Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Lost And Confused. So Sick. Please Advise.

shanluts

Recommended Posts

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 [:(]

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

shanluts Apprentice
shanluts
Posted
  • Author

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.

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.

shanluts Apprentice
shanluts
Posted
  • Author

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.

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.

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


shanluts Apprentice
shanluts
Posted
  • Author

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.

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.

shanluts Apprentice
shanluts
Posted
  • Author

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

squirmingitch Veteran
squirmingitch
Posted

Gluten brain eh? Sucks don't it?

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

shanluts Apprentice
shanluts
Posted
  • Author

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?

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.

shanluts Apprentice
shanluts
Posted
  • Author

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?

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.

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.

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?

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).

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!

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say? do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did it take to get a diagnosis? if you are legally blind there are adaptive devices that will help ...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, I apologize. Obviously I've confused you with someone else. I have vision problems due to undiagnosed Celiac complications. Being legally blind, y'all look the same from here. You still have not said which new medication you started taking. Parathyroid disorders can affect antibody production. Bone Loss Correlated with Parathyroid...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

      during the gluten challenge I did not consume any wheat germ the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least. no anemia however the endo who ordered...
    4. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, I'm sorry you're having such a rough time. How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them. Do you pressure cook your beans? Were you pressure cooking your wheat germ? What drugs are you taking? Some immunosuppressive drugs affect IgA production. Do...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st worst 12 days of my life Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Helen1984
    Newest Member
    Helen1984
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.