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Lost And Confused. So Sick. Please Advise.

shanluts

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shanluts Apprentice
shanluts
Posted

I am so confused. I was dx Celiac 9 years ago via blood test. Negative scope. Doctore told me to go gluten-free and I did. For 5 years. Kept feeling sick still so went back and they redid the blood work and dr said well your levels are so high I think you are allergic to gluten and if your only symptom is diarhhea then you can eat it and take imodium. I followed her advise for a year or so and returned and saw someone else that said with pos blood test you have celiac disease and quit eating gluten. THEN I had a baby and I discovered that I was reacting the whole time to dairy. When I went off dairy while nursing I didnt get diarhhea again. SOooo, I decided I was dairy intolerant and started eating gluten again. Well, I was sick all the time stilll beacuse I love dairy and kept eating it. Went to GI one last time. Doc said I dont think you have celiac disease (probabily cuz I am very overweight) I think you have post gallbladder removal syndrom. He gave me pills to take when I eat hihg fat and sent me on my way. This seemed to work. I took the pills and never had post meal diarhhea. I continued to still have morning nausea and 4-6 morning bathroom diarhhea(water) trips.

I have been eating gluten for 1 year and just last Monday became so sick. I have been sick ever since. Nauseau won't stop. Im also having numbness in my hands and feet. Hands mainly. Should I go back gluten free (2 positive blood tests) or should I go to a new gi and get rescoped? Confusion lies in the fact that I have no gallbladder and am very sensitive to protein and fat.

I am OK going gluten free today as I cant stand feeling like this anymore.

Help please! I am miserable [:(]

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squirmingitch Veteran
squirmingitch
Posted

I don't even know what to say b/c I'm soooo steaming about the *&*%%$ doctors who told you you could eat gluten!!!!!! Positive blood work for celiac & they say you can eat gluten. Shaking my head in disgust. There are no false positives on the blood work for celiac only false negatives.

Dear, STOP eating gluten this very moment. And you were likely getting cross contamination the first 5 years that you were eating what you thought was gluten free & that's why you didn't feel better. Start over. Learn. We are here to help you. Start here:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Ask questions any time.

Humongous hugs to you!

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shanluts Apprentice
shanluts
  • Author
Posted

squirmingitch (Tears streaming down my cheeks) Thank you!!!

No gluten today at all. Im scared to eat. I ate a banana and some potatoes today.

I wish I could find my blood work. I saved it. I would love to share my results.

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squirmingitch Veteran
squirmingitch
Posted

It's okay honey. When you feel better you can look for the blood work & share it.

I'm still so upset over what has happened to you b/c of idiot doc! I can hardly type. We've seen this stuff all too often too.

I can't emphasize enough that you need to do whole foods only for at a bare minimum in your case 4 moths --- more like 6. You were dairy intolerant b/c you weren't able to process it b/c of the damage to your villi.

Read the Newbie 101 & that will hep a lot.

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shanluts Apprentice
shanluts
  • Author
Posted

It's okay honey. When you feel better you can look for the blood work & share it.

I'm still so upset over what has happened to you b/c of idiot doc! I can hardly type. We've seen this stuff all too often too.

I can't emphasize enough that you need to do whole foods only for at a bare minimum in your case 4 moths --- more like 6. You were dairy intolerant b/c you weren't able to process it b/c of the damage to your villi.

Read the Newbie 101 & that will hep a lot.

Thank you! I will read the Newbie 101. Im too sick to feel angry today. Tomorrow I am going to wake up angry though!!!

I am a wedding photographer. This is going to be so hard. Being gone for 10 hours with no food! Other than bars, etc.

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1desperateladysaved Proficient
1desperateladysaved
Posted

[

Get better soon. I find hard boiled eggs and my own homemade wraps (they are in the recipe part) are good to go. I also bring fruit and veggies for my sandwiches. If you like your eggs uncruched, you can carry them in an egg carton. Just be sure to label it hard boiled. Nuts are also good on the go. :P

Please get tested to see what supplements you need and what allergies you have. Take courage many of us have been through years of not knowing and are traveling on.

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squirmingitch Veteran
squirmingitch
Posted

It's a bit much for you to handle right now but you mentioned a child. You may want to get your child tested by a GOOD ped. She/he needs to keep eating gluten until all testing is finished though. And at the same time it would be so much better if you had a gluten-free household. Maybe you can just give your child a gluten sandwich for lunch & gluten toast with breakfast but otherwise gluten-free household. People do have shared households but it's not easy. I did it until we found out my hubs is also celiac. I can't tell you the mental stress it's taken off both of us not having to worry about cc. Not to mention cooking is a whole lot easier.

Tell us about your child. Also, what caused you to be tested for celiac the first time around when you got the dx?

I also would like to add that the scope probably came up neg. b/c doc didn't take any biopsies OR not ENOUGH. There's a lot of territory to cover inside there & they really need to take 8, 10, even 16 biopsies.

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shanluts Apprentice
shanluts
  • Author
Posted

It's a bit much for you to handle right now but you mentioned a child. You may want to get your child tested by a GOOD ped. She/he needs to keep eating gluten until all testing is finished though. And at the same time it would be so much better if you had a gluten-free household. Maybe you can just give your child a gluten sandwich for lunch & gluten toast with breakfast but otherwise gluten-free household. People do have shared households but it's not easy. I did it until we found out my hubs is also celiac. I can't tell you the mental stress it's taken off both of us not having to worry about cc. Not to mention cooking is a whole lot easier.

Tell us about your child. Also, what caused you to be tested for celiac the first time around when you got the dx?

I also would like to add that the scope probably came up neg. b/c doc didn't take any biopsies OR not ENOUGH. There's a lot of territory to cover inside there & they really need to take 8, 10, even 16 biopsies.

as far as the child...You mean in old posts? My oldest daughter who is 9 now. Has severe icthyosis. We tried gluten-free for about 6 months and nothing really changed. I posted her test results in a very old post of mine.

I have 3 small children btw :)

1 with Tree nut allergy.

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squirmingitch Veteran
squirmingitch
Posted

I was referring to your first post today. you said, " then I had a baby" so I was speaking only on those 4 words. Okay, so you know then about testing the kids. Good.

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shanluts Apprentice
shanluts
  • Author
Posted

I was referring to your first post today. you said, " then I had a baby" so I was speaking only on those 4 words. Okay, so you know then about testing the kids. Good.

Haha see I cant think!!!! Thanks again for your help today

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squirmingitch Veteran
squirmingitch
Posted

Gluten brain eh? Sucks don't it?

And YVW. No thanks necessary. We're all in this boat together.

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shanluts Apprentice
shanluts
  • Author
Posted

Found my old results:

Gliadin Antibody IGG 31 High Range <11

Gliadin Antibody IGA 6 Range <6

Reticulin igg ab <1:10 Range <1:10

Reticulin IGA AB <1:10 Range <1:10

Tissue Transglut. IGA <3 Range <5

Then last year Everything the same but Gliadin IgG 23.4 High Range <10

What does it mean that eveything is normal BUT the Gliadin IgG?

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ravenwoodglass Mentor
ravenwoodglass
Posted

Found my old results:

Gliadin Antibody IGG 31 High Range <11

Gliadin Antibody IGA 6 Range <6

Reticulin igg ab <1:10 Range <1:10

Reticulin IGA AB <1:10 Range <1:10

Tissue Transglut. IGA <3 Range <5

Then last year Everything the same but Gliadin IgG 23.4 High Range <10

What does it mean that eveything is normal BUT the Gliadin IgG?

Did they test your total IGA? If your's is low then it would cause a false negative on the TGA related tests.

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shanluts Apprentice
shanluts
  • Author
Posted

Did they test your total IGA? If your's is low then it would cause a false negative on the TGA related tests.

No they did not. That is all I have. Not enought to interpret?

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squirmingitch Veteran
squirmingitch
Posted

Found my old results:

Gliadin Antibody IGG 31 High Range <11

Gliadin Antibody IGA 6 Range <6

Reticulin igg ab <1:10 Range <1:10

Reticulin IGA AB <1:10 Range <1:10

Tissue Transglut. IGA <3 Range <5

Then last year Everything the same but Gliadin IgG 23.4 High Range <10

What does it mean that eveything is normal BUT the Gliadin IgG?

The gliadin IGG was positive & the gliadin IGA was positive b/c the range is below 6 but you had 6; not below 6. And as I understand it then that points to the other results being false neg. That's why they should do a total IGA. But I'm not great at interpreting these things. We'll see if someone else can give you some feedback.

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beachbirdie Contributor
beachbirdie
Posted

The gliadin IGG was positive & the gliadin IGA was positive b/c the range is below 6 but you had 6; not below 6. And as I understand it then that points to the other results being false neg. That's why they should do a total IGA. But I'm not great at interpreting these things. We'll see if someone else can give you some feedback.

You caught a very good point, squirmingitch. The IgA is AT the cutoff point, not BELOW it.

To me, that is significant. I posted some stuff on another of the OP's threads, but didn't catch the IgA.

Yep, the total IgA would answer a lot.

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squirmingitch Veteran
squirmingitch
Posted

But you know what? The point is moot b/c shalnuts was dx'd with celiac 9 years ago. So it really doesn't matter what the blood says. I mean obviously they screwed up by not doing the total IGA & that's also probably the same doc who told her she could eat gluten.

Whole point being that shalnuts is having problems now eating gluten so she (you're a she aren't you?) has a dx of celiac & should go gluten free. Period. End of story. Right?

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beachbirdie Contributor
beachbirdie
Posted

But you know what? The point is moot b/c shalnuts was dx'd with celiac 9 years ago. So it really doesn't matter what the blood says. I mean obviously they screwed up by not doing the total IGA & that's also probably the same doc who told her she could eat gluten.

Whole point being that shalnuts is having problems now eating gluten so she (you're a she aren't you?) has a dx of celiac & should go gluten free. Period. End of story. Right?

Agreed! You're right, that diagnosis from 9 years ago does not go away!

A doc that would tell a diagnosed celiac to go eat gluten needs to be dumped (after whipping).

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squirmingitch Veteran
squirmingitch
Posted

Agreed! You're right, that diagnosis from 9 years ago does not go away!

A doc that would tell a diagnosed celiac to go eat gluten needs to be dumped (after whipping).

And caning!

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mommida Enthusiast
mommida
Posted

Sorry this happened to you original poster. Well this hasn't killed you, and gluten free is just going to make you stronger! ;)

Welcome to the forum! I'm sure you will stick around and learn a lot and have some fun. :D

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