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Silent Celiac: Newbie Question

tryme

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tryme Rookie
tryme
Posted

Hi Everyone,

 

First of all I would like to thank you guys for all the help, awesome information  and support you provide to people with celiac. It is especially very helpful to newbies like me. I am still trying to get a handle on my own diet. 

 

Secondly I am sorry for being a nuisance as I ask lot of questions (and sometimes not the most intelligent ones just like the one I am about to ask)  :P

 

I am a silent type celiac. Major symptom is the big C along with mood swings, irritability etc. When I first started my diet (this October) I went through something similar to gluten withdrawal for about 4-5 days (headaches, up and down energy, severe mood swings that stabilized). I am aware  that it takes time for some psychological symptoms to pass and energy to stabilize. To make matters worse I might  have hyper-parathyroid issues that can contribute to low energy and mood.So no way of knowing that my gluten free diet is working because my mood and energy might not improve as long as my HPH is not resolved.

 

After my first week of  gluten free diet of fruits and veggies (was when I had the gluten withdrawal). Following that for about a week  I (unknowingly) had rice, seeds and legumes with the package stating " may contain wheat". My Big C does not return as long as I do not eat foods full of gluten. So during this whole month, even after consuming the forth mentioned foods, I didn't have any symptoms. So I have no way of knowing if I was glutened or not.

 

I don't know how to figure out if I have been glutened. I was wondering if I should be expecting the gluten withdrawal symptoms again because I did consume those products that "may contain gluten." 

 

Are there other symptoms I should be looking for? Are there other celiacs here with silent symptoms and what works for you guys.Am I just being paranoid? :unsure:  I sometimes feel minor stomach cramps but I feel they are more somatic than physiological as I always worry that I might be ingesting gluten and not knowing it as I don't have severe symptoms to it but I am well aware that symptoms or not the gluten does equal amounts of damage to the body.

 

Thanks for you advice!

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bartfull Rising Star
bartfull
Posted

OK, first of all, if you get C, you are not "silent". Not all celiacs have D. A lot of them get C instead.

 

So the products you had said "may contain wheat", and not "made in a facility that processes wheat"? I ask because there is a big difference. If something says "...facility..." I don't worry so much. If it says "Made on EQUIPMENT that also processes wheat", I usually pass on it because I don't trust the employees to thoroughly clean that equipment. If it said, "May contain wheat", I would put it back on the shelf.

 

You just have to get into the habit of reading every label, every time. We ALL made mistakes in the beginning. I now keep a small magnifying glass in my purse for those labels in tiny print, and I read the labels, not only on anything new I may consider buying, but even on "old faithfuls" that I buy every week. Sometimes the ingredients change, and this prevents me from being caught.

WinterSong Community Regular
WinterSong
Posted

Agreed - you are not a silent Celiac. You have symptoms, they just may not be as painful or annoying as others. 

 

Read labels. If you have a question, call the company and let them know you have Celiac. I tend to stay away from anything that says "produced at the same facility as wheat" or "on the same equipment as wheat" unless I speak with a customer care representative myself and am satisfied with their techniques to keep their products safe. 

 

We all make mistakes. You just have to constantly be on guard because you are your own health advocate. You will feel worried for a while (I still have dreams of being glutened - there's a whole thread on it, lol), but you'll get the hang of it.  :)

 

Welcome to the board!

cyclinglady Grand Master
cyclinglady
Posted

I just had anemia when I was diagnosed (and a whacked out thyroid that had been under control for over 15 years).  No tummy issues.  However, I did develop tummy issues (indigestion, rock feeling in stomach) between my blood test and biopsy.  I attribute my increasing symptoms to eating a loaf of bread a day (I kid you not!), cakes and cookies which was a sweet farewell to gluten.  I knew in my heart that my biopsy was going to show damage.  

 

I have been glutened a few times since my diagnosis.  I get that rock feeling in my stomach and indigestion (first clue) but now I will vomit, cramp, feel achy, fatigued, anxious, etc.  Lots of symptoms that I never had before.  Each time I get glutened my symptoms get worse (or at least I feel like they do!)

 

So, the others are right.  You have symptoms but they are horrific (lucky you).  

 

Keep to the diet.  Be diligent.  While I was "slient" I developed not only anemia but osteopenia and osteoporosis -- plus, a compression fracture doing nothing.   The fracture was awful and really set me back.  

tryme Rookie
tryme
Posted
  • Author

Thanks everyone!

You are right I really should be reading all my labels its just I  make mistakes thinking some foods are naturally gluten free.  Since I have started I am getting very careful after few blunders.But my major concerns was the symptoms to see if or not I am eating gluten. I guess I shouldn't be looking for symptoms similar to another gluten withdrawal . From what it sounds like the symptoms will be more prominent from the glutening as body gets used to gluten free diet.

 

Thanks for your help everyone!

txgal748 Apprentice
txgal748
Posted

Hi Lovelrning,

 

I have Silent celiac.  I have been gluten-free since 5/21/2012.  To this day I have not had a gastro symptom.  The few times I have been glutened I experienced pain in my feet and legs which I had frequently before going gluten-free.  I know it's crazy!   People with neurological problems also will have joint pain, headaches, fatigue, brain fog, and a few other symptoms.

eers03 Explorer
eers03
Posted

I HIGHLY recommend getting on Amazon and ordering "Gluten Free Grocery Shopping Guide" 2012-13 edition by Matison & Matison.  It is the most comprehensive guide for everything you can imagine buy item and brand that you will run into in a grocery store.  Mayo Clinic dietitians recommended it to me and I have used it since.

 

I would not worry too much about whether or not you consumed gluten because you cannot change what you have already consumed so forget about it.  Moving forward, you can control whether or not you consume something from a package that reads "may have been processed on equipment that also processes wheat".  We stay away from those products.

 

If you are not someone to double over in pain due to accidental ingestion, you may truly struggle to find immediate symptoms of accidental ingestion.  In my mind, thats why you have to be all the more vigilant because if you consume it, your body will react whether there is an immediate impact or not.  I'm silent.  I don't become immediately ill.  Instead, my liver enzymes go up and I lose bone density which over time, is a really big deal.  Once we start harvesting organs, we are hardly "symptomless". LOL.

 

Good luck.  Sounds like you are doing a really good job of being vigilant.

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TGK112 Contributor
TGK112
Posted

I am also fairly symptomless. In my 14 months being gluten free - I cannot really say if I have ever been glutened. I would find it hard to believe that I have not accidently been glutened at least once.

 

I found that having a six month blood test ( as well as a follow-up endoscopy) to be very reassuring. It let me know that I was indeed keeping the diet correctly. And now I am on track to have yearly blood tests as a continued follow up. This seems to be my only and best feedback.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

 

Are there other symptoms I should be looking for? Are there other celiacs here with silent symptoms and what works for you guys.Am I just being paranoid? :unsure:  I sometimes feel minor stomach cramps but I feel they are more somatic than physiological as I always worry that I might be ingesting gluten and not knowing it as I don't have severe symptoms to it but I am well aware that symptoms or not the gluten does equal amounts of damage to the body.

 

 

I agree with the others that if you're experiencing constipation then you aren't really symptom-free.  (Although, when I first read "the big C" I thought you meant cancer. :o )

I just wanted to add that I am asymptomic other than osteopenia at 40.  I have no digestive issues, no skin issues, no other health problems at all.  In fact, I only got tested because Celiac is in my family and I wanted a baseline on my bloodwork.  The positive result and subsequent endoscopy confirmation surprised the heck out of me.  So I know what you mean about not being 100% sure that you aren't accidentally glutening yourself - because you may never know.  My GI doctor recommends what TGK112 mentioned - to get the bloodtest redone at the 6 month mark (I've only been gluten-free for 5 weeks) to make sure I'm on the right track.

 

It's sort of a mixed-blessing.  On the one hand, I'll be extremely happy if I don't have to go through the severe agony that some folks do when they get accidently poisoned.  On the other hand, I could be getting glutened, doing further damage to my innards, and not even know it.  It is hard too because some of the potential minor symptoms (i.e. a little gas, a headache, etc.) could be caused by a myriad of other things and may not have anything to do with gluten.

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