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Wendy

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Reply with quote  #1 
Has anyone ever heard of any research being done CVS relating to Gluten free diet.  I have been hearing a lot about the diet relating to migraines and wondered whether it would be worth trying.

If anyone has HAD luck or NOT had luck with a gluten free diet, please let me know.

Thanks.
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Wendy in NJ
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ginny

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Reply with quote  #2 
We actually did the gluten free diet for around a year.  Personally *I* felt great.  One of my kids was "misdiagnosed" as having celiac disease.  She chose to return to a regular diet after her biopsy was negative for celiac but I think the GF approach agreed with everyone in the family. 

Another CVS member has tried the GF diet but as far as I know it has not worked for her.  A friend with three daughters who have autism does stay Gluten Free/ Casein Free / Soy Free (she also uses plant based digestive enzymes and the same supplements as some with CVS take). She feels the diet has made a major improvement for her kids, not only in their autism symptoms but also with their digestive problems.

My daughter with CVS is soy & milk protein (casein) allergic.  She confirmed this with blood work.

As long as your doctor agrees, the diet could be beneficial.  I hope it works, I know you have been having a tough time.  If you try the diet, I found Bette Hagman's first cookbook to be my best resource for cooking and for her guide to hidden sources of gluten. Many stores now have an excellent selection of GF foods but watch out for cross contamination.  To truly test the diet you need to keep cooking utensils and counters GF-- for example, no sharing the toaster with regular bread.

I would be very interested in hearing how this diet is working out if you choose to try it.

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KRSYNENA

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Reply with quote  #3 

We personally have not tried the diet but I do know a child with cvs who has and had no luck with it. We have the milk/whey casein thing in our house..


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KRISTEN CARTAGENA
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Reply with quote  #4 

I did the GF diet for a couple of months. I did really well during that time, but we also had just increased my dose of levocarnitine. The doctor told me to go ahead and stop the diet. I still did okay, but feel that the GF diet did help some. I actually have a family history of celiac disease so maybe that's why it helped. Pretty much I'm still unsure.  It takes a major lifestyle change to go completely Gluten Free; there are many hidden sources of gluten. Good luck! 

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Reply with quote  #5 
Hi,
I have been on a Gluten Free diet since February. I was in the hospital with mild pancreatitis and kept having stomach/body pain and nausea/vomiting. The docs there had no clue what to do with me since all the tests were coming up negative but I was obviously sick. They never thought of cvs. I asked if they had thought of something rare and they told me they didnt work that way-they start with the most common thing and work their way down. Since they didnt know what it was they put me on a Gluten Free diet. The diet has helped with some things a little, but not much. I stay on it because of the fact that it has made a small improvement.
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Reply with quote  #6 
Hi,

I'm new here but can contribute to this. Both of my children have celiacs and are gluten free. My son also takes perscription digestive enzymes  for pancreatic insufficiency and has CVS. He's been strictly gluten free since ~9months old. He did have a dairy allergy which he has thankfully out grown. I was worried about adding dairy back in when he outgrew the allergy but it has not made an impact positive or negative on his cycles. Going wheat free does not help us with respect to his cycles.

heather
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artctrish

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Reply with quote  #7 

I know its been a while since anyone chimed in on this but I want to. I started three years ago with the vomiting for no apparent reason, chills, writhing in pain, trips to the ER at 3 am. Some how after all the negative tests and lack of answers I stumbled upon this site. I felt like I had been given a gift.... I was not crazy nor alone. My personal treatment had gotten close to the suggestions made by the dr's note someoen keeps linking in their posts.The axniety of what was "going to happen" just kept it going.  Phenergan at the hospital would end the cycle but not the prescrip at home. I finally had gotten a presc. for zofran at the onset of nausea and that help tons. I also kept something to knock me out at home too....and a cool cloth. In the fall i went to see a g.i. and he did a celaic test which came back posisitve for serum but neg for biopsy. I began a gluten free diet anyway and can I tell you how much better I feel???? I have not had a full blown incedent since September without a known trigger. I think it has helped kick me out of the anxiety phase since I don't worry about "is tonight the night?" anymore. I keep zofran and Xanax in my purse at all times, just incase. I hope this info will help someone. Celiac or not, I think I still had CVS and the gf diet is helping.

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mahler1987

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Reply with quote  #8 
Thrilled you are finding some relief, no matter what it is that is giving it too you. 
 
Many have tried the Gluten Free diet with no sucess, while some have had a bit of success with it, and there are some like you who feel that it's really helped them.  It's like every other treatment or medication... the results can greatly vary from person to person.
 
May you continue to be episode free for a very long time.
 
Pattie

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smileyface

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Reply with quote  #9 
A gluten-free diet has been helpful for me but more with my daily vomiting versus CVS. I am not strict about it, but I do generally try to avoid it.  Gluten is difficult for some people to digest; I know my friend with Crohn's eats gluten free by her doctor's orders because of that.  

I think like everyone has says that it just varies from person to person.  But if your doctor is okay with it, not a bad thing to try.
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