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I Hope I'm Doing The Right Thing!

VitaminDGirl

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VitaminDGirl Apprentice
VitaminDGirl
Posted

Hi. I was here several weeks ago.

I'd had an off the charts saliva test saying I'm highly intolerant (dr. said 'allergic') to gluten.

Soooo...I decided I just had to know if I'm celiac or not.

Went to GI dr.

He ordered bloodwork, unsure of validity of saliva testing.

All bloodwork negative, including bloodwork of the same test I took by saliva.

He even called the lab that does the saliva, who told him a false positive could happen if one has parasites.

Did a poo test.

Sent it to the lab.

Parasite free.

Decide to do the biopsy, though GI dr. highly doubts celiac.

It was scheduled for yesterday.

I was sick and canceled.

I have had pain in my feet and legs and back that suddenly onset (first in feet) a year ago. The only tests of allll my xrays, nearly full body MRIs, every kind of bloodwork you can imagine....

They only could find 'for certain': Vitamin D deficiency, which I'm now recovered from.

and now this saliva test.

I'm tired of the pain. I don't feel I can wait any longer to do the test.

Tonight I decided I'm gluten-free.

My 7 year old has awful constipation and ezcema. She is adopted. (saying this b/c we are not blood related to think of a link between us for intolerance or celiac).

Her bloodwork was negative.

Thinking of taking her off without a biopsy.

Thanks for listening and for your support.

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Kay DH Apprentice
Kay DH
Posted

I went gluten-free 11 months ago, about a month after my symptoms started. My blood test and endoscopy biopsy were negative, but the celiac panel was several months after going gluten-free and the 1 biopsy was after a only week of being on gluten. They may have been false negative. I do have the HLA-DQ8 genetic marker, but the GI said that only gave me a 10% chance of celiac; he thought all my GI problems were diverticulitis, and he dismissed all my other symptoms (brain fog, lethargy, stiff joints, muscle aches, etc). Needless to say the large number of colon biopsies were negative and there were no diverticuli. So, it is sometimes more important to trust your body more than the doctors. Going gluten-free is work from social, financial, and food standpoints, but it is worth it. I'm a stronger biker than I've been for years, I haven't caught a cold since going gluten-free (I'm usually a virus magnet), and I feel much better. It is a tough decision that you are making, but it can be important for your health. If you have not done so, research all the ways that gluten can hide in food and cross contamination. :)

Frances03 Enthusiast
Frances03
Posted

I would recommend rescheduling the endoscopy. Being gluten free is not easy. It's also not easy explaining to people WHY you are gluten free, especially if you dont have a formal diagnosis. It might all sound rosy and wonderful right now, but wait a few months until you are hungry and someone offers you food and tells you it's gluten free but you're not sure. If you HAVE a formal diagnosis by endoscopy, you will say "No, thank you" and wait until you can get something you KNOW is gluten free. You will have no trouble telling people, "I can't eat gluten because I have Celiac Disease". If you diagnose yourself, a few months down the road it is going to be all too easy to get lax on the diet and then you're going to be right back where you are now. The test is no big deal and is over before you know it. Why not get it done so you have proof. Also, why spend all this time and money not eating gluten if you do NOT have Celiac Disease? Life is a LOT easier when you have a proven diagnosis, in my opinion.

VitaminDGirl Apprentice
VitaminDGirl
Posted
  • Author

I went gluten-free 11 months ago, about a month after my symptoms started. My blood test and endoscopy biopsy were negative, but the celiac panel was several months after going gluten-free and the 1 biopsy was after a only week of being on gluten. They may have been false negative. I do have the HLA-DQ8 genetic marker, but the GI said that only gave me a 10% chance of celiac; he thought all my GI problems were diverticulitis, and he dismissed all my other symptoms (brain fog, lethargy, stiff joints, muscle aches, etc). Needless to say the large number of colon biopsies were negative and there were no diverticuli. So, it is sometimes more important to trust your body more than the doctors. Going gluten-free is work from social, financial, and food standpoints, but it is worth it. I'm a stronger biker than I've been for years, I haven't caught a cold since going gluten-free (I'm usually a virus magnet), and I feel much better. It is a tough decision that you are making, but it can be important for your health. If you have not done so, research all the ways that gluten can hide in food and cross contamination. :)

Kay--thanks a million for this post. How encouraging to hear. I'm so glad to hear that in spite of all the testing, you took the plunge and are noticing such positive results. I appreciate you taking the time to share your story with me. I'm sure I'll see you around the site.

VitaminDGirl Apprentice
VitaminDGirl
Posted
  • Author

I would recommend rescheduling the endoscopy. Being gluten free is not easy. It's also not easy explaining to people WHY you are gluten free, especially if you dont have a formal diagnosis. It might all sound rosy and wonderful right now, but wait a few months until you are hungry and someone offers you food and tells you it's gluten free but you're not sure. If you HAVE a formal diagnosis by endoscopy, you will say "No, thank you" and wait until you can get something you KNOW is gluten free. You will have no trouble telling people, "I can't eat gluten because I have Celiac Disease". If you diagnose yourself, a few months down the road it is going to be all too easy to get lax on the diet and then you're going to be right back where you are now. The test is no big deal and is over before you know it. Why not get it done so you have proof. Also, why spend all this time and money not eating gluten if you do NOT have Celiac Disease? Life is a LOT easier when you have a proven diagnosis, in my opinion.

Hello, fellow homeschooling Mama! I am homeschooling 4 of my own. congrats on being preggo with #4!

I very much appreciate your comments and will be taking them into prayerful consideration.

Thank you for sharing your struggle and story as well.

Hope to see you around here.

VitaminDGirl Apprentice
VitaminDGirl
Posted
  • Author

Rescheduled my biopsy for next week.

not looking forward to the procedure,

but I do think I'll regret not doing this final 'check'.

thanks again for the feedback!

Still on gluten for a little while longer!

Skylark Collaborator
Skylark
Posted

I would recommend rescheduling the endoscopy. Being gluten free is not easy. It's also not easy explaining to people WHY you are gluten free, especially if you dont have a formal diagnosis. It might all sound rosy and wonderful right now, but wait a few months until you are hungry and someone offers you food and tells you it's gluten free but you're not sure. If you HAVE a formal diagnosis by endoscopy, you will say "No, thank you" and wait until you can get something you KNOW is gluten free. You will have no trouble telling people, "I can't eat gluten because I have Celiac Disease". If you diagnose yourself, a few months down the road it is going to be all too easy to get lax on the diet and then you're going to be right back where you are now. The test is no big deal and is over before you know it. Why not get it done so you have proof. Also, why spend all this time and money not eating gluten if you do NOT have Celiac Disease? Life is a LOT easier when you have a proven diagnosis, in my opinion.

Depends on how sick gluten makes you. I self-diagnosed have no problems at all turning down gluten or explaining myself, as I'm sick for a couple days after eating traces of it. I just tell people I'm celiac. You say what you need to stay away from poison! Nobody has my medical records but me and my doctor, so how would they know otherwise? Besides, doctors say I probably am celiac and I've had three different doctors tell me that there is no sense breaking a strict gluten-free diet that's maintaining my health for a challenge with a series of somewhat unreliable tests.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Rescheduled my biopsy for next week.

not looking forward to the procedure,

but I do think I'll regret not doing this final 'check'.

thanks again for the feedback!

Still on gluten for a little while longer!

Just keep in mind that false negatives on the biopsy are not uncommon. Do try the diet strictly after the biopsy is done. Your body does know the answer.

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