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Silent Celiac - How Do You Know If You Have Been Glutened?
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16 posts in this topic

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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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I, too, am what I think you would call a silent Celiac in that I didn't have (at least I don't think) any GI symptoms. I was diagnosed purely by accident after getting tested when my husband and I found out that one of our kids had Celiac (and HE was diagnosed by accident). Since his diagnosis, we found that me and one other kid had it. None of us had what you would call classic GI symptoms, even though my 2 kids who have it (the 3rd one doesn't) tested HIGH positive. (I tested weak positive).

OK -- this will be kind of gross. After my blood test came back positive, and before I had my endoscopy to make the confirmation of diagnosis, I started noticing how my body reacted after I ate anything with gluten. I never had loose stools at all. In fact, when I ate gluten, it was almost the opposite. Now that I'm off of gluten, my stools are VERY loose. Does anyone else notice that? (Sorry to be so gross, but I'm almost wondering if someone could have "reverse" celiac. That is, once they stop eating gluten, THEN they have GI symptoms.)

One thing that I did and do notice is that my energy levels have gone way up. For YEARS, I was complaining that, even after 8 hours of sleep, it was like I hadn't slept at ALL! My docs couldn't explain it. Hormone levels, blood counts, everything was "normal." My chiropractor said I was "out of alignment," but even chiropractic didn't make a difference.

Speaking of lower back issues that some people were talking about, I, too, have some, although not severe. It's just that my back and/or hip gets "out of whack" every once in a while. I just had a DEXA scan at the request of my GI doctor (she wanted to check my bone density to see if, because of the Celiac, I had any absorption problems with calcium), and I came back JUST under the norm for density. So, it's possible that my hips/bones are a little weak, and I'm prone to back issues?

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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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