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It's Official...

JillianLindsay

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JillianLindsay Enthusiast
JillianLindsay
Posted

I never thought I'd be HAPPY to say I have celiac disease! I've been sick for a very long time (worsening over the past 9 months) and finally today my DR gave me the official Dx of celiac disease. Finally we have figured out what is wrong and I can continue on the road to healing. Yes, the gluten-free diet can be high-maintenance but my health is within my control :) It's a relief to finally have an answer after years of not knowing what was wrong. Thanks for allowing my self-indulgence and for me to share my relief.

All the best,

Jillian

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Lisa Mentor
Lisa
Posted

Welcome to the Club! I certainly can understand your joy.

lizard00 Enthusiast
lizard00
Posted

I never thought I'd be happy either, but figuring out what's wrong, and that you are in fact, NOT dying :lol: is a wonderful thing!!

I hope you continue feeling better!!

JillianLindsay Enthusiast
JillianLindsay
Posted
  • Author

Thanks :)

lovegrov Collaborator
lovegrov
Posted

I was SO relieved when they diagnosed me, especially since half my doctors were convinced I had non-Hodgkins lymphoma.

richard

Dr-LaTino Newbie
Dr-LaTino
Posted

Very glad you found an answer. It's so frustrating when doctors can't find anything wrong with you and tell you everything's alright when you know it's not. I got your reaction when I was semi self diagnosed with Celiac. It's pretty hard at first, but you'll get the learning curve.

I'd advise you try to keep your ingredients as simple as possible for the time being. Then start adding in spices/things you know are gluten-free after you've done the homework.

Here's the road to a new you!

JillianLindsay Enthusiast
JillianLindsay
Posted
  • Author

Yes, such relief! Along with the typical celiac disease symptoms I also had seizures which was very scary! I haven't had a seizure or even a fainting spell since going gluten-free :)

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TrillumHunter Enthusiast
TrillumHunter
Posted

Welcome aboard! This board is an amazing help.

I was glad to have it as well. My alternate diagnosis was MS. Thankfully, all the symptoms associated with that disappeared with the gluten-free diet!

ang1e0251 Contributor
ang1e0251
Posted

Welcome to the Forum!!

I'm glad to have a dx that puts me in charge of my own health and not dependent on drugs.

LDJofDenver Apprentice
LDJofDenver
Posted

Me, too. It was just a huge relief to finally know what the heck was going on with me. At least I know what I have and what to do about it.

I had many many symptoms. In additional to the "usual" intestinal woes, I had migraines, roving pins and needles (neuropathy), balance problems (gluten ataxia), DH, osteopenia. Happy to say the neuro stuff is all gone.

This forum is a great resource and so good to have so many of "us" that understand what we're talking about!

JillianLindsay Enthusiast
JillianLindsay
Posted
  • Author

Thanks :) I've found this forum so helpful and supportive already -- a great place for info and for sharing with people who've been there. Happy day-before-the-weekend ;)

Sandi* Apprentice
Sandi*
Posted
Thanks :) I've found this forum so helpful and supportive already -- a great place for info and for sharing with people who've been there. Happy day-before-the-weekend ;)

Hi and congratulations! It must be a relief to finally know!

I am currently waiting for a diagnosis myself, I have an endoscopy in a month (which means a month of gluten :( ). I must ask, though, in your signature it says that you had you endoscopy in June, it actually took over two months for your doctor to get the test results? :blink:

JillianLindsay Enthusiast
JillianLindsay
Posted
  • Author

Hi Sandi,

They can usually tell right away if there are flattened villi (the folds in your small bowel that help you to absorb nutrients from your food). I didn't have any obvious stunted villi but a lot of inflammation and lymphocytes. My GI doc had to take a lot of biopsies and have them sent off to a pathologist to determine whether or not it was celiac-caused.

The positive blood test, inflammation/lymphocytes, positive response on gluten-free diet, plus HLA DQ2 positive test together were enough for my DR to officially diagnose me.

So no, you likely won't have to wait as long as I did to get your answer :) Also I live in Canada (land of free health care) where they are perpetually back-logged. If you live in the U.S. your health care system will likely move along faster than ours does.

Good luck to you!

Jillian

Hi and congratulations! It must be a relief to finally know!

I am currently waiting for a diagnosis myself, I have an endoscopy in a month (which means a month of gluten :( ). I must ask, though, in your signature it says that you had you endoscopy in June, it actually took over two months for your doctor to get the test results? :blink:

jkr Apprentice
jkr
Posted
Hi and congratulations! It must be a relief to finally know!

I am currently waiting for a diagnosis myself, I have an endoscopy in a month (which means a month of gluten :( ). I must ask, though, in your signature it says that you had you endoscopy in June, it actually took over two months for your doctor to get the test results? :blink:

I received my results in a week but the results were ready in about 3 days. It was just because I couldn't see the GI for a week. Also, my GI said he couldn't tell just by looking at my intestines. I had severe villi atrophy, inflammation and lymphocytes.

After one year of telling the doctors I had it, it was a relief to finally get an offical diagnosis. Last year my doctors thought I was "bleeding" somewhere because I had iron deficient anemia.

Good luck!

JillianLindsay Enthusiast
JillianLindsay
Posted
  • Author

Me too jkr! Back in December my DR sent me home with a prescription for Zantac and said I had an ulcer. Glad we got to the bottom of things!

Jillian

I received my results in a week but the results were ready in about 3 days. It was just because I couldn't see the GI for a week. Also, my GI said he couldn't tell just by looking at my intestines. I had severe villi atrophy, inflammation and lymphocytes.

After one year of telling the doctors I had it, it was a relief to finally get an offical diagnosis. Last year my doctors thought I was "bleeding" somewhere because I had iron deficient anemia.

Good luck!

shendler Rookie
shendler
Posted

It does feel great to get to the bottom of our problems :)

jkr Apprentice
jkr
Posted
Me too jkr! Back in December my DR sent me home with a prescription for Zantac and said I had an ulcer. Glad we got to the bottom of things!

Jillian

Hope you're doing well with the gluten free lifestyle. I defifnitely have to put a lot of thought in what I eat, but I do feel better. It's so worth it.

Medz Newbie
Medz
Posted
Hi and congratulations! It must be a relief to finally know!

I am currently waiting for a diagnosis myself, I have an endoscopy in a month (which means a month of gluten :( ).

Sandi - I'm in the same position, but I went gluten-free for a few weeks as my 1st appt was end Oct before it got moved forward to late Sept. Now gone back on the gluten after a few weeks off and feeling crappy. Can't believe I put up with these symptoms for so long when they can be so easily fixed!

Agree with the thread though - such a relief to be diagnosed with something manageable.

ksymonds84 Enthusiast
ksymonds84
Posted
Sandi - I'm in the same position, but I went gluten-free for a few weeks as my 1st appt was end Oct before it got moved forward to late Sept. Now gone back on the gluten after a few weeks off and feeling crappy. Can't believe I put up with these symptoms for so long when they can be so easily fixed!

Agree with the thread though - such a relief to be diagnosed with something manageable.

I was gluten free for a year and a half, then did formal testing. I glutened challenged for two months and couldn't take it anymore and went back to gluten free a month before my endoscopy. I still showed positive, so any amount of time you can challenge MAYBE will be helpful; however, getting sick again on gluten is a positive test IMO!

Sandi* Apprentice
Sandi*
Posted
Hi Sandi,

They can usually tell right away if there are flattened villi (the folds in your small bowel that help you to absorb nutrients from your food). I didn't have any obvious stunted villi but a lot of inflammation and lymphocytes. My GI doc had to take a lot of biopsies and have them sent off to a pathologist to determine whether or not it was celiac-caused.

The positive blood test, inflammation/lymphocytes, positive response on gluten-free diet, plus HLA DQ2 positive test together were enough for my DR to officially diagnose me.

So no, you likely won't have to wait as long as I did to get your answer :) Also I live in Canada (land of free health care) where they are perpetually back-logged. If you live in the U.S. your health care system will likely move along faster than ours does.

Good luck to you!

Jillian

Hi Jillian, thanks, and sorry for the late reply :). I was able to find a new doctor who actually seems to be knowledgeable about celiac disease so I hope she will also take many biopsies. No matter what, I'm going to go gluten-free right after the procedure anyway because I feel so crappy eating gluten. The symptoms have just gradually crept in - constipation, bloating, cramping (although milder than I expected, acne, headaches, dizziness...I didn't realize how much better I felt being gluten light until now! A few more weeks - I can't wait :).

Sandi* Apprentice
Sandi*
Posted
Can't believe I put up with these symptoms for so long when they can be so easily fixed!

Yes, I agree here! It's like you don't realize how many of your problems can be related to gluten (except for GI problems). Let's hope our endoscopies turn out positive :).

  • 10 months later...
JillianLindsay Enthusiast
JillianLindsay
Posted
  • Author

I've been gluten-free for one whole year! At my last GI check-up, my ttg was down to ... *drum roll*... a big, whopping... ZERO! Woohoo! :lol: *victory dance*

ravenwoodglass Mentor
ravenwoodglass
Posted

I've been gluten-free for one whole year! At my last GI check-up, my ttg was down to ... *drum roll*... a big, whopping... ZERO! Woohoo! :lol: *victory dance*

Congrats on doing such a good job!!

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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
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    • knitty kitty
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

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