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It's Me This Time

NSG

By NSG
in Coping with Celiac Disease

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NSG Newbie
NSG
Posted

My daughter was diagnosed with celiac disease in 1989. She was 6 months old and very sick. The DARK AGES for gluten-free diets and we have lived through all the wonderful changes over the past 17 years.

However, about 10 months ago, my neurologist asked me if I had hear about the link between Celiac and migranes. She took a full medical history and suggested I see a specialist. My GP was not happy and ordered the serology testing to be done. We have been a gluten-free household for over 16 years - of course they were negative! Her comment - if the test are not positive and STAY positive then it's not Celiac. Like she knows what she is talking about. I have to admit that the other members of our family eat gluten, just not a home.

The gastroenterologist told me that the serum test may never be positive, but given my family history for celiac disease [maternal aunt, 2 paternal cousins, and my daughter all have celiac disease] and other medical problems, a gluten-free diet would be advisible. So I tried it.

I have been feeling great for over 6 months. No joint pain or swelling, blotting, insomnia, or depression. I was off all the Rx and starting to exercise again. GREAT!!!

Then two weeks ago, we went out to eat at a local restaurant. Nothing different and normally gluten-free. Within 3 hours, both my daughter and I were sick. My husband was not. It had to be gluten.

Since then I have had a recurrence of the RA [joint swelling and pain], sinus infection, fevers, vomitting and diarrea, and an irregular period that has lasted over 13 days. My daughter is supportive and we have talked about how this is for the birds!!! But no one else seems to understand - my husband, my family members, my co-workers, etc.

For 16 years I have been helping my daughter through these attacks, but now I'm not sure I know what to do!!! It is so overwhelming...

Nancy

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mommida Enthusiast
mommida
Posted

I just think the testing is just not accurate enough. If you have enough damage visible, and the medical professional can recognize it, then you can get diagnosed with Celiac. If not then you can get the murky title of gluten intolerant.

So many people have noticed they have become more sensitive to gluten after they start the gluten free diet. I think perhaps the body has healed to a point when it recognizes the gluten in the system again, the immune system goes all out, full force and the reaction is more intense.

L.

NSG Newbie
NSG
Posted
  • Author

Thanks!

I know that it will get better with time - but this reaction is my first with all the symptoms at once. It's been 2 weeks and I'm tired of feeling sick!

It's nice to know that other people have coped with this successfully! My daughter tells me to hang in there - but she has never known anything but a gluten-free diet.

It's one thing to try a gluten-free diet to get rid of related illnesses - another thing to accept that this is really Celiac. Thanks again!

Nancy

Girl Ninja Newbie
Girl Ninja
Posted

I agree! I used to mostly get hives and migraines. Since going gluten-free, if I do manage to poison myself, my reactions are WAY more severe. It causes my heart to race and I get the sleepy/ foggy head and prolonged constipation along with headaches and miserable hives.

beth g Newbie
beth g
Posted

My mom is feeling better - I tell her to hang in there.

ravenwoodglass Mentor
ravenwoodglass
Posted
Thanks!

I know that it will get better with time - but this reaction is my first with all the symptoms at once. It's been 2 weeks and I'm tired of feeling sick!

It's nice to know that other people have coped with this successfully! My daughter tells me to hang in there - but she has never known anything but a gluten-free diet.

It's one thing to try a gluten-free diet to get rid of related illnesses - another thing to accept that this is really Celiac. Thanks again!

Nancy

First ((((((hugs))))). I hope you feel better soon I know it can take awhile but it will get better.

NSG Newbie
NSG
Posted
  • Author

Had a great day yesterday! First day that I was able to eat something other than applesauce and plain rice cakes.

Then late last night I got sick again. I know that I did not eat anything with gluten - and Beth and I have cleared out all the personal care products that had gluten in them! How long does this take to feel good again!

Oh, I have people who can eat real food--- I'm at work today with donuts and pizzelles everywhere I turn!!

UGH!!!!!!!!!

Nancy

Oh, I have people who can eat real food--- I'm at work today with donuts and pizzelles everywhere I turn!!

have = should have been HATE

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NSG Newbie
NSG
Posted
  • Author

:) Thanks to all the support and information I have gotten from this site. It's been a week and I can finally eat a normal [gluten-free] diet again. I'm back to exercising, too!!

Thanks again!

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