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My Family Can't Eat Gluten Free


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10 replies to this topic

#1 1desperateladysaved

 
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Posted 04 August 2012 - 04:39 AM



My family "can't" eat gluten. In reading monkeyface's gripe about diarreah with eating non-gluten bread; I began to consider this.

I have the diagnosis and they do not. When I have troubles due to my diet I grim and bear it, because I know that I have no choice. I know it will be better in the long run for me. I also expected that I would have it rougher before I had it better.

Then there is my family. The ones genetically related are not convinced that I gave them one of my 4 genes for celiac. The MD told me that they would have atleast one gene and would need to follow the diet too. They claim to be symptom free. Never mind all but one of them are pretty short and a couple are very thin. I could point out several more suspicious symptoms, but no one but me chooses to believe they might have a cause in Celiac.

My family (for the most part) lives with us, their mother and Dad. I (MOM) found out gluten seems to be a major (or the major root) of 30 years of mostly extreme fatigue. I begin to avoid gluten. I also come to notice I am reacting to the gluten which they are cooking, baking, and mixing. I don't seem to be able to be in the same house with gluten being cooked. Now they take things outside to cook and if and when it comes in for the table, I eat in the living room.

Most of the week I do the cooking. Sometimes they cook a meal I can eat. The point being they eat gluten free most of the time. I was just thinking of whether they are reacting to gluten after 3 or 4 days off. They could be experiencing long drawn out withdrawl and return symptoms. When I went gluten free 3 or 4 days later I started realizing my body reacting to it. Now, if they are having these symptoms, along with not seeing a reason for the diet, no wonder we are having trouble. Can you imagine not having conviction to do this diet and yet keeping on through depression, irratability, and fatigue? How long can they struggle? Oh, I hope their eyes will be opened while I am still reasonably sane.

After 30 years of trying to live as if nothing was wrong with me, I do not want anyone of my family to suffer with gluten intolerance and its damage when they don't have to. :(

Does anyone have some family stories of how these struggles worked out for them? I know it will work out, but I don't know when and how.

DT
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#2 RonSchon

 
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Posted 04 August 2012 - 05:44 AM

I know from my personal experience with me... and only me...

In 1998 I was working out of town two weeks at a time.

Atkins was all the rage at that time, I was celiac disease undiagnosed, so when I was out of town I was on a diet that very close to gluten free. I felt great and weight loss was huge and energy was way up.

Then two weeks would go by, I'd fly home, we'd have normal meals - I'd be worn out and bloated at the end of the weekend, fly back to work and a few days in I would be perfect.

Celiac was not even in the vocabulary in 1998. Even with all the talk about Atkins - never did I hear of celiac disease.

SO, flash forward several months, the out of town job is completed, and I'm back home - biscuits and gravy, cinnamon rolls, sandwiches and pizza. I loved all of that. If I knew they were my cause of bloating and pain I don't know if I would have given them up as I have today, but the bloating and pain led to many other pains and problems.

If I had just had the willpower to examine more specifically why Atkins worked for me perhaps I would have gotten diagnosed many years ago.

It's hard to give up food that is being advertised on radio, television, and billboards every where we turn.

At least this - at some point their pain/discomfort is going to be undeniable to them and they have the way to solve their problem instantly.
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#3 Skylark

 
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Posted 04 August 2012 - 08:30 AM

It took my mom a few years to watch me get well and then take the plunge herself. She denied feeling better on the diet for a good six months but got sick every single time she ate wheat and finally accepted that she needed to be gluten-free.

By the way, if you are talking about minor children, I think you need to put your foot down and get them tested for celiac, by blood and genetics. They're at high risk if your 4 genes are double-DQ2.5.
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#4 1desperateladysaved

 
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Posted 04 August 2012 - 07:00 PM

It took my mom a few years to watch me get well and then take the plunge herself. She denied feeling better on the diet for a good six months but got sick every single time she ate wheat and finally accepted that she needed to be gluten-free.

By the way, if you are talking about minor children, I think you need to put your foot down and get them tested for celiac, by blood and genetics. They're at high risk if your 4 genes are double-DQ2.5.


My MD already has told me all of my children should be gluten free. However, my husband and they are not ready. I am doing all I can. My body also seems to be doing all the reacting it can. Life is being very hard.
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#5 sa1937

 
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Posted 05 August 2012 - 05:15 AM

My MD already has told me all of my children should be gluten free. However, my husband and they are not ready. I am doing all I can. My body also seems to be doing all the reacting it can. Life is being very hard.

I'm sure it is very hard not to have all your family on board. My daughter is also celiac and my son-in-law and granddaughter eat gluten-free when she cooks...she's not about to cook separate dinners, for example. I believe she does buy regular bread for them and outside the house, they can eat anything they please.

She did have my 14-year old granddaughter tested for celiac and so far the test was negative. If at all possible, please have your family tested while they are still consuming gluten. I don't know the ages of your children but if they cook something you can't eat, that's no way to live. I would think they'd like to have you back as a healthy MOM!

So many meals are naturally gluten-free and many of the things I eat now are the same as I've eaten all my life. And sometimes only a simple substitution is required...think meat loaf, for example. I doubt they'd know if you substituted gluten-free bread crumbs for regular bread.

Edit: Do you do all the grocery shopping for the family? If so, I would think they'd have to cook using the foods you buy. There are a lot of mainstream products that are naturally gluten-free.

Edited by sa1937, 05 August 2012 - 05:20 AM.

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Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#6 FruitEnthusiast

 
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Posted 05 August 2012 - 07:01 AM

Maybe focus on yourself until you feel better, then you'll have more energy to help the rest of your family? I think they will also be encouraged when they see you feeling better. When you have more energy, your kids will still be eating gluten, and can be tested more accurately. You'll heal faster without the added stress of trying to deal with so much at once. It's a process that takes time and it's hard to be patient, but you can help your family more when you are feeling stronger. Take care of YOU first, you deserve it, and the rest will follow naturally.
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Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


#7 Skylark

 
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Posted 05 August 2012 - 08:19 PM

My MD already has told me all of my children should be gluten free. However, my husband and they are not ready. I am doing all I can. My body also seems to be doing all the reacting it can. Life is being very hard.

Sorry to hear that. It must be frustrating, especially the reacting. Maybe this will be easier to take on when you are feeling better.

Has your doctor spoken to your husband? Maybe he'll believe better if he hears it first-hand?
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#8 1desperateladysaved

 
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Posted 07 August 2012 - 04:07 AM

My chiropractor wrote a 3 page report about me for my family. It explained that 5 years ago I was dying, or something terrible. Maybe my family needs space to guess to come around. If I get beyond the point where my body is working so hard maybe they will be impressed with the recovery?
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#9 Skylark

 
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Posted 08 August 2012 - 04:49 PM

My chiropractor wrote a 3 page report about me for my family. It explained that 5 years ago I was dying, or something terrible. Maybe my family needs space to guess to come around. If I get beyond the point where my body is working so hard maybe they will be impressed with the recovery?

It has happened to other board members so don't give up hope. Just get well and set the best example you can. :)
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#10 FruitEnthusiast

 
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Posted 08 August 2012 - 08:01 PM

Sometimes I have to stop and remind myself to remember the little triumphs I've had and how far I've come already. Then I see the progress. Sometimes it feels like the changes are happening in slow motion and taking a lot longer than they really are. I try to keep track of the changes I've made on a calendar so I can look back and see them when things feel so hard. It helps.
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Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


#11 ravenwoodglass

 
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Posted 09 August 2012 - 03:11 AM

My chiropractor wrote a 3 page report about me for my family. It explained that 5 years ago I was dying, or something terrible. Maybe my family needs space to guess to come around. If I get beyond the point where my body is working so hard maybe they will be impressed with the recovery?

I will keep my fingers crossed for you and your family. I was close to death when I was diagnosed. My amazing recovery convinced the rest of my family to get tested about 6 months after I was diagnosed. In the end though all we can do is give them the information and hope they will do what is needed. I hope you are feeling much better soon. For now you need to concentrate on you and encourage your family to do what they need to do to keep you safe. Worry about the others when you are feeling better.
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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)




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