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Silent Celiac - How Do You Know If You Have Been Glutened?


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15 replies to this topic

#1 love2travel

 
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Posted 06 June 2010 - 06:25 PM

I was diagnosed with celiac disease at the end of April and ever since have been strictly gluI ten free. The only reason I found out is that a sister has celiac disease and I realized I needed to be tested as well. Otherwise I would never have known. My doctor said that all my other bloodwork is "perfect". No anemia or anything.

Today my husband inadvertently seasoned my big juicy prime rib steak with a seasoning with traces of gluten. Although I craved it desperately and looked forward to it all day I could not bring myself to eat it. :angry: If I were to have eaten the big juicy steak would I have gone back to square one? Although I do not exhibit the usual GI symptoms at all I realize the damage it can do internally.

How would I tell if I had been glutened? Are there others out there who would have no clue what adversely affects you? I feel so blessed that I do not suffer as most of you do. Nothing really bothers my tummy. However, I have had severe chronic back pain for 2.5 years that is debilitating. Herniated discs, etc. Maybe it is related?

I see a dietician this week and will have a big fat list of questions for her! :D
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

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#2 sahm-i-am

 
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Posted 14 June 2010 - 05:14 PM

I have no physical symptoms of Celiacs as well. The only way we found out was wacky blood work and a crazy CT scan. The only way to tell if I'm healing is through bloodwork and if I eat gluten I'm not gonna heal. Granted, I have only been on this Celiac train for 2 months. But I thought I would share.

Have fun with the dietitian. I have one by me that is Celiacs herself.

Wendi
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Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"
Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"
Uhhh.....yeah!
DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!
DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.
Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

#3 Mari

 
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Posted 14 June 2010 - 09:11 PM

You might want to have tests for anti-gliadin antibodies, tissue transglutaminase and endomysin regularly - maybe once a year or so. It takes some time after being glutened for the tests to become positive and the occasional small amount of gluten may not cause significant damage in fact some of the silent celiacs never have significant intestinal damage and can lead normal lives even if they eat gluten.

One method which might help - not with the herniated disc - but with the pain is making sure that your kidneys are functioning well. Most of my lower back problems have gone away by doing herbal kidney cleanses.
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Gluten free and Cow Dairy free since 2006

#4 3lueb1rd

 
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Posted 19 June 2010 - 12:39 PM

I was just diagnosed with Celiac and have been wondering about the same thing!

I had positive blood tests, visual signs of damage during the endoscopy, and the histologist's report (biopsy) came back positive. No one has contacted me about how I should respond to the results (I went through my GP). Should I find a specialist, a dietician? I started the gluten-free diet three weeks ago, and the only thing I've noticed is a slight clearing of my skin and *maybe* more energy, *maybe* less diarrhea. These things were very mild to begin with and something I always had and so I didn't think anything was unusual. (I did have severe symptoms from malabsorption as a child in the 70s, but my parents thought I had outgrown Celiac Disease.) Anyway, I wouldn't be able to tell if I had eaten gluten. Thanks for clearing up the question. I'll expect to have to do the blood test periodically.

I'm assuming that even though I don't feel sick from eating gluten, I still shouldn't eat it because of the damage it's done to the intestine and the positive biopsy?

I suppose I should contact a specialist instead of waiting for the GP to call me. I just got the histology report back last week and so maybe she is just a little behind. :P
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#5 sb2178

 
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Posted 19 June 2010 - 04:59 PM

oh, yeah, don't eat i,t Bluebird. really, DON'T eat it.

There's an advantage to not being oversensitive. You can eat out, or go a relative's house, and basically stay comfortable even though you are likely having a low level of exposure. I actually have more issues with fatigue than GI after light exposure... but fatigue was followed by GI problems twice. Suddenly sleeping 9.5-10 hours/night and wanting a nap instead of 8.5 hours and being energized is my major clue that I shouldn't have. I also get increased joint pain, which could be similar to back pain...? Have you been checked for nutrient deficiencies?

Arg. I think-- after 4 days away and a day full of events-- I have to not eat out or at other people's houses for a while.
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#6 Skylark

 
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Posted 19 June 2010 - 06:05 PM

Gluten is nasty for biopsy-proven celiacs, whether you react or not. The problem is that there are rare intestinal cancers you can get if you keep eating gluten. (Don't be scared. They are rare, rare, rare.) It also predisposes you to other autoimmune conditions like thyroid disease or autoimmune neuropathies if you keep eating gluten.

I wish I didn't react so strongly. I'm not formally diagnosed, but even eating something out of a shared fryer can do my stomach in.
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#7 love2travel

 
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Posted 19 June 2010 - 07:23 PM

Thanks for all the information! I should have mentioned my bloodwork tested positive (the highest my doctor has seen to this date) and I am awaiting a biopsy (the GI specialist says I will need to go back on gluten for that but my GP wanted me off it immediately). The waiting lists are so long here (Alberta) that it will be four more months before my biopsy. All my other bloodwork is perfect and thankfully my kidney functions are good as well.

My back pain is just horrific - I literally cannot sit for more than about ten minutes at a time so I spend most of my time lying down. The pain is in my legs, too, so I have neurological damage and am seeing another neurosurgeon. Trouble is - our waiting lists here are between 6-12 months long! Am considering flying down to the U.S. for private MRI and surgery. That is, if I can sit that long...

Anyway, back to the matter at hand. I am SO very thankful I do not have IBS symptoms, tiredness and so on - that must be nearly unbearable at times. The reason I have a difficult time eating out is due to severe back pain, not celiac disease. I must stand to eat. Since being gluten-free my back pain has become even worse - I did not think that was even possible.

I will definitely request regular bloodwork (after my biopsy, that is).
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#8 T.H.

 
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Posted 19 June 2010 - 08:47 PM

As odd as this sounds, you may luck out and start noticing a reaction after you've been off gluten for a while. ;) My family were all silent celiacs (4 of us tested positive), and while only one of us had any gut symptoms before when we ate gluten, after going gluten free, we all get gut symptoms now if we get glutened. I've read of many others who have that experience as well.

As for your back? It could very well be celiac related. I have 2 partially herniated discs in my back, and after going gluten free and dropping a couple foods I was allergic to, my back pain has disappeared. If I eat my allergens, however, the pain is back within 24 hours. My father had celiac related back issues, too. The pain didn't go away completely for him - the damage was more severe - but it does seem to have gone down since he's gone gluten free.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#9 Fey

 
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Posted 19 June 2010 - 09:57 PM

As for your back? It could very well be celiac related. I have 2 partially herniated discs in my back, and after going gluten free and dropping a couple foods I was allergic to, my back pain has disappeared. If I eat my allergens, however, the pain is back within 24 hours. My father had celiac related back issues, too. The pain didn't go away completely for him - the damage was more severe - but it does seem to have gone down since he's gone gluten free.


Thanks for sharing! My mom and every single one of her sisters have been diagnosed with herniated discs with ZERO trauma. They also all have varying degrees of digestive issues - my aunts are luckier and just have upper GI issues after drinking beer (and they all love beer), whereas my mom and I suffer more of lower GI issues (mainly, constipation of epic proportions).

They found two herniated discs in my lower back (L3/L4, L4/L5) when I was 21, and I was in a really bad spell for 3-4 months. Had to go on a leave from work, couldn't walk upright, driving drove me to tears, and no medications helped. After intensive physical therapy, it slowly got better... in retrospect, it was when my boyfriend and I were going out to eat at Olive Garden 2x or more a week and I was having ramen at work for the longest time.

To the original poster - my back DID get better. No surgery, no injections to my spine, just physical therapy 3x a week for 3 months. I still have bad days, but nothing CLOSE to what I suffered when they first found it. My mom and I have both noticed our backs "act up" when our constipation gets to a really bad point.

I just started my gluten-free diet 11 days ago, and I'm pretty sure I got glutened on Wednesday or Thursday (meat sauce i used for dinner). My back started hurting a lot yesterday and again today, but it felt like a relief to be able to see some improvement off gluten, and to also see how my body reacts to accidental contamination in its various ways (GI went from normal for the first time in years to reacting to lactose and getting constipated, sleep schedule got messed up, back pain and fibro pain flared).
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Newbie - Trying out the gluten-free diet since 6/08/10.

#10 love2travel

 
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Posted 20 June 2010 - 07:02 AM

Maybe my back pain IS related! It has been 2.5 years living in much pain. I have had acupuncture, chiropractor, pilates, massage, many types of surgeons and physical therapy for a year and it has become worse. However, it is from a lot of sitting. My husband and I went on a flight to Europe in May for vacation (we own a house there and I was desperate to go!) but the flighs did me in. I got up and stretched OFTEN. Now I am paying for it dearly. It really would be incredible if my back pain even improved by 25% - even that alone would be worth going gluten-free!! My herniated discs occurred in an accident 2.5 years ago so am unsure how it could be related. Maybe part of the muscle pain/spasm as a result is related?? I also have myofascial pain syndrome and degenerative disc disease.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#11 Coolclimates

 
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Posted 20 June 2010 - 04:31 PM

I have also struggled with back pain, particularly in the last few years. Like most of the posters in this thread, I did not have the classic stomach and GI symptoms that so many Celiacs tend to have. But I am not a silent Celiac either.
My main issues have been: fatigue, insomnia, restless legs/cramping, back pain, sinus aches and other "allergy" like symptoms, easy bruising, frequent yeast infections, frequent nose bleeds, anxiety/depression, acid reflux, acne and some weight loss. I guess the acid reflux and weight loss are GI but compared to so many Celiacs who suffer from all the horrible GI symptoms, I am lucky in that case.
I've been on the diet for over 6 weeks now. However, I haven't felt noticably better yet. My parents say I seem more alert. I'm sure that I've "glutened" myself several times since starting this diet, but haven't really noticed anything out of the ordinary. I wonder if I will ever start having stomach issues if I'm glutened. However, the last couple of days I've felt sudden fatigue for an hour or so and then it goes away. Have no idea if this has anything to do with being glutened or not.
I'm a bit confused about the whole thing myself.
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#12 sahm-i-am

 
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Posted 21 June 2010 - 03:53 PM

I've been on the diet for over 6 weeks now. However, I haven't felt noticably better yet. My parents say I seem more alert. I'm sure that I've "glutened" myself several times since starting this diet, but haven't really noticed anything out of the ordinary. I wonder if I will ever start having stomach issues if I'm glutened. However, the last couple of days I've felt sudden fatigue for an hour or so and then it goes away. Have no idea if this has anything to do with being glutened or not.
I'm a bit confused about the whole thing myself.


Coolclimates - I am not your typical GI Celiac sufferer as well. My symptoms were swollen legs/feet and anemia. I have been on my gluten-free diet for 2 months now and just last week I started to see some energy return. At first I was feeling worse then I started having good moments/bad moments. I guess our bodies are regulating and 'detoxing'. I hope you feel better soon. Today I compared myself to the "Energizer Bunny" cuz I'm feeling so good! It has been a few years since I've felt this way! :D

Wendi
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Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"
Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"
Uhhh.....yeah!
DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!
DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.
Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

#13 SaraKat

 
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Posted 21 September 2010 - 11:33 AM

This post is like me too. I have been trying to find out why I was having left ribcage pain & underarm pain since Oct 2009. Randomly I found out I have celiac by a rheumatologist and then was referred to a GI Dr who confirmed with biopsy.

I have been mostly gluten free since 9/1/10. I know I have had a few slip ups from being new on the diet and not thinking certain things would have gluten, but found out later they did. I didn't feel any different after I those few bad things. It is very hard when you are not at your own home eating.

I do have to say that my left sided pain is a little better.

Sometimes I wish I would have a bad reaction to gluten so at least I know when I am eating it. I guess I will have to just rely on the bloodwork every few months.
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Positive TTG IGA blood test 8/13/10
Endoscopy confirmed 8/31/10
Started gluten-free diet 9/1/10

#14 Nadia2009

 
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Posted 21 September 2010 - 03:33 PM

I have also struggled with back pain, particularly in the last few years. Like most of the posters in this thread, I did not have the classic stomach and GI symptoms that so many Celiacs tend to have. But I am not a silent Celiac either.
My main issues have been: fatigue, insomnia, restless legs/cramping, back pain, sinus aches and other "allergy" like symptoms, easy bruising, frequent yeast infections, frequent nose bleeds, anxiety/depression, acid reflux, acne and some weight loss.


These were the exact same symptoms I suffered from for years. I was told my anxiety was due to my difficulty to assimilate minerals like calcium and magnesium. Every time I had a cold, I ended up with spasmodic coughing which I found was very annoying at times like when I was in a quiet museum or library. I thought I inherited the anxiety from my mom who suffered from chronic constipation and something close fibromyalgia. One doctor I visited booked an endoscopy apointment after I went to see him for bad acid reflux about 10 years ago but I skipped the endoscopy (he didnt tell he suspected anything and I had never heard of celiac at the time).

Before the 2009, my gluten intolerance hit me in my upper body mostly in the head but how would have known that anxiety, frequent tooth cavities, frequent colds and sinuses and shortness of breath and palpitations were all related. Now, I think gluten was what triggered my panic attacks.
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May 2009: IgG abnormal (not tested for full panel)
Sept 2009: Negative blood tests (I was on and off gluten)
Sept 21 2009: gluten free
Sept 21 2011: gluten free for 2 full years
Dec 2012: chronic fatigue and leaky gut.
Feb 2012: IgG reactions to almond, amaranth, sesame, sunflower, dairy, eggs, beans and of course gluten.
March 2012: modified GAPS diet.

#15 dani nero

 
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Posted 07 February 2012 - 04:14 AM

Great post and responses. Helps a lot for those of us with silent celiac. I myself am undiagnosed but I've always suffered from anxiety, amenorrhea, constipation, and now I'm starting to get rashes. I also have wondered if any damage is being done if accidentally glutened.
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD




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