December 24, 2012 at 11:44 pm #8429
I am very thankful for this website and the work of Dr. Osborne and his team.
It’s Christmas Eve and I am still learning all I can about “gluten” and its cause and effect. I really hope to learn all I can to assist in my son’s healthcare. My 13-year-old son has Crohn’s disease, allergies, sensitivities, and asymptomatic asthma at the present time. I have Hashimoto’s thyroiditis. There is a family history of autoimmune illness, allergies and sensitivities on both sides.
I had suspected, on and off, that wheat, bread, and pasta might be culprits, but I wasn’t quite sure how to definitively test these suspicions as reactions were subtle and delayed. My son had allergy tests, Vega sensitivity tests; and diet elimination was tried for some time but not maintained due to great uncertainty and mixed results. After much contemplation, research, and disappointment, I finally zeroed in on “gluten” and found this most informative website.
My son was diagnosed over two years ago and when my husband and I asked if diet caused his illness, we were told that diet doesn’t cause Crohn’s and it can’t cure it. We’ve always watched his diet because of his asthma etc. – he takes in limited dairy and does not tolerate a glass of milk at all.
Anyway, at a later visit, we consulted with the dietician about putting our son on the Elaine Gothschild diet and received a look of unsettling disapproval. The dietician told us to feed him healthy foods, but “don’t restrict his diet, let him eat what he wants.” “If he wants to have pop and pizza with his friends, let him,” as she has seen “real disasters” with strict diets. As a family, we felt defeated and scolded. None of us are overweight; we do most of our cooking at home and promote healthy foods, reduced sugar to no sugar, reduced dairy, and are now working towards gluten free.
We just received our son’s gluten sensitivity gene analysis back and the results were no surprise. He is HLA-DQ2 positive, and HLA-DQ1 & 3 positive. When you have a feeling about something as a mother you are wise to listen to your instinct.
I have not presented these results to his GI specialist yet, but we plan to as a family in the New Year. First, I have asked our GP to run the celiac panel and some more detailed blood work. In the past, his specialist wasn’t so receptive to “my blood work requests.” I want to have everything in place before I bring up gluten sensitivity or the possibility of celiac disease, as I am worried about the GI specialists reaction to this information.
I believe that the medical team helping my son is doing all that they can to keep him healthy and are working within their trained boundaries and treatment protocols-they mean well. But, I am the type that always looks outside the so-called box for the “why” factor. He has always been sensitive to this food or that since early childhood, they know it too, so why not look at that a little more instead of administering another drug or treatment that still hasn’t put him into remission.
Too bad some practitioners in the medical community are limited in their knowledge of how diet truly affects the health of these susceptible individuals and what works for one may not work for all. Keyword: Individuals.
Until there is change, we will continue to advocate for our son’s healthcare and do what we need to do as a family to get him healthy and keep him healthy.
My son loves to cook and bake and he can’t wait to try out some of the new recipes we recently downloaded from this website.
Thanking you again for all the information and for sharing. Sorry this is so long winded.
Wishing you all safe, happy, and healthy gluten free travels.
AnnDecember 29, 2012 at 10:50 pm #10181Lesli LoewenMember
Welcome Ann. I am so glad that you are finally finding answers. I too am here learning for my husband and children. Thank-you for sharing your story with us.January 1, 2013 at 8:03 am #101841desperateladysavedMember
I am so happy to see people caring for loved ones in this way. You are in the position of being able to make quite a difference in their life and your own.
I hope they will be well soon.
DianaJanuary 1, 2013 at 3:40 pm #10186
Hi I am new to this whole internet forum. I am totally lost on how to do this. If anyone out there can give me some pointers on how to use this I would appreciate it since I really need people who understand what I am going through. Thanks in advance for any and all help I will receive.January 1, 2013 at 4:13 pm #10187
I believed I figured this out. Anyways, I am having a hard time trying to figure out what I can eat. I have multiple food and chemical sensitivities, candida, fibromyalgia (diagnosed over 20 yrs ago) and have a huge issue with gluten. I purchased all the cookbooks from Dr. O and a lot of the recipes I can’t use because of either food sensitivities or it feeds my candida. This is so frustrating!! Is there anyone else out there who is going through what I have been (my whole life) and still am going through? I can’t take any suppliments as I have reactions to nearly everything out there. Any advice would be appreciated. Thank you.January 11, 2013 at 8:03 pm #10213
Welcome Ann. I am so glad that you are finally finding answers. I too am here learning for my husband and children. Thank-you for sharing your story with us.
Just a little note to say “Thank You!” for the warm feedback Take care.January 11, 2013 at 8:13 pm #10214
I am so happy to see people caring for loved ones in this way. You are in the position of being able to make quite a difference in their life and your own.I hope they will be well soon.Diana
Many thanks for your supportive comments Diana-all the best to you.
I am hoping that all my recently aquired knowledge about my son being genetically gluten sensitive/intolerant will put us all on the correct path to helping him heal and remain healthy. I am working on being gluten free as a family. I feel better without gluten in my body.January 11, 2013 at 8:15 pm #10215
I believed I figured this out. Anyways, I am having a hard time trying to figure out what I can eat. I have multiple food and chemical sensitivities, candida, fibromyalgia (diagnosed over 20 yrs ago) and have a huge issue with gluten. I purchased all the cookbooks from Dr. O and a lot of the recipes I can’t use because of either food sensitivities or it feeds my candida. This is so frustrating!! Is there anyone else out there who is going through what I have been (my whole life) and still am going through? I can’t take any suppliments as I have reactions to nearly everything out there. Any advice would be appreciated. Thank you.
I have been looking into a variety of cookbooks and food preparation ideas. I can see myself substituting some of the ingredients for what is more tolerable for my son and myself. It is going to be time consuming I know, but I think very worth while.
It is never easy being sensitive to so many things around you especially what goes into your mouth. I feel for you.
It is going to take patience, perseverance, trial and error to figure all this out, but determination goes a long way.
I’ve been dealing with my own health issues for over 15 years as well as my son’s and it hasn’t been easy.
My son and I had trouble with candida many years ago, before I even heard about gluten. We were both dealing with some health issues and the medical community was offering more medications than I wanted near my son or myself. So, we went to a naturopath who helped us rid our bodies of the candida. I wish I knew about our gluten status way back then. Anyway, the naturopath encouraged a diet with low sugar intake to avoid feeding sugar to the candida. He put us both on probiotics and nutritional supplements. Eating a healthy diet was encouraged. I felt better for a short while and my son’s asthma settled somewhat, but it wasn’t a true fix.
At that time my son was sensitive to quite a variety of foods and supplements, so it was somewhat difficult to know what was affecting him and what to feed him. We rotated and eliminated foods. We eliminated dairy as well and this seemed to help his asthma and his rash. These treatments helped to a certain degree, but they never really cleared the ongoing health issues.
I was also diagnosed with fibromyalgia many years ago. My muscles and joints ache all day, everyday-I’m use to it now.
Today, as I look back at all we’ve both been through with our health-the appointments, disappointments, treatments, supplements, costs-I can’t help but wonder if gluten is and has always been the main culprit for us?? Food for thought!
With everything I’ve researched, studied, read, and wondered about-removing gluten as the first step to a new foundation seems to make sense. I feel that once we do our best to remove the main identified irritant (gluten) and heal our damaged bowels, our bodies will be better able to cope and tolerate other foods that we are now sensitive too. I am hopeful.
We don’t use table sugar, only organic honey and/or agave syrup. We are both able to tolerated limited dairy, but I am now almost sugar and dairy free and I feel better without them. I use rice milk, coconut milk, and almond milk. We can be sensitive to supplements so I try to buy ones that have the least amount of added ingredients especially sugars (fructose, sucralose) or sugar substitutes, also food colorings, that is sometimes hit and miss. It is good to take any new supplements in what I call a low and slow fashion if you are sensitive. If it says two, I start with one and work up to the full dose. All our supplements are gluten free. I’m looking into gluten and allergen free versions now.
A 5-day food rotational diet may be some help to you as well. Not having too much of or too many sensitive foods together might be easier on your system. Corn and large tomatoes can sometimes be bothersome, so I watch them too. I try to only use natural products around our bodies and our home to lessen the irritants.
We’ve got a lot on our plate-no pun intended.
I hope this helps you, take care. AnnJanuary 11, 2013 at 10:20 pm #102161desperateladysavedMember
“With everything I’ve researched, studied, read, and wondered about-removing gluten as the first step to a new foundation seems to make sense. I feel that once we do our best to remove the main identified irritant (gluten) and heal our damaged bowels, our bodies will be better able to cope and tolerate other foods that we are now sensitive too. I am hopeful.”
You sound like you coped with gluten the way I did. I kept doing what I knew diet wise. Some intolerances I figured out. I cut the families sweets way back. We turned to natural, organic foods, and generally don’t eat like Americans. I also studied very hard to overcome my intense fatigue.
My chiropractor thought if I cut out gluten that my body could heal up and tolerate some of my problem foods. As far as she and I are concerned, you can have hope like that!I still am in the heal up stage myself, but it seems to be working!
DianaJanuary 12, 2013 at 11:18 am #10217
Thank you Ann for sharing your story! I too just accepted and lived with the fibromyalgia pain (the medical profession couldn’t help, for too long, until removing gluten. I was told, by the specialist, when diagnosed with fibromyalgia, “Your not going to die from it, but there are going to be times you wish you were dead!”. Boy, what help that gave me!
Thanks for the encouraging words regarding rotational diets, from yourself and also from Diana. I have buckled down, the last few days, to really focus on a rotational diet, to see if this may be my missing link. I also started “thinking about myself and my needs”, which you all know as mothers we don’t do. Hopefully this will be the key to being able to fully heal my gut!
It can be very discouraging and extremely time consuming, but we have to do what we have to do in order to heal.
There are times, when we feel we don’t have the strength to fight on and just accept our lives as they are. But, we must push forward, for ourselves! We only have one life and that one is even too short, if you know what I mean.
Speedy recovery to all!
RobertaJanuary 12, 2013 at 1:07 pm #10218Peter OsborneKeymaster
Welcome to the group Ann!
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