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

Could This Be Celiac's Disease?

I am Cat

By I am Cat
in Coping with Celiac Disease

Recommended Posts

I am Cat Rookie
I am Cat
Posted

Hi,

I'm new to the boards... what i'm hearing isn't new to me though... I've been diagnosed as anorexic... been in recovery for six years now. I'm also Bipolar I, rapid cycling... ADHD, without Hyperactivity, and on Adderall, Topamax, and Abilify... Also, Hypothyroid (taking Synthroid for 25 years now)... I've been tested for allergies to gluten, dairy, wheat and eggs...and found to be allergic to all of these... I was tested back in 1999. At that time, I went off those foods completely, dropped 40 pounds, and set my anorexia into a downhill spiral once again! It ended in a six week manic/psychotic episode that landed me in the hospital, cutting myself in 2003, and later in 2004, I ended up in the Eating Disorder Hospital for my eating disorder (of course) after going back on these foods to begin gaining the weight. My bipolar disorder went out of control, my ADD, PTSD (I'm an adult survivor of childhood molestation), and anorexia, all spiraling at the same time! Finally, all these things started settling back in... But my symptoms were added to when I started having seizures in 2008. They have since stopped, but a cause was never found by a neurologist. Tests WERE done, and I was found to have brain neuropathies... so? I'm 48 years old... so what? I have bipolar disorder... so? I also have carpal tunnel in both hands, and cubital tunnel in both elbows...

I have recently had trouble with parasthesia in my fingers... (I'm a mess...), in the past, I have had four jaw surgeries to correct TMJ.... four foot surgeries to correct bunions...

appendectomy

tubal ligation

radial keratotomy

skin grafts in my mouth to correct connective tissue problems with my gums...

through it all... I have suffered with severe clinical depression turning into bipolar disorder in 1999... Lovely...

But, I kept my sense of humor... Enter laughing...

My symptoms from gluten, dairy, eggs: Headache, diarrhea, cramps, gas, stuffy nose, asthma, (obstructed airway from swollen tongue and bronchial tubes), wheezing, eggs will go through me like spun glass, ... yeah, that's the ticket...

I'm also pretty much allergic to anything that licks itself, grows from the ground and pollinates and is a strawberry....

In spite of this stuff, I continue to "carry on", and I enjoy a nice life... two kids, four dogs, five birds, and a bunny,... (all of which I am allergic) (except the kids) :-)

I have lab slips in my hot little hands to be tested for Celiac's Disease... Seems like a no-brainer, but then I read where you should overload with gluten... now THAT seems so counter-productive... I really don't want to DO that... Do I have to? Or is that just something to assure your success on a positive reading? A friend of mine here on the boards had a positive result on his test and he was eating gluten all along... I'm sort of riding the fence at this point...

A little bit of guidance would be great.. Thanks,

Cat

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

Celiac.com Sponsor (A8-M):


Dixiebell Contributor
Dixiebell
Posted

If you are not consuming gluten your test could be a false negative. It is better if you are consuming it on a regular basis, everyday. But, you could just get the tests and see what happens. Did you say that you are still eating gluten? If you are, after your testing is done you could go gluten free for a few months and see if you get any relief.

Lisa Mentor
Lisa
Posted

Hi Cat and welcome! It's best to be tested when a full gluten diet has been consumed for a period of a month or two (preferably two).

I have no knowledge about your history, but assuming a full gluten free diet, with multiple vitamins would not be a bad thing. But it has to be completely gluten free, to include your meds as well as anything your put into your mouth....

I don't know if that is the route of your issues, but I do wish you success. :) And I do have a little bit of knowledge about childhood violations. If you feel like sending me a PM, I would be pleased to reply. :)

Lisa

  • 2 weeks later...
I am Cat Rookie
I am Cat
Posted
  • Author

Hi Cat and welcome! It's best to be tested when a full gluten diet has been consumed for a period of a month or two (preferably two).

I have no knowledge about your history, but assuming a full gluten free diet, with multiple vitamins would not be a bad thing. But it has to be completely gluten free, to include your meds as well as anything your put into your mouth....

I don't know if that is the route of your issues, but I do wish you success. :) And I do have a little bit of knowledge about childhood violations. If you feel like sending me a PM, I would be pleased to reply. :)

Lisa

Thank you Lisa... I have a handle on those things... ((((Lisa)))), you're a sweetheart.

Well... I had "the test" done last week.... the results came in today... POSITIVE for Celiac's Disease. :-(

I went out today and bought every book I could get my hands on... I'm a bit OCD... but in this case... better to be knowledgeable... I hope to learn a lot of things from this site.

Thank you all for your support... I just have to remember... Garbage in... Garbage out... And STOP with the gluten.

My challenges are the added allergies to dairy, wheat, eggs and strawberries... LOVELY... trying avoiding those PLUS gluten... but believe it or not... they DO have cookbooks that are Dairy, Wheat, Gluten, eggs, nut, corn, and yada, yada, yada free! LOL... Unfortunately... I HATE to cook... despise the grocery store and would rather starve... seriously... I've done it before... as evidenced by my eight week stay in the eating disorders hospital. :-(

However, my state of mind... (hopefully) is better now. (it IS better, right?) my iron is also low... my cholesterol high, and my kidney function borderline. I'm, as they say... a mess. I have some "fixin" to do... as they say in Texas.

Wish me luck... I need a company here in San Antonio that prepares meals that are dairy, wheat, egg and gluten free! I'd buy them, freeze them and prepare and serve! Seriously!

Anybody know of such?

I see a GI doctor on Friday at 10 a.m. CST.

Wish me luck.

Thanks!

Cat >^^<

Emilushka Contributor
Emilushka
Posted

At least wheat and gluten will keep you from eating roughly the same foods! That's sort of like getting one off the list.

Check out Open Original Shared Link, especially their Open Original Shared Link (to avoid the dairy). It's more expensive than cooking, but could potentially save you time and effort. Having a backup is always nice.

I am Cat Rookie
I am Cat
Posted
  • Author

Thanks, I did and I ordered a package... Can't wait to get it... I'll let you know!

shopgirl Contributor
shopgirl
Posted

Good lord, you're a warrior. I dealt with about 8 months of Celiac symptoms and completely crumbled into a weepy puddle of helplessness.

You like reading? I read Stephen Wangen's Healthier Without Wheat right after I was diagnosed and really liked it. It was eye opening, to say the least. And Shauna Ahern's Gluten-Free Girl is cute, inspiring book about being diagnosed with Celiac. I got both of them at the library but they're available at that large Internet book retailer that I don't think can be mentioned around here. You know the one I mean. :)

Good luck with your GI doc. :)

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

Celiac.com Sponsor (A8-M):


BoydBT Apprentice
BoydBT
Posted

I am Boyd, and I am the friend "I am Cat", lol.. has referenced as the one that ate gluten right up to the test. My count was 32. What was you count Countess Cat?

Yes you really need to learn to cook. Too bad I am not your chef. You know I'd whip you into a gluten warrior. OWWWWWWW!

Boyd :rolleyes:

I am Cat Rookie
I am Cat
Posted
  • Author

I wish you were my chef.

I don't know my count. They didn't tell me... guess I'll have to ask that one. The biopsy is tomorrow. my mother will be there... Guess that will have to do.

Skylark Collaborator
Skylark
Posted

Hey, Cat. You will feel a lot better off gluten. I used to be bipolar and going gluten-free and taking high potency vitamins fixed it. My carpal tunnel stays a lot better off gluten too.

You also may find your allergies less troubling in six months to a year. The celiac gut is "leaky" from the damage and lets bits of food through to the bloodstream that you can react to. Once your intestine heals and has a normal barrier, some of those allergies can become less severe or even go away entirely. I used to react to soy, dairy, and shellfish and I can eat all those foods now.

Good luck, and don't be too upset about the diagnosis. You may have found the root cause of a lot of your health problems.

BoydBT Apprentice
BoydBT
Posted

I used to react to soy, dairy, and shellfish and I can eat all those foods now.

Good luck, and don't be too upset about the diagnosis. You may have found the root cause of a lot of your health problems.

[/quotE

Hello Skylark.

It is very possible. I am usually very allergic to shellfish. I can eat a a few shrimp. Crab and lobster have always been off limits.

Usually if I eat any amount of shrimp I get a medium head ache. I had a half pound last weak and found I felt

very little discomfort. I even had Alaskan king crab, no trouble at all.

I am not sure but I was thinking the same as you.

BBT

BoydBT Apprentice
BoydBT
Posted

I wish you were my chef.

I don't know my count. They didn't tell me... guess I'll have to ask that one. The biopsy is tomorrow. my mother will be there... Guess that will have to do.

Good luck. I will be thinking of you. Hugs. XOXOXO

BBT

I am Cat Rookie
I am Cat
Posted
  • Author

I had the biopsy, very little trouble... I have an appt on the 23rd to see the results.. They did tell me I have gastroesophegeal Reflux Disease. Lovely... Of course, half the things they say I can eat on that diet, they aren't taking into consideration my allergies, and I've been pretty miserable trying to stay on it... I wish they'd get their sh*t together and get the results and just get me a diet already... I see my therapist (Eating Disorder) on Friday... she's going to set me up with my former nutritionist... so that should help.

The sooner the better... I'm over this Purgatory thing. I feel like I'm on a hump or something. I feel irritable and antsy.... and taking me off caffeine didn't help anything. :-(

  • 1 month later...
vontar Newbie
vontar
Posted

Hi Cat. I'm new to forums, been gaming online for years though. Don't really know anything about posting, so have no idea what this will look like! I found out I was celiac in '84 when I almost died of starvation even though I was eating a "normal" diet. I've been there, done that to just about every thing related to Celiac.

The main points I've learned are;

NO CHEATING. This article sums it up nicely; https://www.celiac.com/articles/22237/1/Better-Education-for-Celiac-and-Gluten-Sensitive-Patients/Page1.html

Also, find a good Naturopathic clinic for the AMA still doesn't have a clue about celiac.

Then follow a rotation diet until your gut heals some or you risk losing the foods you are eating now.

Lastly, find a local support group. Both for celiac and for mental health. NAMI has many good programs for those with neurological problems.

Good luck to you.

possiblyglutensensitive Explorer
possiblyglutensensitive
Posted

Good lord, you're a warrior. I dealt with about 8 months of Celiac symptoms and completely crumbled into a weepy puddle of helplessness.

You like reading? I read Stephen Wangen's Healthier Without Wheat right after I was diagnosed and really liked it. It was eye opening, to say the least. And Shauna Ahern's Gluten-Free Girl is cute, inspiring book about being diagnosed with Celiac. I got both of them at the library but they're available at that large Internet book retailer that I don't think can be mentioned around here. You know the one I mean. :)

Good luck with your GI doc. :)

I' m reading Gluten Free Girl right now, I love it! and it gives you so much hope. she really shows how you are not loosing, but gaining, from being gluten free. and it is a great book, I love how she writes. it is very inspiriong too because to be a writer was her dream and the whole celiac diagnosis and gliuten free journey set her on her path to writing for a living.

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. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer. Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks...
    2. Scott Adams
      - Scott Adams replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Celiac disease is the most likely cause, but here are articles about the other possible causes:
    3. Scott Adams
      0

      Celiac Disease and Longevity: Can Treatment and Healing Improve Long-Term Survival?

    4. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    5. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,208
    • Most Online (within 30 mins)
      7,748
    juliemt
    Newest Member
    juliemt
    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

    • lizzie42
      Low iron and vitamin d

      By lizzie42 · Posted

      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By Scott Adams · Posted

      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
×
×
  • 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.