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Could This Be Celiac's Disease?


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14 replies to this topic

#1 I am Cat

 
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Posted 20 October 2010 - 03:12 PM

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
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"A Nook can't read, so a Nook can't cook,
So what good to a Nook is a Hook Cook Book?"

~Dr. Suess

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#2 Dixiebell

 
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Posted 20 October 2010 - 03:43 PM

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.
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Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.
2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.
Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.
So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!
My adult daughter also has been helped by eating gluten-free.

#3 Lisa

 
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Posted 20 October 2010 - 03:44 PM

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
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#4 I am Cat

 
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Posted 03 November 2010 - 01:23 PM

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 >^^<
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"A Nook can't read, so a Nook can't cook,
So what good to a Nook is a Hook Cook Book?"

~Dr. Suess

#5 Emilushka

 
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Posted 03 November 2010 - 01:41 PM

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 this site, especially their gluten-free, casein-free menu (to avoid the dairy). It's more expensive than cooking, but could potentially save you time and effort. Having a backup is always nice.
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#6 I am Cat

 
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Posted 04 November 2010 - 01:24 PM

Thanks, I did and I ordered a package... Can't wait to get it... I'll let you know!
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"A Nook can't read, so a Nook can't cook,
So what good to a Nook is a Hook Cook Book?"

~Dr. Suess

#7 shopgirl

 
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Posted 04 November 2010 - 02:23 PM

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. :)
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"My experience has been that there is, surprisingly, always hope." - Eleven

Positive blood test & endoscopy / Gluten-free 10-07-10 / Dairy-free / Soy-free

#8 BoydBT

 
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Posted 05 November 2010 - 12:03 PM

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:
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#9 I am Cat

 
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Posted 07 November 2010 - 05:53 AM

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.
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"A Nook can't read, so a Nook can't cook,
So what good to a Nook is a Hook Cook Book?"

~Dr. Suess

#10 Skylark

 
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Posted 07 November 2010 - 08:30 AM

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.
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#11 BoydBT

 
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Posted 08 November 2010 - 10:58 AM

[quote name='Skylark' date='07 November 2010 - 11:30 AM' timestamp='1289147423' post='651696']

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
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#12 BoydBT

 
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Posted 08 November 2010 - 11:00 AM

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
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#13 I am Cat

 
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Posted 10 November 2010 - 05:01 AM

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. :-(
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"A Nook can't read, so a Nook can't cook,
So what good to a Nook is a Hook Cook Book?"

~Dr. Suess

#14 vontar

 
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Posted 09 January 2011 - 06:52 PM

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; http://www.celiac.co...ents/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.
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#15 possiblyglutensensitive

 
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Posted 11 January 2011 - 04:28 AM

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.
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