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Diagnosed In Childhood- Now Adult

KatieKat

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KatieKat Newbie
KatieKat
Posted

Hi- I'm new here :) Well, I have a few questions because I don't have the insurance to get tested right now. So, here's the story..

As a baby, I was diagnosed with some type of wheat (well, gluten) intolerance and milk intolerance. I thought I grew out of the wheat thing, but the milk is still an issue- in large quantities and I prefer soy anyway. BUT I read that you don't grow out of this (gluten intolerance).. Is this true?

Also, through the years, I have been diagnosed with irrital bowl syndrome, a spastic colon, fibromyalgia, unexplained fatigue (with tons of thyroid tests), and I have severe migraines. So, I am guessing I don't even need a straight diagnosis. I am hoping my migraines will go away.

I am looking to see what other's opinions are on this... Does this pretty much mean I am allergic? Grr.. I don't want to be, but I'll do anything to stop all these health issues..

Thanks,

Katie

:rolleyes:

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KaitiUSA Enthusiast
KaitiUSA
Posted

Well you can get tested for celiac to see if you have it...but you can't grow out of it if you have it.

If you want to get blood tests you need to stay on gluten...since you know you have a problem with it you could always eliminate gluten and see how you feel. However it is an all or nothing diet with absolutely no cheating if you want to get better.

Also, celiac is not an allergy..it is an intolerance

KatieKat Newbie
KatieKat
Posted
  • Author
Well you can get tested for celiac to see if you have it...but you can't grow out of it if you have it.

If you want to get blood tests you need to stay on gluten...since you know you have a problem with it you could always eliminate gluten and see how you feel. However it is an all or nothing diet with absolutely no cheating if you want to get better.

Also, celiac is not an allergy..it is an intolerance

<{POST_SNAPBACK}>

Thanks :) I am eliminating it because I don't have insurance to be tested. It's sounds like I do based on all the problems I have encountered since childhood. I have to get rid of these migraines to function again. The stomach problems aren't so great either nor the scalp flare ups.. Ugh, were you depressed when you found out you had to change everything?

Thanks a bunch,

Katie

Claire Collaborator
Claire
Posted
Thanks :) I am eliminating it because I don't have insurance to be tested. It's sounds like I do based on all the problems I have encountered since childhood. I have to get rid of these migraines to function again. The stomach problems aren't so great either nor the scalp flare ups.. Ugh, were you depressed when you found out you had to change everything?

Thanks a bunch,

Katie

<{POST_SNAPBACK}>

Go gluten-free by all means. When you have insurance or the funds to be tested you could go with the Enterolab test (insurance iffy?) or with Kimbal labs. Most insurances will pay for Kimball. This is a genetic test - done by cheek swab. It will determine if you have the specific gene markers associated with celiac. Having them doesn't mean that you have celiac but if you also have the symptoms then it is an evidence based assumption that you do. If you do not have the markers you could not have celiac. Unfortunately Kimbal does not test for non-celiac gluten sensitivity that is usually the answer when a celiac test (in the presence of symptoms) is negative. Enterolab does both tests. Claire

FaithInScienceToo Contributor
FaithInScienceToo
Posted

Hi Kaite, and welcome!

Just one comment from me, right now -

I have been learning that soy, and corn, have also been linked to villi damage...so, prepare yourself for the possibility that you may need to get those out of your diet, too...

If you haven't already, you may want to check out this thread that I started with my questions about dairy/casein for more info:

Open Original Shared Link

Good luck, and I hope you'll find here all of the info you'll need to find your way back to good health!

Gina

nettiebeads Apprentice
nettiebeads
Posted
Thanks :) I am eliminating it because I don't have insurance to be tested. It's sounds like I do based on all the problems I have encountered since childhood. I have to get rid of these migraines to function again. The stomach problems aren't so great either nor the scalp flare ups.. Ugh, were you depressed when you found out you had to change everything?

Thanks a bunch,

Katie

<{POST_SNAPBACK}>

Well, the gluten-free diet would be cheaper than dr's testing, and it is a valid diagnostic tool - the gluten or diet challenge. That's how I was dx'd 9 years ago. But you do have to be 100% gluten-free - no wheat, oats (they're cross-contaminated in the US. The official verdict on oat itself is still out), rye or barley. No malt from barley, or spelt, or triticale. Some things are labled wheat free but still off limits to celiacs. And as for being depressed about the diet - I just wanted to feel better so I didn't care what I had to cut out. I still had issues with it at the beginning, but since I've been really 100% gluten-free, I don't miss the stuff - I enjoy my health too much. And depression has been linked to celiac disease, so going without gluten-free relieves the depression.

Good luck and keep us posted, ask any questions you want.

  • 9 months later...
lindalee Enthusiast
lindalee
Posted
Hi Kaite, and welcome!

Just one comment from me, right now -

I have been learning that soy, and corn, have also been linked to villi damage...so, prepare yourself for the possibility that you may need to get those out of your diet, too...

If you haven't already, you may want to check out this thread that I started with my questions about dairy/casein for more info:

Open Original Shared Link

Good luck, and I hope you'll find here all of the info you'll need to find your way back to good health!

Gina

Thanks for posting this

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