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Hello, I have been recently diagnosed w/celiac (blood tests and endoscopy).

 

It was a complete surprise, I have no digestive symptoms at all. I have had untreatable anemia for at least 15 years (I'm 43). I have had "bad knees" for as long as I can remember. (I also developed asthma and allergies when I was 31 years old.)

 

I started gluten-free on March 1st and have been VERY VERY strict. Cleaned out the house, and have made all my food at home. 

 

My question is, is it possible to start treating celiac, and then have your symptoms get WORSE?

 

My knees have never hurt for no reason, just while exercising and going up and down stairs. I haven't done either of those things for 2 days (did elliptical machine 2 days ago) but my knees hurt way more than usual!

 

It's not normal for my knees to ache for no reason. Could it be because of some kind of detox or something??? 

 

Thank you for your time.  :)

Julie

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Hi, Julie!

There absolutely can be withdrawal symptoms when you drastically change your diet, and a lot of people report withdrawal type symptoms when they go gluten-free... hard to pinpoint what it involves, but there definitely is a hurdle to get over when you take your usual foods away.

 

I was in your boat- I had no GI symptoms, just years of unexplained anemia and neuropathy, and got diagnosed by accident when they were looking at my gallbladder.  It took about 6 months on a gluten-free diet to clear both up.  Just the switchover to a different way of eating can throw your body off a bit, so just give your knees a little time for now to hopefully start behaving for you again.  It can take months to heal intestinal damage that leads to malabsorption and anemia, so that will take a longer time to resolve.  Did they say what scale of damage they found on your endoscopy?

 

You sound like you have all your ducks in a row and have researched, which is awesome.  Feel free to let us know any questions, we will be glad to help you out. Welcome to the forum! :)


I am my husband's "Silly Yak Girl" :)

I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

Celiac.com - Celiac Disease Board Moderator

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It may not apply for you but I didn't get relief from joint pain until I dropped soy protein. I don't often get 'soyed' but when I do the joints flare up still. It's not uncommon for us to have other intolerances and nightshades (potatos, eggplant etc) are another one that can cause joint pain in some folks. 

Hope you get some relief soon. 


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I dropped nightshades and most of my joint pain went away, but I had terrible trouble with my wrist and it was getting worse. I've been on glucosamine for a week now and it really seems to be helping. I just started a separate thread about it with the details.


gluten-free since June, 2011

It took 3 !/2 years but my intolerances to corn, soy, and everything else (except gluten) are gone!

Life is good!

 

 

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Thanks for the replies.  :)

 

Laura, the Doctor who did the biopsy said "it's as severe as I've ever seen it". He said he couldn't see any villi anywhere he looked. Pathology said I have "severe villi atrophy" and "scalloped appearance" (whatever that means.)

He said I've probably had it undiagnosed the whole time I've been anemic (like 15 yrs) and it might take 1-2 years for my villi to grow back.  I am going into my regular doc tomorrow to test for more Vit. deficiencies. (They tested Iron and Vit D, both low.)

I've started taking more vitamins, but wonder how much they'll help if I'm not absorbing much.

 

 

I'll consider cutting out more foods if I have to, but I hope i don't.

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I had a lot of pain to in my joints and yes potatoes don't help it.  What did help me almost instantly was I started taking different vitamins mainly cause mine were not t gluten free and they didn't seem to be doing anything. switched to nature made  SUPER B COMPLEX Your vitamin b's work as natural pain relievers, muscle relaxers, anti-depressants and so on.  also I take Vit d and magnesium.  I quit taking calcium cause I heard its hard on the digestive tract and can cause more joint pain and I get plenty of calcium in my diet naturally.  Hope the Vit. b's help. I was amazed how fast they work for me and my energy level is unreal.  Im going on 50 and feel like 30,. I also take a glucosamine.  Iv'e been gluten-free for 5 weeks now and feel amazing.

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I think your doctor is probably correct in the timeframe he gave you.  As things start to heal up and you are able to absorb it will get better, but do supplement even if you feel it is a losing battle... you will start to absorb it eventually :)  


I am my husband's "Silly Yak Girl" :)

I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

Celiac.com - Celiac Disease Board Moderator

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YES!  I first developed arthritis that would come and go in my twenties but it slowly got worse until I was finally diagnosed in my late thirties.  When I went gluten-free, I experienced withdrawal but my joints were okay at the time.  After 2 months gluten-free I had a really severe arthritis flare-up that lasted a few months.  For me, things did get worse before they got better, and they did get better.  My flare-ups became less frequent and severe and it mostly better now.

 

Unfortunately, going gluten-free had absolutely no effect on my wear and tear arthritis.  My knees clicked and ground before and they still do.   My back was not good before, and it isn't any better.  And my hips are the weirdest things,  after being gluten-free for a year I developed hip pain that I assume is arthritis.   :rolleyes: I'm assuming these are all osteoarthritis - it's nothing like my autoimmune flare-ups were.

 

I hope you feel better soon.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Thank you all. You've been very helpful.

I wanted to mention earlier, that I got diagnosed because of my dentist!

I complained of receding gums. He had a look and said I didn't have gum disease, but my gums looked unhealthy. He asked if I had any chronic illnesses, and when i said "Not really. Just anemia, but it's not that bad right now." he suggested I go get checked out for vitamin deficiencies and/or some chronic disease.

I told my doc, and she ran a bunch of different tests, including the celiac blood tests. They all came back high, and she told me to go get an endoscopy. I did, and celiac was confirmed. After I was diagnosed, I found out my grandmother had "sprue" (celiac) before she died.

 

Pretty weird. And I've got to thank my dentist. I wouldn't have been diagnosed if he hadn't told me to go get checked out.

Anyway, thanks again.  :)

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