month. Some feeling sick about the 2nd week, but not as bad as the time before. However, although I never got stomach problems before from wheat, now that I'm "off" it, if I have a little bit somehow (like about 5 of Arby's curly fries must have had it), I BLOW UP (gas, etc.) Is this because my gut was all leaky before and the big molecules were just dropping through, messing me up but not causing discomfort? And now it does cause problems because the lining is smoother and the big particles can't just drop through like they used to?
I'd rather not mess with testing as we have a $5,000.00 deductible, this hormone specialist is costing a lot (out of pocket), and we just can't afford it. Does my situation sound like Celiac or just "leaky gut" that has probably resulted in poor absorbtion leading to the other health problems?
This diet IS a pain to me: I have two special needs girls whom I homeschool and it's hard to fit in all the cooking. My family will NOT eat gluten -free so it adds that much extra to do. I'm wanting regular buns on sandiches when I need to eat out, soft, fluffy rolls that are set on the table at a restaurant...I want to be in denial, I guess that this is what I need for my health.
I hope this is the place to post this. I spent a lot of time looking for a gluten-free support group for adults and was directed here . I could find no other online group for adults on Gluten Free that weren't labeled as for "Celiacs).
I live too far out in the boonies and am too busy to get to "local" groups.
I appreciate any help anyone can give me with my confusion.
Thanks,
tklp
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#2 psawyer

 
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Posted 28 October 2012 - 06:35 PM

Welcome!

Although our name is about celiac, we are here to support anyone who wants help to follow the gluten-free diet. There are many members here who do not have a diagnosis of celiac disease--they just found that their health improved once they eliminated all sources of gluten. You will find empathy and support here.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#3 shadowicewolf

 
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Posted 28 October 2012 - 06:36 PM

Considering all that you've been through, it would not surprise me if you had celiac. As it tends to pop up after something major happens.

As for the fries... cross contamination can be an issue with celiacs so we don't tend to eat out much (i don't at all but thats another story).

You are also going through a gluten withdrawl no doubt. It is pure... errr.... you can insert the word here if you wish. Your body craves it and it drives ya mad.

As for the cooking, some things can be substituted. For example corn starch instead of flour to thicken things, they'll never know the difference.

You could always put something on in a crock pot for yourself and then fix theirs...

I'm very much a fan of soup :) so i make it all the time.
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#4 GFinDC

 
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Posted 29 October 2012 - 08:44 AM

Hi,

People on the forum often report having stronger reactions to gluten after they have been off it for a while. Celiac symptoms are quite variable. Some people have no symptoms at all. So it can be all over the place as far as symptoms go.

Your family can eat gluten-free at home just fine. gluten-free food is good for them if you stick with a whole foods diet mainly. Outside the home they can eat gluten. Your hubby will need to brush his teeth before kissing you tho.

Your reaction to gluten is really more important than a test. If your body has a bad reaction to eating gluten then you know you should avoid it. Just makes sense really.

You should avoid baking with regular flour ebcause the fine particles can linger in the air and settle on surfaces later. Plus if you breathe the flour in it can cause a reaction. There are gluten-free flours and baking mixes available, na dlots of recipes on this site. If you use a bread machine you will need to clean it really well tho or get a new one. colanders shuold be replaced. You also should have separate cooking pots and pans for gluten-free food.

If you are doing a shared kitchen it is good to mark all the condiments as either gluten-free or not. No sharing butter or peanut butter jars etc. Your gluten-free food should be on the top shelf of the cupboard and refrigerator. That way crumbs of gltuen won't fall in your items. You will also need a separate toaster.

Corn tortilas and rice tortillas are a god sub for bread, and cheaper than gluten-free bread.

This video link talks about how foods can help prevent cancer. It mgiht be worth watching.

http://www.ted.com/t...william_li.html

There is also a non-profit org set up to help people learn to eat cancer fighting foods, called Eat to Defeat Cancer.

http://www.eattodefeat.org/

http://www.eattodefeat.org/evidence
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#5 nvsmom

 
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Posted 29 October 2012 - 08:55 AM

(hugs) Welcome to the board.

It sounds like you need to be gluten-free, so I hope the withdrawl ends for you soon. It took me about two weeks to go through it... I'm lucky my family didn't disown me. ;)

I slowly made my family gluten-free (we hs too btw), it took a couple of months. I slowly introduced gluten-free foods they liked before I started taking away the gluten containing foods. I did cut back on their overall flour consumption in the process. It was tricky because my middle son is extremely picky (gags on fruit and veggies) and my oldest has mild aspergers and was very attached to a few of his foods. We're now at the point where they actually prefer my homemade chicken nuggets and they snack on Chex rice cereal.

I mention this because the more you can make them gluten-free, the easier it will for you to prepare foods. Also, celiac disease (if that's what you indeed have) has a genetic aspect to it so it could be affecting, or in the future affect, your children... And to be honest, gluten/wheat flours aren't good for anyone.

Best wishes. I hope you feel well soon and find lots of support around here. :)
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Celiac - June, 2012
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#6 ravenwoodglass

 
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Posted 29 October 2012 - 12:29 PM

Welcome to the board. It isn't unusual for us to have more severe reactions to gluten after we go gluten free. That is your bodies way of telling you that you are doing the right thing by being on the diet. When we are on the diet the antibodies that are attacking us calm down. When you eat gluten they flare and that causes the symptoms.
I know it's hard but it is best if you not eat out right now. Give yourself time to heal. If you must eat out put the name of your local chain restaurants into a search engine along with the words 'gluten free' and that will many times lead you to the gluten free items on the restaurants menu. Be aware there is always a risk of CC when you are eating anything you don't prepare yourself.
There are many things you can prepare at home that are naturally gluten free. Whole foods are the way to go as much as possible but many mainstream items on your local grocery shelves are gluten free and many are even marked as such. Kraft and Unilever products will clearly label gluten ingredients. You just need to look for 'wheat, rye, barley and oats' on the label. If you have a Wegmans close by they label all their gluten-free food with a circle G.
Do read as much as you can here and ask any questions you need.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#7 Jetamio

 
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Posted 29 October 2012 - 03:02 PM

I just have to echo everything that has been said. I never had digestive issues before going gluten free but I had lots of others. Now that I've been gluten free, I found out, the hard way, I have digestive issues when I accidently consume gluten. Ugh! The first few weeks are the hardest. I was starving all the time but eating lots of protein helped a ton. My dd was supportive but had no intention of eating gluten free. However, as I learned to cook differently, she actually prefers it now. It takes time for a family to adjust.
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Dairy free since 2010
Gluten free 2/2012 after off the charts positive blood test
Soy and MSG sensitive
Have opted not to biopsy right now.

#8 tklp

 
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Posted 30 October 2012 - 06:14 PM

Thanks for the kind and helpful comments.
I'd included this in my post and am still trying to understand it:
"Although I never got stomach problems before from wheat, now that I'm "off" it, if I have a little bit somehow (like about 5 of Arby's curly fries must have had it), I BLOW UP (gas, etc.) Is this because my gut was all leaky before and the big molecules were just dropping through, messing me up but not causing discomfort? And now it does cause problems because the lining is smoother and the big particles can't just drop through like they used to?"

So what I'm trying to understand is how Leaky Gut is a separate circumstance from Celiac. The majority of people probably have Leaky Gut, right, and would benefit from gluten-free,( while a much smaller percentage of people have Celiac)?
I understand with Leaky gut, the big molecules go through to the blood stream, not digested enough, and can cause all sorts of problems. But with Celiac, do they a have this situation, but also the gluten does something MORE that causes additional/even more harmful health problems?
Hope I'm making myself clear - trying to understand what is the difference in the harm caused by gluten in Celiac beyond the Leaky Gut harm/consequences.
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#9 shadowicewolf

 
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Posted 30 October 2012 - 06:38 PM

No problem, we're here to help :)

Oh thats hard to answer.

There are a lot of people with IBS for example. A good portion of them could have a leaky gut, or have celiac, or some other sort of condition that messes with the gut. But, you see, the thing is most doctors aren't educated enough in certain areas, so they look for the horses and completely ignore the zebras amongst them.

The harm? Oh dear...... lets see... cancer.... permanent damage (aka NO absorbtion whatsoever left), ulcers, mental conditions, other AI's, the list goes on.
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#10 tklp

 
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Posted 31 October 2012 - 04:06 AM

Is the villi destroyed in both Celiac and Leaky Gut, or only in Celiac? I'm trying to understand the difference in those types of terms.
tklp
PS: I'm getting emails for each reply. It says to configure this in my "control panel". Where exactly is that? I've messed with settings under Profile, Content and Settings, but am still getting the single emails. Where exactly is this control panel and what is the setting I change? Thanks.
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#11 psawyer

 
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Posted 31 October 2012 - 04:34 AM

PS: I'm getting emails for each reply. It says to configure this in my "control panel". Where exactly is that? I've messed with settings under Profile, Content and Settings, but am still getting the single emails. Where exactly is this control panel and what is the setting I change? Thanks.

You are "`following" the topic, probably by your default settings. Check your settings under "Notifications Options."

To turn off notifications for this topic, go to the upper right of the page and click the button that says "Unfollow this topic."

When you start a topic, at the right side of the window is a section with post options. One of them is to "Follow this topic." If you don't want email updates, make sure that box is not checked.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator

#12 shadowicewolf

 
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Posted 31 October 2012 - 04:51 AM

To my knowledge only celiac does that. I could be wrong.
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